We came home last Saturday night after 3 weeks and 5 days. It was a long stay, longer than her usual, but not her longest.
She is doing baclofen 3 times a day (and no valium). The doses need to be 8 hours apart, so we are doing 6 AM, 2 PM, 10 PM. It means getting up a little early and going to bed a little late. But it is better than 6 hours apart and getting up in the middle of the night. She is doing well. She has been awake and alert. Yes her tone is tight, and tighter than I would like...but it is the best we can do and still maintain her alertness. They will not replace the baclofen pump for a minimum of 6 months.
Through Halloween she is also doing the IV antibioitcs 3 times a day (at the same time as the baclofen). Then the plan is to switch to twice a day (12 hours apart). That will be easier, because then we can do either 6 AM and 6 PM, or 7 AM and 7 PM. Much easier times to do meds. (although the baclofen will still be 3 times a day...we we still end up doing meds 5 times per day instead of 2.)
Her congestion is pretty much completely gone. With no additional oxygen needed. Hooray!
We are now doing an in-dwelling foley cathedar at night (meaning we leave a cathedar in to drain her bladder through the whole night.) So far so good. She just produces too much urine during the night and always has. I think she is sleeping better and so are Mom and Dad. I am worried that we are increasing her risk of infection...but I just can't come up with a better option. One of the NTU nurses said that she sees increased urine output at night in spinal cord injury patients. I am fairly certain her spinal cord was damaged when she had her rods placed. I asked the nurse what they do and she said they just cath more frequently at night. Not what I wanted to hear. The only suggestion the Dr. could come up with was to feed her less at night. We tried that a few months ago to no avail. But it may be worth another shot.
I am planning on sending her back to school Thurs (Halloween). I could probably have sent her today or tomorrow. But she has a Dr. appt tomorrow (Wed) so I'll just keep her home until the day after that.
She is doing great clinically (everything you can see or measure). I am still SUPER worried about these "super bugs" that she has. I think we will make it through this infection...but if she gets another bad one...I don't even want to think of the consequences if they are unable to treat it.
2 unusual things...the last 3 mornings her temperature has been elevated. When I take her temp at night it is low, so I put 1 warm blanket on her, but then by morning her temp is elevated. Not super high, but over her norm. I take the blanket off and she cools down with no med and no other interventions. And her temperature has been perfect for the rest of the day. So I don't think it's a true fever. But I don't really know what to do about it except get up in the middle of the night and take her blanket off. They still never checked her cortisol (which goes up in the morning). Maybe I need to have them check that. I should probably also check her blood sugar then too. I suppose it could be pain (her heartrate is also slightly elevated)...needing baclofen or something. But she is not acting like she is in pain. Maybe we need to give a larger dose at night. What would be great is if there were a self-regulating blanket that could sense if you were hot or cold and adjust accordingly. I would pay A LOT of money for something like that. (If I had a lot of money). Let me rephrase that...I would get INSURANCE to pay a lot of money for something like that.
The other unusual thing is she has been lolling her tongue out. I can't tell if it is communication or involuntary. Yesterday when she did it, I fed her some applesauce (which she hasn't eaten for a LONG LONG time orally, but she used to love it). She really really liked the applesauce. I was nervous feeding her since it has been so long, but she does really well with her secretions (swallowing her saliva) and has passed every swallow study she has ever taken (even though it's been a while since she had one). (A swallow study is where they have the person swallow food that has barium in it. The food will be a variety if thicknesses. The barium will show up on x-ray, so they watch with x-ray as she swallows to make sure she doesn't aspirate (food going into her lungs) any of the food.) Another sign of aspiration is coughing or gagging when you eat and she didn't do any of that. I'm still not sure that the tongue lolling meant that she wanted to eat, but she enjoyed it nonetheless.
I cannot tell you how astronomically grateful I am for insurance. We just got our statement for her July hospitalization (which was 15 days long and 3 Operating room visits plus a myriad of other tests). It was $103,000.00. That is more than we owe on our house! And this is just one of her hospitalizations, not to mention meds, Dr.'s appts, equipment and therapy. So, so, so, so, so grateful!
Tuesday, October 29, 2013
Saturday, October 26, 2013
Home
We are home. We are soooooooo glad. We were in for 3 weeks and 5 days.
I will try to remember to post more later.
I am always so wiped out when we get home. So I don't feel like posting right now.
I will try to remember to post more later.
I am always so wiped out when we get home. So I don't feel like posting right now.
Last night and this morning
No high BP last night.
This morning awake and no oxygen from 6:30-11:00. Then she needed oxygen when she fell asleep. Back awake at 12:00.
As far as the meropenum versus ertapenum...they are fine for her to finish out her 10 day course of meropenum and then switch her to ertapenum. Even though they don't think the meropenum really helped the pneumonia.
She is off the valium.
Her oral baclofen switched from 4 times a day to 3 times a day. Which is also a lower daily dose (since they just took one dose off and didn't raise any of the doses.)
Lungs sound a course. Coughed up a lot of stuff this morning.
I have not talked with her Dr.'s yet.
We tried cathing her at 2 AM instead of 4 AM to try and get a lesser amount. That worked, but then her 6 AM cath was huge. We can work it out at home though.
I am hoping for home today or tomorrow.
This morning awake and no oxygen from 6:30-11:00. Then she needed oxygen when she fell asleep. Back awake at 12:00.
As far as the meropenum versus ertapenum...they are fine for her to finish out her 10 day course of meropenum and then switch her to ertapenum. Even though they don't think the meropenum really helped the pneumonia.
She is off the valium.
Her oral baclofen switched from 4 times a day to 3 times a day. Which is also a lower daily dose (since they just took one dose off and didn't raise any of the doses.)
Lungs sound a course. Coughed up a lot of stuff this morning.
I have not talked with her Dr.'s yet.
We tried cathing her at 2 AM instead of 4 AM to try and get a lesser amount. That worked, but then her 6 AM cath was huge. We can work it out at home though.
I am hoping for home today or tomorrow.
Friday, October 25, 2013
Now what?!?!?!
No going home today. They said maybe tomorrow. I doubt it. I think a few more days.
The pseudomonas that they cultured from her lungs (from the pneumonia) was resistant to meropenum and all other antibiotics they tested on it. So they think that her getting better was coincidence and not due to the meropenum. So they want to switch her back to ertapenum. I don't think it is coincidence. She did good on meropenum, bad on ertapenum, good on meropenum and now they want to switch her back to ertapenum. It sounds like a bad idea to me. The primary team is going to check with infectious disease 1 more time to make sure this is what they want to do.
This is bad news because every really bad pnemonia she has ever had (which has been 2 of them...and she almost died both times...LITERALLY...they were very severe) have been pseudomonas. So if she gets another bad pnemonia, and now if her pseudomonas is resistant to all of the antibiotics they tried...I don't even want to think about it. They said that it doesn't mean there aren't any antibiotics that won't kill it, just that they will have to look harder to find an effective antibiotic.
They now seem more concerned about her blood pressure because it happened 2 nights in a row. They said most people think of blood pressure being related to the heart, but it is really closely related with the kidney. So they are going to do blood and urine to look at her kidneys. They will also look at her electrolytes.
She has had her last dose of valium.
Tomorrow they may switch her baclofen from 4 times a day (every 6 hours) to every 3 times a day (every 8 hours).
She was awake for 4 hours this morning (which is more than previous mornings). And so far she has needed no oxygen all day today (and it is Noon). That is great. That means her lungs are doing better.
We have been tracking the mount she is getting out when we cath her. Her 4 AM cathing is always HUGE! And the majority of her daytime caths are small. We have been cathing every 4 hours during the day and every 6 hours at night. Logically you would think switching to 6 hours during the day and every 4 hours at night. But then you realize that Mom or Dad would be getting up every 4 hours all night and that we would be waking Ellie up every 4 hours during the night and everyone agrees this would not be a good plan either. So we are looking more closely at putting in a foley (a cathedar that would stay in) overnight. This does raise her risk of infection by alot. So I don't really want to do it. But if the large volume of urine is what is affecting her high blood pressure, then the risk may be worth it. And we can't really think of any other options. If we don't want to try the foley I was thinking of doing 7AM, 1 PM, 7 PM, 1 AM. If that doesn't work then 7AM, 1 PM, 7 PM, 1 AM, 4 AM. She usually wakes up around 1:00-2:30 anyway... for a bit, then she will go back to sleep. It really just depends on what time this huge volume is produced.
She is doing well overall. All vitals look good (except BP). No oxygen yet today. More awake. There are just a few issues to work out.
The pseudomonas that they cultured from her lungs (from the pneumonia) was resistant to meropenum and all other antibiotics they tested on it. So they think that her getting better was coincidence and not due to the meropenum. So they want to switch her back to ertapenum. I don't think it is coincidence. She did good on meropenum, bad on ertapenum, good on meropenum and now they want to switch her back to ertapenum. It sounds like a bad idea to me. The primary team is going to check with infectious disease 1 more time to make sure this is what they want to do.
This is bad news because every really bad pnemonia she has ever had (which has been 2 of them...and she almost died both times...LITERALLY...they were very severe) have been pseudomonas. So if she gets another bad pnemonia, and now if her pseudomonas is resistant to all of the antibiotics they tried...I don't even want to think about it. They said that it doesn't mean there aren't any antibiotics that won't kill it, just that they will have to look harder to find an effective antibiotic.
They now seem more concerned about her blood pressure because it happened 2 nights in a row. They said most people think of blood pressure being related to the heart, but it is really closely related with the kidney. So they are going to do blood and urine to look at her kidneys. They will also look at her electrolytes.
She has had her last dose of valium.
Tomorrow they may switch her baclofen from 4 times a day (every 6 hours) to every 3 times a day (every 8 hours).
She was awake for 4 hours this morning (which is more than previous mornings). And so far she has needed no oxygen all day today (and it is Noon). That is great. That means her lungs are doing better.
We have been tracking the mount she is getting out when we cath her. Her 4 AM cathing is always HUGE! And the majority of her daytime caths are small. We have been cathing every 4 hours during the day and every 6 hours at night. Logically you would think switching to 6 hours during the day and every 4 hours at night. But then you realize that Mom or Dad would be getting up every 4 hours all night and that we would be waking Ellie up every 4 hours during the night and everyone agrees this would not be a good plan either. So we are looking more closely at putting in a foley (a cathedar that would stay in) overnight. This does raise her risk of infection by alot. So I don't really want to do it. But if the large volume of urine is what is affecting her high blood pressure, then the risk may be worth it. And we can't really think of any other options. If we don't want to try the foley I was thinking of doing 7AM, 1 PM, 7 PM, 1 AM. If that doesn't work then 7AM, 1 PM, 7 PM, 1 AM, 4 AM. She usually wakes up around 1:00-2:30 anyway... for a bit, then she will go back to sleep. It really just depends on what time this huge volume is produced.
She is doing well overall. All vitals look good (except BP). No oxygen yet today. More awake. There are just a few issues to work out.
Slooooowwww internet
The internet here at the hospital drives me crazy. It was so slow that it wouldn't let me post an update on Ellie yesterday.
So here goes...
Not last night, but the night before (does that make you want to start jumping rope?..."Not last night but the night before...24 robbers came knocking at my door...") she had an elevated bloodpressure, but no elevated heartrate. It is puzzling. Everything else looked good. In the morning it came back down and resolved itself.
Yesterday during the day she did good. She was awake for about 75% of the day. Her vitals looked good all day. She needed oxygen all day (about 1.5 liters). I went to school yesterday morning and when I came back the nurse said "How do you feel about gong home?" I said quizzically, "Today???!?!?!?!" She said "No, but maybe tomorrow". (Tomorrow would be today (Fri)).
Last night she coughed several times (maybe twice) requiring suction. Heartrate went up (not as high as the night before). It is now back to normal.
So far today she has been awake and has been off oxygen.
So, she may be coming home today, tomorrow or in the next few days.
I am not sure whether to be concerned with the blood pressure thing or not. It is not something I check regularly at home. I do have a manual blood pressure cuff, but when we previously needed to do it for a medication I never really got the hang of it. Perhaps I need to invest in an automatic one. However a child size one is over $100 http://www.amazon.com/Professional-Pressure-Trending-Software-Pediatric/dp/B009FOHPFU/ref=sr_1_12?ie=UTF8&qid=1382712324&sr=8-12&keywords=pediatric+blood+pressure+cuff
I could maybe try an adult one...but from what I understand it is really important to have the correct cuff size. I hate to spend $100 on something that is not one of her regular problems.
The only thing that may relate to the high blood pressure is attention in the bathroom department.
I do need to figure out a new cathing schedule anyway...we have been doing every 4 hours during the day and every 6 hours at night. But that is not working because she just has a lot more output during the night. And we are not getting enough during the day. We are supposed to get between 200 and 500 each time. I don't want to get up more often at night and Ellie doesn't want to be woken up more frequently during the night either. At one point they mentioned putting in a foley (a cathedar that stays in for a few hours or days) overnight...but it really really increases the risk of infection (like we need any more risk of that!!!).
So here goes...
Not last night, but the night before (does that make you want to start jumping rope?..."Not last night but the night before...24 robbers came knocking at my door...") she had an elevated bloodpressure, but no elevated heartrate. It is puzzling. Everything else looked good. In the morning it came back down and resolved itself.
Yesterday during the day she did good. She was awake for about 75% of the day. Her vitals looked good all day. She needed oxygen all day (about 1.5 liters). I went to school yesterday morning and when I came back the nurse said "How do you feel about gong home?" I said quizzically, "Today???!?!?!?!" She said "No, but maybe tomorrow". (Tomorrow would be today (Fri)).
Last night she coughed several times (maybe twice) requiring suction. Heartrate went up (not as high as the night before). It is now back to normal.
So far today she has been awake and has been off oxygen.
So, she may be coming home today, tomorrow or in the next few days.
I am not sure whether to be concerned with the blood pressure thing or not. It is not something I check regularly at home. I do have a manual blood pressure cuff, but when we previously needed to do it for a medication I never really got the hang of it. Perhaps I need to invest in an automatic one. However a child size one is over $100 http://www.amazon.com/Professional-Pressure-Trending-Software-Pediatric/dp/B009FOHPFU/ref=sr_1_12?ie=UTF8&qid=1382712324&sr=8-12&keywords=pediatric+blood+pressure+cuff
I could maybe try an adult one...but from what I understand it is really important to have the correct cuff size. I hate to spend $100 on something that is not one of her regular problems.
The only thing that may relate to the high blood pressure is attention in the bathroom department.
I do need to figure out a new cathing schedule anyway...we have been doing every 4 hours during the day and every 6 hours at night. But that is not working because she just has a lot more output during the night. And we are not getting enough during the day. We are supposed to get between 200 and 500 each time. I don't want to get up more often at night and Ellie doesn't want to be woken up more frequently during the night either. At one point they mentioned putting in a foley (a cathedar that stays in for a few hours or days) overnight...but it really really increases the risk of infection (like we need any more risk of that!!!).
Wednesday, October 23, 2013
Coughing
I think she is starting to feel better from the pneumonia. Last night she was coughing (on her own without me gagging her) up stuff from her lungs. This is good. She probably coughed on her own 5 times during the night, then I would get up and suction her. She usually does pretty well when she coughs on her own to swallow the junk and not choke on it. But I figured I would help her get rid of it by sucking it out and often I would stimulate some more coughs without really meaning too (which is still a good thing).
I think the antibiotics must be working and helping her get rid of the pneumonia.
I really think she took a turn for the better yesterday afternoon and last night. Here's hoping. Yesterday marked 3 weeks inpatient.
The coughing and the suctioning meant that she was awake for a lot of the night and that she didn't wear her mask for a lot of the night. This means she may be tired today and/or tomorrow.
Yesterday she got phenol injections in her arms and thumbs. They put a needle into her muscles that are tight and inject the phenol medicine, this helps relax tight muscles. They also use botox for this reason, and you can do both. But it is too soon to do more botox on her, so they only did phenol. It is always the most painful on days 2 and 3. So this morning she woke up with a slightly elevated heartrate and slightly elevated temp. And that was even with giving her ibuprofen and acetaminophen around the clock in anticipation.
They did another CRP this morning, but I have not heard the results.
I think the antibiotics must be working and helping her get rid of the pneumonia.
I really think she took a turn for the better yesterday afternoon and last night. Here's hoping. Yesterday marked 3 weeks inpatient.
The coughing and the suctioning meant that she was awake for a lot of the night and that she didn't wear her mask for a lot of the night. This means she may be tired today and/or tomorrow.
Yesterday she got phenol injections in her arms and thumbs. They put a needle into her muscles that are tight and inject the phenol medicine, this helps relax tight muscles. They also use botox for this reason, and you can do both. But it is too soon to do more botox on her, so they only did phenol. It is always the most painful on days 2 and 3. So this morning she woke up with a slightly elevated heartrate and slightly elevated temp. And that was even with giving her ibuprofen and acetaminophen around the clock in anticipation.
They did another CRP this morning, but I have not heard the results.
Tuesday, October 22, 2013
So funny
I did the craziest thing today...
I looked ahead at my calendar for the week and realized that Ellie's baclofen pump refill (where they put more medicine into her baclofen pump) was scheduled for tomorrow. I called and left a message with their office ans asked if they could come up to the room and do the refill up here.
I heard back from her a few hours later and they reminded me that she no longer had a baclofen pump.
Ha-Ha-Ha!
She actually did a little better today. She was a little more awake. She was coughing up a bunch of junk. And mostly maintained her oxygen sats on 1 liter for most of the day.
I looked ahead at my calendar for the week and realized that Ellie's baclofen pump refill (where they put more medicine into her baclofen pump) was scheduled for tomorrow. I called and left a message with their office ans asked if they could come up to the room and do the refill up here.
I heard back from her a few hours later and they reminded me that she no longer had a baclofen pump.
Ha-Ha-Ha!
She actually did a little better today. She was a little more awake. She was coughing up a bunch of junk. And mostly maintained her oxygen sats on 1 liter for most of the day.
Pseudomonas
The sputum (junk coughed up from lungs) grew out pseudomonas. This is the bug she typically has when she has pneumonia. So it is confirmed that she does have pneumonia.
The new antibiotic (meropenum) should cover both infections.
She is doing OK today. She still needs a little oxygen and some suctioning. She is awake a tiny bit here and there.
I told her that we were shooting to be home by Halloween because she has spent 2 Halloweens in the hospital already and we don't want to make it 3.
The new antibiotic (meropenum) should cover both infections.
She is doing OK today. She still needs a little oxygen and some suctioning. She is awake a tiny bit here and there.
I told her that we were shooting to be home by Halloween because she has spent 2 Halloweens in the hospital already and we don't want to make it 3.
Monday, October 21, 2013
Fairly good day
She had fairly good day today Most of the day she was on 1/2 a liter of o2 (not much).
She dipped her sats a few times but not too badly or for too long.
She needed some suctioning, but not a ton.
Tonight they start the meropenum and will not give the night dose of valium. We will see how she does. I think she will do fine.
She dipped her sats a few times but not too badly or for too long.
She needed some suctioning, but not a ton.
Tonight they start the meropenum and will not give the night dose of valium. We will see how she does. I think she will do fine.
No change
Her x-ray was unchanged. They cannot confirm if it is pneumonia. It is either pneumonia or atelectasis (part of her lung collapsing).
But her CRP is up and her secretions are slight yellow, so it is likely pneumonia.
They are going to switch her antibiotic back to meropenum. The infection in her back (ecoli and klebsiela) are both susceptible to the meropenum and the meropenum also covers pseudomonas pneumonia (which she has had multiple times). Her current antibiotic (ertapenum) does not cover pseudomonas. One problem with the meropenum is that it is given 3-4 times per day versus the ertapenum is only twice a day. Oh well, it sounds like a reasonable plan.
They are not going to do a transfusion at this point. If her hematacrit (red blood cells) continue to drop they will consider it.
They are going to stop her nighttime dose of valium in hopes that this will help her not desat during the night and hope that this will enable her to cough at night. With the lowering of the valium so far we have been able to get her to cough better and she is slightly more awake.
When you can get her to cough she can do fairly well with her oxygen. But without a cough it is a struggle.
But her CRP is up and her secretions are slight yellow, so it is likely pneumonia.
They are going to switch her antibiotic back to meropenum. The infection in her back (ecoli and klebsiela) are both susceptible to the meropenum and the meropenum also covers pseudomonas pneumonia (which she has had multiple times). Her current antibiotic (ertapenum) does not cover pseudomonas. One problem with the meropenum is that it is given 3-4 times per day versus the ertapenum is only twice a day. Oh well, it sounds like a reasonable plan.
They are not going to do a transfusion at this point. If her hematacrit (red blood cells) continue to drop they will consider it.
They are going to stop her nighttime dose of valium in hopes that this will help her not desat during the night and hope that this will enable her to cough at night. With the lowering of the valium so far we have been able to get her to cough better and she is slightly more awake.
When you can get her to cough she can do fairly well with her oxygen. But without a cough it is a struggle.
Another chest x-ray
Last night she dipped her oxygen to 45% one time. I suctioned her and it slowly came back
up. Finally after 4 minutes of
suctioning (gagging) her I got her to cough, at which point she finally got
above 90% (within acceptable range).
That is a pretty long time being low and a pretty long time suctioning
her. I can do it better (on Ellie) than
the nurses or Respiratory Therapists.
They are too gentle on her and you have to be pretty aggressive.
Her hematocrit (red blood cells) is still low. This is why she has been pale the last few
days. It is at 27. It has not dropped lower, but has also not
gotten better. The red blood cells carry
oxygen throughout the body, so they thought it may be part of the reason that
she has been needed more oxygen. They
were originally planning to give her a blood transfusion today to help with
this, but then…
Her CRP was up today.
It was 1 point something yesterday (or maybe it was 2 days ago) and is
up to 4 point something this morning.
Which means she has another infection we are not covering. The low hematocrit would not lead to the CRP
being up.
Her last chest x-ray showed a little pneumonia in her left
lung behind her heart.
They are going to do a repeat chest x-ray this morning. I am fairly certain it will be worse. Her secretions are thicker and slightly
yellow (sign of infection). And her
oxygen needs have gone up (typical sign of pneumonia). The problem with chest x-rays and pneumonia
is that the x-ray lags behind. Meaning
physical symptoms are a better indicator of how the pneumonia is
progressing. You can be back to your
normal breathing/oxygen/activity level and the x-ray will still show pneumonia
for awhile.
They may still transfuse today, or they may not.
She is getting a new team of primary Dr.’s today. Sometimes that is good. They may have new opinions and new viewpoints
that the old team missed. But sometimes
it is bad. I liked the old team, and
sometimes I have clashes with people…so I may not like the new people, or they
may not be fully informed of what is going on, they often want you to tell the
whole story again (which is annoying, but I suppose helpful to them). We’ll hope for the best.
Sunday, October 20, 2013
Blessings
Today in church (here at PCH) I just started thinking about all of my blessings. We have had quite a few bad things happen during this hospital stay (I couldn't go on my trip to Chicago with Jason, our furnace died, We got a spider crack in our van windshield, our sewer backed up onto the carpet in the basement, our muffler (or something) is going out and the brakes on the van need to be replaced, my GI issues with pregnancy and being in the hospital and that's not to mention the stress of figuring out what is wrong with Ellie, then surgery, then withdrawal, finding medication dosages and now pneumonia).
So now that you know some of the "bad" I would like to share some of the blessings I have seen with you.
#1) The infection could have waited to reappear until after the new baby came when I would then be forced to choose between staying home with my baby or being here with Ellie. I would not want to bring a new baby to the hospital with me, but the baby would need to be fed. Right now the baby is protected by my immune system. What a blessing.
#2) We did not have to replace the furnace. We were able to repair it for only about $200. My Dad and brother had connections to a cheap honest guy.
#3) The majority of the time when the furnace was broken and the house was freezing Jason was gone to Chicago and the kids were at my parents so no one had to suffer (too much).
#4) They were able to find the part for the furnace. They typically only make parts for 20 years and our furnace is 18 years old.
#5) The first few days Ellie was here I was still hopeful that I could still go on my trip to Chicago with Jason. Ellie took a slight turn for the worse right at the critical moment I needed to decide whether to go or not. It allowed me to decide to stay and then things went crazy and it was sooooo good I was here. I wouldn't have been able to enjoy my trip anyway if things had gotten bad while I was gone.
#6) Ellie got sick the week before I went to Chicago, what if she hadn't gotten sick until I was already gone?
#7) Ellie was able to communicate that it was her abdomen (I thought belly...but close enough) that was hurting her so we were able to concentrate our search efforts there.
#8) Ellie continued to by symptomatic (fevers and CRP) in the hospital so they didn't just send us home blaming "over-reactive parent syndrome".
#9) Delta issued me a voucher (the dollar amount I paid for my ticket) that I can put towards another flight within 1 year. I really thought they would say "too bad, so sad." And now I get to go on a trip!
#10) We were able to find the infection on ultrasound even though we were unable to do an MRI. Ultrasound is not a great way to find infection...they really needed to do an MRI but couldn't due to a previous implanted device that she has.
#11) The spider crack in the windshield will definitely need to mean a whole new windshield, but it is in the corner of the passenger side...so you can still drive with it and our inspection isn't for almost a whole year. So there is no pressure to get it fixed immediately.
#12) The sewer backup only got small little corners of 2 areas of the carpet...so it will be easy to clean and dry out. It could be MUCH worse.
#13) We jointly own a carpet cleaner and carpet blower and carpet tools to relay the carpet...so we won't need to purchase or rent anything to fix the carpet.
#14) The same pipe that backed up the sewer this time had backed up not too long ago and I am pretty sure it is still under warranty from the guy I had come out last time (I think it was a 90 day guarantee) so that will be free to have him come out and clear it again.
#15) Jason looked at the muffler (or whatever it was) and said it will be a quick, easy, free fix with a little welding help from my brother. It is great having a handy husband and family!
#16) I had arranged for child care for while I was gone on my trip to Chicago, so that week I didn't have to worry about the kids. And then the next week my Mom (who is a teacher) had the whole week off from school (for UEA/Fall break) so she could help watch them that week. Plus my Mother-in-law happened to be visiting from Arizona so she could help with the kids also.
#17) I have great family and ward members who are always willing to lend a hand in watching the kids while I am in the hospital.
#18) The kids have been good while I have been away. It is really hard on them to be off their schedule and not have Mom there.
#19) Ellie is improving, albeit slowly.
#20) One of my night classes is unexpectedly done for the semester...I didn't realize it was a block class (1/2 semester) until the last day of class (this week). So that is a BIG relief. My other classes are pretty easy.
#21) My other teachers (for my remaining classes) have been very understanding and either letting me get out of assignments, or doing alternative (not in class) assignments.
#22) The Dr.'s and nurses for this hospital stay have overwhelmingly been good. I have really enjoyed being in NTU (comparatively).
#23) I have felt very comforted by the Lord from everyone's prayers and fasting on our behalf.
#24) I have THE BEST HUSBAND IN THE WORLD who manages the whole house and fixes things and takes care of the kids and makes meals and helps with homework and goes grocery shopping and gets the kids to their lessons and does laundry and EVERYTHING while I am in the hospital.
#25) I have the Gospel to help me maintain perspective and receive revelation and peace.
So now that you know some of the "bad" I would like to share some of the blessings I have seen with you.
#1) The infection could have waited to reappear until after the new baby came when I would then be forced to choose between staying home with my baby or being here with Ellie. I would not want to bring a new baby to the hospital with me, but the baby would need to be fed. Right now the baby is protected by my immune system. What a blessing.
#2) We did not have to replace the furnace. We were able to repair it for only about $200. My Dad and brother had connections to a cheap honest guy.
#3) The majority of the time when the furnace was broken and the house was freezing Jason was gone to Chicago and the kids were at my parents so no one had to suffer (too much).
#4) They were able to find the part for the furnace. They typically only make parts for 20 years and our furnace is 18 years old.
#5) The first few days Ellie was here I was still hopeful that I could still go on my trip to Chicago with Jason. Ellie took a slight turn for the worse right at the critical moment I needed to decide whether to go or not. It allowed me to decide to stay and then things went crazy and it was sooooo good I was here. I wouldn't have been able to enjoy my trip anyway if things had gotten bad while I was gone.
#6) Ellie got sick the week before I went to Chicago, what if she hadn't gotten sick until I was already gone?
#7) Ellie was able to communicate that it was her abdomen (I thought belly...but close enough) that was hurting her so we were able to concentrate our search efforts there.
#8) Ellie continued to by symptomatic (fevers and CRP) in the hospital so they didn't just send us home blaming "over-reactive parent syndrome".
#9) Delta issued me a voucher (the dollar amount I paid for my ticket) that I can put towards another flight within 1 year. I really thought they would say "too bad, so sad." And now I get to go on a trip!
#10) We were able to find the infection on ultrasound even though we were unable to do an MRI. Ultrasound is not a great way to find infection...they really needed to do an MRI but couldn't due to a previous implanted device that she has.
#11) The spider crack in the windshield will definitely need to mean a whole new windshield, but it is in the corner of the passenger side...so you can still drive with it and our inspection isn't for almost a whole year. So there is no pressure to get it fixed immediately.
#12) The sewer backup only got small little corners of 2 areas of the carpet...so it will be easy to clean and dry out. It could be MUCH worse.
#13) We jointly own a carpet cleaner and carpet blower and carpet tools to relay the carpet...so we won't need to purchase or rent anything to fix the carpet.
#14) The same pipe that backed up the sewer this time had backed up not too long ago and I am pretty sure it is still under warranty from the guy I had come out last time (I think it was a 90 day guarantee) so that will be free to have him come out and clear it again.
#15) Jason looked at the muffler (or whatever it was) and said it will be a quick, easy, free fix with a little welding help from my brother. It is great having a handy husband and family!
#16) I had arranged for child care for while I was gone on my trip to Chicago, so that week I didn't have to worry about the kids. And then the next week my Mom (who is a teacher) had the whole week off from school (for UEA/Fall break) so she could help watch them that week. Plus my Mother-in-law happened to be visiting from Arizona so she could help with the kids also.
#17) I have great family and ward members who are always willing to lend a hand in watching the kids while I am in the hospital.
#18) The kids have been good while I have been away. It is really hard on them to be off their schedule and not have Mom there.
#19) Ellie is improving, albeit slowly.
#20) One of my night classes is unexpectedly done for the semester...I didn't realize it was a block class (1/2 semester) until the last day of class (this week). So that is a BIG relief. My other classes are pretty easy.
#21) My other teachers (for my remaining classes) have been very understanding and either letting me get out of assignments, or doing alternative (not in class) assignments.
#22) The Dr.'s and nurses for this hospital stay have overwhelmingly been good. I have really enjoyed being in NTU (comparatively).
#23) I have felt very comforted by the Lord from everyone's prayers and fasting on our behalf.
#24) I have THE BEST HUSBAND IN THE WORLD who manages the whole house and fixes things and takes care of the kids and makes meals and helps with homework and goes grocery shopping and gets the kids to their lessons and does laundry and EVERYTHING while I am in the hospital.
#25) I have the Gospel to help me maintain perspective and receive revelation and peace.
VRP and x-ray
VRP (snot) is negative for anything (respiratory viruses).
Slight pnemonia in her left lung behind her heart.
Secretions are getting thicker and looking more yellow now.
Since lowering the valium at least we are able to get her to cough (by gagging her). This is good. She has to cough the junk up.
She is still sleepy and needing oxygen basically all day long.
They were going to lower the valium again to day. I need to check to make sure they did it.
I asked if the Dr.'s thought we would have this figured out within the week. They said maybe (but seemed unsure). I am hopeful that this will be our last week here.
Slight pnemonia in her left lung behind her heart.
Secretions are getting thicker and looking more yellow now.
Since lowering the valium at least we are able to get her to cough (by gagging her). This is good. She has to cough the junk up.
She is still sleepy and needing oxygen basically all day long.
They were going to lower the valium again to day. I need to check to make sure they did it.
I asked if the Dr.'s thought we would have this figured out within the week. They said maybe (but seemed unsure). I am hopeful that this will be our last week here.
Saturday, October 19, 2013
Lowering the valium
They ended up lowering the amount of valium she is getting each time to see if it helped with her breathing.
They did do a VRP (snot) and chest x-ray and I have not heard the results from either.
She has been off oxygen since 2:30 and it is now almost 5:30, so that is pretty good. (At least not as bad as this morning).
She keeps dropping her temp though and we have to warm her up.
They did do a VRP (snot) and chest x-ray and I have not heard the results from either.
She has been off oxygen since 2:30 and it is now almost 5:30, so that is pretty good. (At least not as bad as this morning).
She keeps dropping her temp though and we have to warm her up.
Junkedy junk junk junk
Her CRP is down to 1.9 today that is good.
Her breathing/junkiness/congestion is TERRIBLE!
She had many desaturation episodes during the night which led to a lot of suctioning.
This morning we had her on a nasal canula at 3 liters (she has only been needing 1/2 to 1 liter on previous mornings). I tried suctioning and couldn't bring her sats up. I put her bi-pap on (giving her breaths of air) and oxygen and still couldn't get her sats above 86.
The nurse called the respiratory therapist. He tried suctioning. She did 1 small cough for him which seemed to help. Right now she is satting OK with the bi-pap and O2 on...I don't dare touch her though because I am afraid she will desat again.
She is also sleepy today.
I asked the nurse to page the Dr.'s because I really think we need a chest x-ray and I want to get on top of this before it gets worse and we end up intubating her. That was at least an hour ago...I think we better page them again. I really think she has pnemonia. The only contradiction is that her CRP is not up...but maybe the antibiotics are masking the pnemonia or something. Or it may be a cold like rhinovirus...that is apparently running rampant through the hospital. All I know are... things in the breathing department are WAY worse today. And breathing is pretty important.
Rehab does not want to make any changes until we see what is going on with her lungs. I agree. Unless the baclofen and or valium are contributing by making her breathe more shallow...which is entirely possible.
Friday, October 18, 2013
She still looks a little pale to me
She still looks a little pale to me. I asked them to check her iron when they do lab draws in the morning. I am trying to remember if this was a symptom she had with the meropenum.
When she was on the meropenum last year it made her eosinophils high. Now being on the ertapenum (both in the penum family) her eosinophils are high. They are not going to switch her at this point, because she really needs this antibioitc...this is the one that they think will kill this nasty bug.
I will have to look back through the blog and see if she got pale with the meropenum.
Also her VitaminD is high so they are going to stop her multi-vitamin. Her vitamin D was high a few months ago that is why her nutritionist/dietician had us switch from calcium with D3 to plain calcium.
And her zinc is low. She normally gets a zinc supplement once a week and haven't been doing it for the 2 or 3 weeks she has been in here. I don't know if that is why it is low, or if it would have been low anyway.
When she was on the meropenum last year it made her eosinophils high. Now being on the ertapenum (both in the penum family) her eosinophils are high. They are not going to switch her at this point, because she really needs this antibioitc...this is the one that they think will kill this nasty bug.
I will have to look back through the blog and see if she got pale with the meropenum.
Also her VitaminD is high so they are going to stop her multi-vitamin. Her vitamin D was high a few months ago that is why her nutritionist/dietician had us switch from calcium with D3 to plain calcium.
And her zinc is low. She normally gets a zinc supplement once a week and haven't been doing it for the 2 or 3 weeks she has been in here. I don't know if that is why it is low, or if it would have been low anyway.
Improvement and not
Today they lowered her valium for the second time...they also increased her baclofen today.
She is more awake than she has been for weeks. (Still not fully awake, but definite improvement).
However, her tone is obviously worse. Her arms are tighter and are shaking (it looks like arthritis) (it is actually called clonus).
Grrrr...she is scheduled to get phenol injections next week in her arms...but I don't know if it will help enough...plus it wears off on her really fast. I feel like the higher valium was helping as far as tone, but she can't just sleep all day long.
THIS IS GOING TO BE TRICKY!
I really never realized how much I liked the baclofen pump, or how much it was helping.
Infectious disease gave me this schpeil (how in the world do you spell that...I even googled it and can't figure it out) on how they are not convinced that we could have gotten all of the infection (since it came back once). They are worried it will come back again. If it comes back again they are going to have to seriously consider removing the rods in her back. This would be BIG, BAD and UGLY. It is possible. But it is dangerous. And it is a BIG operation and a big recovery and it makes her spine weak.
She is more awake than she has been for weeks. (Still not fully awake, but definite improvement).
However, her tone is obviously worse. Her arms are tighter and are shaking (it looks like arthritis) (it is actually called clonus).
Grrrr...she is scheduled to get phenol injections next week in her arms...but I don't know if it will help enough...plus it wears off on her really fast. I feel like the higher valium was helping as far as tone, but she can't just sleep all day long.
THIS IS GOING TO BE TRICKY!
I really never realized how much I liked the baclofen pump, or how much it was helping.
Infectious disease gave me this schpeil (how in the world do you spell that...I even googled it and can't figure it out) on how they are not convinced that we could have gotten all of the infection (since it came back once). They are worried it will come back again. If it comes back again they are going to have to seriously consider removing the rods in her back. This would be BIG, BAD and UGLY. It is possible. But it is dangerous. And it is a BIG operation and a big recovery and it makes her spine weak.
Catch up
I will attempt to catch you up...Blogger would not let me post yesterday (because the internet is too slow in the hospital).
Her heartrate and blood pressure was up so they gave her a half of a bolus of IV fluids. This brought her heartrate down for the rest of the day (not to normal...just lower than it had been) and that night. However it also made her pale and she went to sleep and then required oxygen.
This was as far as I had caught you up to.
Then her heartrate went back up the next day and night We repeated the IV fluids just like we did before and we had exactly the same results...lower heartrate and pale and sleepy and needing o2.
Today they are going to try if her heartrate goes up that they will give her more fluids through her g-tube instead of IV.
For today she was awake from about 6:30 AM until 10 AM. Now she is already sleepy.
She has not had any fevers.
She is still congested.
They are going to try weaning the valium. The original plan that the rehab Dr. suggested was to give meds every 3 hours and giving them 7 times per day. That just sounds ridiculous. I currently give meds twice a day...going to 7 sounds like waaaaayyyyy too many times. So I started crying and he realized how overwhelming that seemed and so he is now working on a new plan of eventually giving only baclofen (without valium) if she can tolerate it only 4 times per day.
I guess I didn't realize how much the baclofen pump was helping. She has had one since she was 3 years old.
My main concerns right now are #1) finding a reasonable dose of medicine that we give only during daytime hours and a reasonable amount of times per day and that doesn't make her too sleepy #2) her congestion
I realize that #1 is asking a lot and is going to take some time. But I am sick of being here and I'm sure Ellie is too.
Her heartrate and blood pressure was up so they gave her a half of a bolus of IV fluids. This brought her heartrate down for the rest of the day (not to normal...just lower than it had been) and that night. However it also made her pale and she went to sleep and then required oxygen.
This was as far as I had caught you up to.
Then her heartrate went back up the next day and night We repeated the IV fluids just like we did before and we had exactly the same results...lower heartrate and pale and sleepy and needing o2.
Today they are going to try if her heartrate goes up that they will give her more fluids through her g-tube instead of IV.
For today she was awake from about 6:30 AM until 10 AM. Now she is already sleepy.
She has not had any fevers.
She is still congested.
They are going to try weaning the valium. The original plan that the rehab Dr. suggested was to give meds every 3 hours and giving them 7 times per day. That just sounds ridiculous. I currently give meds twice a day...going to 7 sounds like waaaaayyyyy too many times. So I started crying and he realized how overwhelming that seemed and so he is now working on a new plan of eventually giving only baclofen (without valium) if she can tolerate it only 4 times per day.
I guess I didn't realize how much the baclofen pump was helping. She has had one since she was 3 years old.
My main concerns right now are #1) finding a reasonable dose of medicine that we give only during daytime hours and a reasonable amount of times per day and that doesn't make her too sleepy #2) her congestion
I realize that #1 is asking a lot and is going to take some time. But I am sick of being here and I'm sure Ellie is too.
Wednesday, October 16, 2013
Sleepy and pale
Sleepy today and little pale. But heartrate is down below 110. I think she is still doing well. They are going to try weaning her valium tomorrow. Hopefully this will help with the sleepiness.
I don't want to jinx things
She seems to be improving last night and today.
They did a repeat ultrasound of her back last night to see if they could see any more infection...they couldn't see any.
Her C-diff came back negative.
She is not bloated or constipated any more.
Her congestion is not quite as bad. She is breathing without oxygen and maintaining her saturations.
She had a low grade fever last night at bedtime. We treated with ibuprofen only (no ice bath) and it came down.
No fevers during the night.
Heartrate yesterday was 130-160. During the night is was 80's and 90's. Today it has been 115. (Still high for her, but down which is good). Her blood pressure is also down.
Her CRP is down from 5 yesterday to 3 today.
Overall I am very encouraged. They are all good signs of improvement.
They did a repeat ultrasound of her back last night to see if they could see any more infection...they couldn't see any.
Her C-diff came back negative.
She is not bloated or constipated any more.
Her congestion is not quite as bad. She is breathing without oxygen and maintaining her saturations.
She had a low grade fever last night at bedtime. We treated with ibuprofen only (no ice bath) and it came down.
No fevers during the night.
Heartrate yesterday was 130-160. During the night is was 80's and 90's. Today it has been 115. (Still high for her, but down which is good). Her blood pressure is also down.
Her CRP is down from 5 yesterday to 3 today.
Overall I am very encouraged. They are all good signs of improvement.
Tuesday, October 15, 2013
Able to talk with her Primary Team
I was able to talk with her primary team to clarify all the "freaking out" I felt like they were doing last night.
They are concerned that she still has a fever and her heartrate and blood pressure is up. They are wanting to wait and see what happens in another day or two with the correct antibiotic. But they are concerned, that there may be another infection somewhere.
Urine looked good.
They do want to do an ultrasound of her back to see if they can see any more fluid collections (infection). That seems reasonable to me. I asked if we could look at the sore on her head (on the shunt tubing) (it looks like a pimple) that has been there for 2 weeks. Maybe it is more than we think it is. They said they don't think it will show anything, but they are going to order it.
They are going to give her some IV fluids to see if that will help her heart rate and blood pressure. Although her electrolytes are normal, they think she may need a little extra while she fights off this infection.
Her primary team did not order the surgery spot for today, that was orthopedic surgery and they didn't talk with me or with her primary team.
Infectious Disease told me yesterday that her wound had grown serratia, but they double checked and today they told me that was incorrect. It only grew the resistant ecoli and klebsiella.
Infectious disease is more worried with her vitals than her CRP...so they are worried too that there may be another infection going on somewhere.
I also suggested that maybe she has c-diff. Flagyl is the medicine they use to treat c-diff and she had been on that (but not for c-diff). They took her off flagyl a few days ago, so maybe we were treating c-diff without knowing it. They are sending a sample.
I also suggested that since her heartrate and temp went up in the morning, what about checking her cortisol. The Dr. said I have now earned my honorary medical degree. They said it was a good idea, but they still think it's an infection.
I feel like we are more on the same page this morning. We are all worried, but not freaking out (yet).
Today Ellie is sleepy. But when she has been awake she has not acted so drugged up (glazed over). So I think switching the baclofen back to every 6 hours instead of every 4 hours was a good move.
I still don't feel like I have had my question answered from orthopedic surgery...I have asked them specifically 3 times, but I don't think they understand what I am asking. On her previous back ultrasound it showed a fluid collection around the baclofen pump tubing and another possible fluid collection up higher along her spine/rods. I know they cleaned out around the baclofen pump tubing and they looked at L2-L5 on her spine (the baclofen pump tubing had infection, but the spine did not). But did they look at the fluid up higher. What vertebrae did the fluid collection show up on the ultrasound...was it within L2-L5? If not, I think there may be another pocket of fluid up higher. I have a feeling it was up higher. One reason I suspect this is that her previous rod/spine infection was in 2 locations on her back...one down low and one up a little higher. Infectious Disease has agreed to track down that information for me.
I asked rehab if too much or too little of the baclofen or valium could cause a fever or increased heartrate...they said possible withdrawal, but it is highly unlikely.
I asked if it could be pain since they stopped the oxycodone a while ago. They said they tried giving her some oxycodone last night and her heartrate did not decrease at all.
They are concerned that she still has a fever and her heartrate and blood pressure is up. They are wanting to wait and see what happens in another day or two with the correct antibiotic. But they are concerned, that there may be another infection somewhere.
Urine looked good.
They do want to do an ultrasound of her back to see if they can see any more fluid collections (infection). That seems reasonable to me. I asked if we could look at the sore on her head (on the shunt tubing) (it looks like a pimple) that has been there for 2 weeks. Maybe it is more than we think it is. They said they don't think it will show anything, but they are going to order it.
They are going to give her some IV fluids to see if that will help her heart rate and blood pressure. Although her electrolytes are normal, they think she may need a little extra while she fights off this infection.
Her primary team did not order the surgery spot for today, that was orthopedic surgery and they didn't talk with me or with her primary team.
Infectious Disease told me yesterday that her wound had grown serratia, but they double checked and today they told me that was incorrect. It only grew the resistant ecoli and klebsiella.
Infectious disease is more worried with her vitals than her CRP...so they are worried too that there may be another infection going on somewhere.
I also suggested that maybe she has c-diff. Flagyl is the medicine they use to treat c-diff and she had been on that (but not for c-diff). They took her off flagyl a few days ago, so maybe we were treating c-diff without knowing it. They are sending a sample.
I also suggested that since her heartrate and temp went up in the morning, what about checking her cortisol. The Dr. said I have now earned my honorary medical degree. They said it was a good idea, but they still think it's an infection.
I feel like we are more on the same page this morning. We are all worried, but not freaking out (yet).
Today Ellie is sleepy. But when she has been awake she has not acted so drugged up (glazed over). So I think switching the baclofen back to every 6 hours instead of every 4 hours was a good move.
I still don't feel like I have had my question answered from orthopedic surgery...I have asked them specifically 3 times, but I don't think they understand what I am asking. On her previous back ultrasound it showed a fluid collection around the baclofen pump tubing and another possible fluid collection up higher along her spine/rods. I know they cleaned out around the baclofen pump tubing and they looked at L2-L5 on her spine (the baclofen pump tubing had infection, but the spine did not). But did they look at the fluid up higher. What vertebrae did the fluid collection show up on the ultrasound...was it within L2-L5? If not, I think there may be another pocket of fluid up higher. I have a feeling it was up higher. One reason I suspect this is that her previous rod/spine infection was in 2 locations on her back...one down low and one up a little higher. Infectious Disease has agreed to track down that information for me.
I asked rehab if too much or too little of the baclofen or valium could cause a fever or increased heartrate...they said possible withdrawal, but it is highly unlikely.
I asked if it could be pain since they stopped the oxycodone a while ago. They said they tried giving her some oxycodone last night and her heartrate did not decrease at all.
5
CRP is down from 8.1 yesterday to 5 this morning. Yea!
Maybe the Dr.'s were freaking out about nothing?!?!?!
Her heart rate last night around 9 PM was in the 140's (when they were worried) (and it is high). It went down to the 120's (still high, but lower than 140) for most of the night with no fevers. Then this morning it is up to the 160's and she has a fever.
I still think if we just wait a day or two for the antibiotics we will see improvements.
I wouldn't mind doing an ultrasound of her back to check for infection...because an ultrasound is really noninvasive, however it doesn't give a really clear picture, but that is how they saw the infection before.
Maybe the Dr.'s were freaking out about nothing?!?!?!
Her heart rate last night around 9 PM was in the 140's (when they were worried) (and it is high). It went down to the 120's (still high, but lower than 140) for most of the night with no fevers. Then this morning it is up to the 160's and she has a fever.
I still think if we just wait a day or two for the antibiotics we will see improvements.
I wouldn't mind doing an ultrasound of her back to check for infection...because an ultrasound is really noninvasive, however it doesn't give a really clear picture, but that is how they saw the infection before.
Monday, October 14, 2013
Aren't parents the ones who are supposed to worry?
So I left tonight for a few hours and when I came back the Dr.'s had run a bunch of tests and have a spot saved for her in surgery tomorrow.
She had a chest x-ray to check for pnemonia (since she has been more congested) this morning. It was fine.
Her CRP was up this morning from 6 something yesterday morning to 8.1 this morning. But they told me yesterday that it may go up today. So this did not concern me. Apparently today they are worried about it. They will repeat the CRP tomorrow morning. I have a feeling that if it is up, she is going to fill that surgery spot.
Her heartrate is up. I suppose this concerns me a bit. But she has only been on the new antibiotic for 24 hours. She has had 3 doses. I thought we were giving it a day or two.
While I was gone they did an ultrasound of her abdomen. This one is puzzling. The infection was in her back. Why are they looking at her abdomen? The good news is...they didn't see anything. I think they made a mistake. Without admitting that they made a mistake, after talking to me, they are going to do an ultrasound of her back tomorrow.
While I was gone, they also ordered a urinalysis and urine culture. To see if she has another UTI. I don't think she does because she always has debris in her urine before one shows up and as far as I know her urine has been clear.
And yes, she is still having fevers...but once again...I thought we were giving the antibiotics time to kick in.
I asked if they had checked her electrolytes, because I swear that can raise your heartrate...the resident said no, that can't raise your heartrate. And no they haven't checked them. I will ask the Dr. tomorrow.
I suppose 1 concerning thing is that I had to vent her G-tube (she is unable to burp, so this is basically pulling the air out of her stomach like a burp) once yesterday and once today...which is unusual for Ellie. But doesn't seem like that big of a deal.
Her bloodsugar is OK. Her urine output is OK. She has been stooling.
One possible reason for the increased heartrate could be pain...we did stop the regularly schedule oxycodone today. But she hasn't seemed like she is in pain.
I don't know...I am just not as worried as the Dr.'s at this point. Yes, she has a bunch of stuff going on. No she is not looking better. But once again, she has only been on the correct antibiotic for 24 hours. Not that she is looking good. She is not, but I am holding out hope for the antibiotic to kick in, so that we won't have to do surgery. We will have to see what tomorrow brings.
She did have another desaturation seizure (Oxygen into the high 70's with bipap on oxygen being bled in) tonight while the resident was in the room.
She had a chest x-ray to check for pnemonia (since she has been more congested) this morning. It was fine.
Her CRP was up this morning from 6 something yesterday morning to 8.1 this morning. But they told me yesterday that it may go up today. So this did not concern me. Apparently today they are worried about it. They will repeat the CRP tomorrow morning. I have a feeling that if it is up, she is going to fill that surgery spot.
Her heartrate is up. I suppose this concerns me a bit. But she has only been on the new antibiotic for 24 hours. She has had 3 doses. I thought we were giving it a day or two.
While I was gone they did an ultrasound of her abdomen. This one is puzzling. The infection was in her back. Why are they looking at her abdomen? The good news is...they didn't see anything. I think they made a mistake. Without admitting that they made a mistake, after talking to me, they are going to do an ultrasound of her back tomorrow.
While I was gone, they also ordered a urinalysis and urine culture. To see if she has another UTI. I don't think she does because she always has debris in her urine before one shows up and as far as I know her urine has been clear.
And yes, she is still having fevers...but once again...I thought we were giving the antibiotics time to kick in.
I asked if they had checked her electrolytes, because I swear that can raise your heartrate...the resident said no, that can't raise your heartrate. And no they haven't checked them. I will ask the Dr. tomorrow.
I suppose 1 concerning thing is that I had to vent her G-tube (she is unable to burp, so this is basically pulling the air out of her stomach like a burp) once yesterday and once today...which is unusual for Ellie. But doesn't seem like that big of a deal.
Her bloodsugar is OK. Her urine output is OK. She has been stooling.
One possible reason for the increased heartrate could be pain...we did stop the regularly schedule oxycodone today. But she hasn't seemed like she is in pain.
I don't know...I am just not as worried as the Dr.'s at this point. Yes, she has a bunch of stuff going on. No she is not looking better. But once again, she has only been on the correct antibiotic for 24 hours. Not that she is looking good. She is not, but I am holding out hope for the antibiotic to kick in, so that we won't have to do surgery. We will have to see what tomorrow brings.
She did have another desaturation seizure (Oxygen into the high 70's with bipap on oxygen being bled in) tonight while the resident was in the room.
Forget about it
Forget that I said she was doing better.
Her congestion seems to be lower now. She seems to be clearing it well by coughing, but they are still going to do a chest x-ray to make sure she does not have pnemonia. They have actually had her off of oxygen for several hours now, so I am hopeful that she does not have pnemonia.
She is awake but has a really glazed over look and her eyes are really dilated. I think she is really drugged up. I think this may also explain the happy talking she is doing. I think she may be "high".
They are changing her baclofen from 15 mg every 4 hours to 20 mg every 6 hours. It will give her the same dosage overall for the day. But they said that baclofen stays in your system for 4-5 hours so it may be stacking up.
I also think she probably doesn't need the valium any longer. But they don't want to make too many changes until we get the infection under control.
Still having fevers, but they seem to be a lower grade fever (not as high).
She has done fine with no oxycodone so far today. No pain.
They are giving her ibuprofen and acetaminophen around the clock to control the fevers, but really the ice baths help more (although she doesn't like it).
It is funny having so many different teams of Dr.'s giving input. Infectious disease only wants a CRP done 2-3 times a week. Her primary team wants one every day. Rehab didn't want to change her baclofen. Her primary team wants to change it to the 6 hours (that I listed above). The primary team makes final decisions.
I think part of the problem is that we got new Dr.'s today...new rehab, new infectious disease.
The infection has grown out ecoli (the really resistant one), klebsiella and serratia. They are final results.
Remember I asked if this was MRSA and they said no. Well today I asked a clarifying question...it is MDRO (Multi Drug Resistant Organism). They always ask this before surgery...have they ever had MRSA or MDRO and I have always been able to say no. Now I have to say yes for the rest of her life. I don't know what that means exactly.
There is not an oral version of he erdapenum (her antibiotic) so their thinking right now would be to have her on erdapenum for a few weeks (4-6 weeks) and then switch to oral (g-tube) ciprofloxacin.
Her congestion seems to be lower now. She seems to be clearing it well by coughing, but they are still going to do a chest x-ray to make sure she does not have pnemonia. They have actually had her off of oxygen for several hours now, so I am hopeful that she does not have pnemonia.
She is awake but has a really glazed over look and her eyes are really dilated. I think she is really drugged up. I think this may also explain the happy talking she is doing. I think she may be "high".
They are changing her baclofen from 15 mg every 4 hours to 20 mg every 6 hours. It will give her the same dosage overall for the day. But they said that baclofen stays in your system for 4-5 hours so it may be stacking up.
I also think she probably doesn't need the valium any longer. But they don't want to make too many changes until we get the infection under control.
Still having fevers, but they seem to be a lower grade fever (not as high).
She has done fine with no oxycodone so far today. No pain.
They are giving her ibuprofen and acetaminophen around the clock to control the fevers, but really the ice baths help more (although she doesn't like it).
It is funny having so many different teams of Dr.'s giving input. Infectious disease only wants a CRP done 2-3 times a week. Her primary team wants one every day. Rehab didn't want to change her baclofen. Her primary team wants to change it to the 6 hours (that I listed above). The primary team makes final decisions.
I think part of the problem is that we got new Dr.'s today...new rehab, new infectious disease.
The infection has grown out ecoli (the really resistant one), klebsiella and serratia. They are final results.
Remember I asked if this was MRSA and they said no. Well today I asked a clarifying question...it is MDRO (Multi Drug Resistant Organism). They always ask this before surgery...have they ever had MRSA or MDRO and I have always been able to say no. Now I have to say yes for the rest of her life. I don't know what that means exactly.
There is not an oral version of he erdapenum (her antibiotic) so their thinking right now would be to have her on erdapenum for a few weeks (4-6 weeks) and then switch to oral (g-tube) ciprofloxacin.
More Fevers and a clogged PICC line
She is still having a fever every few hours.
One good thing about having a PICC line is they can pull her blood from it for tests and whatnot, so they don't have to keep poking her. But this morning it was clogged and they could pull back on it. So they put some TPA (anticlotting stuff) into it and let it sit for a while. Now it works again. Whew! That's all we need is a bad PICC line.
She is a little more awake today.
She is talking, and it seems like happy talking. (It is a sound from her throat, not words...just in case you were thinking a miracle had been performed.) This will be day 3 of doing this. She does it pretty much all day long. Since it is unusual...I worry that it may be pain or something else, but it sounds happy.
We are going to stop her regularly scheduled oxycodone today and go to a PRN (as needed) basis.
She is not as junky (congested) this morning.
Her VRP (snot) came back negative for everything. So she probably does not have a respiratory virus. Whew!
I think she looks a little better today.
One good thing about having a PICC line is they can pull her blood from it for tests and whatnot, so they don't have to keep poking her. But this morning it was clogged and they could pull back on it. So they put some TPA (anticlotting stuff) into it and let it sit for a while. Now it works again. Whew! That's all we need is a bad PICC line.
She is a little more awake today.
She is talking, and it seems like happy talking. (It is a sound from her throat, not words...just in case you were thinking a miracle had been performed.) This will be day 3 of doing this. She does it pretty much all day long. Since it is unusual...I worry that it may be pain or something else, but it sounds happy.
We are going to stop her regularly scheduled oxycodone today and go to a PRN (as needed) basis.
She is not as junky (congested) this morning.
Her VRP (snot) came back negative for everything. So she probably does not have a respiratory virus. Whew!
I think she looks a little better today.
Sunday, October 13, 2013
Clarification
The nurse was the one who told me that "they don't know what to put her on to kill this thing".
After I spoke with the Dr., I think the nurse was joking and I took it literally.
The Dr. said yes, it is a very resistant ecoli growing from the wound cultures. It is resistant to the cephalosporins which is what the rocephin is. But it is susceptible to the penum family (meropenum and ertapenum). Meropenum is a more specific antibiotic that does not kill as many bugs, so they chose to put her on ertapenum which kills more bugs.
I asked if they think this will kill the bugs, they said yes.
I asked if she has MRSA and they said no because that is for staph infection, hers is ecoli.
She is congested and has needed oxygen all day yesterday and today which is not normal. They sent of a VRP (snot) to see if she caught something while here in the hospital. It still sounds like it is mostly upper airway and not into her lungs, yet. We are going to up her vibrating vest from twice a day to three times a day.
They are hoping that getting her on the right antibiotics now will help her be less sleepy, get rid of the fevers and make her not be congested.
But it is possible that #1) she has a cold or flu or pnemonia developing #2) that we are giving her too much medication (baclofen, valium, etc) and that is making her sleepy.
Nothing is growing out of her blood cultures that they did yesterday.
She is not doing well. We hope that she will turn around in the next day or two with this new antibiotic.
The orthopedic surgeon left a spot open for her in his surgery schedule tomorrow (Monday) afternoon if he needed to open her back up again. But I don't think we will know by then. We need to give the new antibiotic more time.
They really need to invent a way to get blood cultures to grow more quickly. 48 plus hours is just too long. She has been on the wrong antibiotic because we have been waiting on the cultures to grow.
After I spoke with the Dr., I think the nurse was joking and I took it literally.
The Dr. said yes, it is a very resistant ecoli growing from the wound cultures. It is resistant to the cephalosporins which is what the rocephin is. But it is susceptible to the penum family (meropenum and ertapenum). Meropenum is a more specific antibiotic that does not kill as many bugs, so they chose to put her on ertapenum which kills more bugs.
I asked if they think this will kill the bugs, they said yes.
I asked if she has MRSA and they said no because that is for staph infection, hers is ecoli.
She is congested and has needed oxygen all day yesterday and today which is not normal. They sent of a VRP (snot) to see if she caught something while here in the hospital. It still sounds like it is mostly upper airway and not into her lungs, yet. We are going to up her vibrating vest from twice a day to three times a day.
They are hoping that getting her on the right antibiotics now will help her be less sleepy, get rid of the fevers and make her not be congested.
But it is possible that #1) she has a cold or flu or pnemonia developing #2) that we are giving her too much medication (baclofen, valium, etc) and that is making her sleepy.
Nothing is growing out of her blood cultures that they did yesterday.
She is not doing well. We hope that she will turn around in the next day or two with this new antibiotic.
The orthopedic surgeon left a spot open for her in his surgery schedule tomorrow (Monday) afternoon if he needed to open her back up again. But I don't think we will know by then. We need to give the new antibiotic more time.
They really need to invent a way to get blood cultures to grow more quickly. 48 plus hours is just too long. She has been on the wrong antibiotic because we have been waiting on the cultures to grow.
More fevers
More fevers yesterday and this morning.
I had mentioned that her arm with the PICC line was getting pink. So they thought she may be allergic to the rocephin. So they were going to start giving her a dose of benadryl before each dose.
However, then this morning they saw on her wound cultures that the bug was not susceptible to rocephin, so they were going to switch her back to zocin. I thought this was good news because it explained the fevers. The rocephin wasn't helping her at all. And it is a different bug than her spine infection was. Before we found this out I was starting to get worried that we would need to go back into surgery to find another pocket of yuckiness.
Then they came back a little later and said they were going to switch her antibiotic again. The bug that is growing is a VERY resistant ecoli. She is now on precautions (the Dr.s and nurses have to put on masks and gowns before entering her room). They are not sure what antibiotic to put her on that will kill this thing. For now they are putting her on ertapenum as her only antibiotic. I have never heard of this antibiotic and she has never had it that I know of. They have even asked me that when I leave the hospital room that I need to wash my hands so I don't spread this to the rest of the hospital. This sounds bad.
I have not talked with infectious disease yet today, but hope to talk with them tomorrow or later today.
More prayers please...to bring Ellie and our family comfort, that the Dr.'s may find a good solution and that Ellie's body will respond well to the treatments they come up with.
I had mentioned that her arm with the PICC line was getting pink. So they thought she may be allergic to the rocephin. So they were going to start giving her a dose of benadryl before each dose.
However, then this morning they saw on her wound cultures that the bug was not susceptible to rocephin, so they were going to switch her back to zocin. I thought this was good news because it explained the fevers. The rocephin wasn't helping her at all. And it is a different bug than her spine infection was. Before we found this out I was starting to get worried that we would need to go back into surgery to find another pocket of yuckiness.
Then they came back a little later and said they were going to switch her antibiotic again. The bug that is growing is a VERY resistant ecoli. She is now on precautions (the Dr.s and nurses have to put on masks and gowns before entering her room). They are not sure what antibiotic to put her on that will kill this thing. For now they are putting her on ertapenum as her only antibiotic. I have never heard of this antibiotic and she has never had it that I know of. They have even asked me that when I leave the hospital room that I need to wash my hands so I don't spread this to the rest of the hospital. This sounds bad.
I have not talked with infectious disease yet today, but hope to talk with them tomorrow or later today.
More prayers please...to bring Ellie and our family comfort, that the Dr.'s may find a good solution and that Ellie's body will respond well to the treatments they come up with.
Saturday, October 12, 2013
Drain removal
They just removed the drains from her back. They just did it in her room. It did not require any stitches or anything.
She has a fever.
Her arm with the PICC line is pink.
She is still asleep with occasional moaning. And yet her heart rate is up from 90's to 130's.
Patience...Patience...Patience.
I talked with the Infectious Disease Dr. about the rocephin (that she had blood sugar issues with). I had looked back at old blog posts and realized that the low blood sugar was not when we stopped the rocephin, but rather when we went from 2 doses a day to 1. I suggested when we decide to take her off the rocephin that we wean her off slowly. She said they don't do that with antibiotics. She said you are either on them or off. If you try to wean them then your body builds up a resistance to them. I guess that makes sense, but how are we going to get her off of the rocephin without it being dangerous to Ellie. She suggested that we will have to talk with her endocrinologist (Blood Sugar Dr.) when the time comes and perhaps we can raise her dose of proglycem. Well that sounds dangerous too because proglycem blocks insulin (insulin lowers blood sugar) so if we raise the proglycem then her blood sugars have the potential of becoming way too high. However low blood sugars are much more dangerous than high blood sugars. So...??!?!?!?! I'm not sure what we will do. I guess we will focus on getting rid of the infection and worry about the rest later.
She has a fever.
Her arm with the PICC line is pink.
She is still asleep with occasional moaning. And yet her heart rate is up from 90's to 130's.
Patience...Patience...Patience.
I talked with the Infectious Disease Dr. about the rocephin (that she had blood sugar issues with). I had looked back at old blog posts and realized that the low blood sugar was not when we stopped the rocephin, but rather when we went from 2 doses a day to 1. I suggested when we decide to take her off the rocephin that we wean her off slowly. She said they don't do that with antibiotics. She said you are either on them or off. If you try to wean them then your body builds up a resistance to them. I guess that makes sense, but how are we going to get her off of the rocephin without it being dangerous to Ellie. She suggested that we will have to talk with her endocrinologist (Blood Sugar Dr.) when the time comes and perhaps we can raise her dose of proglycem. Well that sounds dangerous too because proglycem blocks insulin (insulin lowers blood sugar) so if we raise the proglycem then her blood sugars have the potential of becoming way too high. However low blood sugars are much more dangerous than high blood sugars. So...??!?!?!?! I'm not sure what we will do. I guess we will focus on getting rid of the infection and worry about the rest later.
Too much baclofen?
Well, Yesterday she cried/screamed from 7 AM-4 PM.
Her nights have all been good (besides the 2 desaturation/seizures the other night).
Last night we gave her baclofen every 3 hours.
Today she is sleeping. She will moan a bit here and there but has not been crying or screaming.
I am wondering if we gave her too much baclofen. The rehab Dr. said the first 48 hours are te worst, so we are through that.
Oral baclofen can make you more sleepy than intrathecal (in her spinsl fluid). Oral baclofen has more systemic (whole body) effect. There is unfortunately no mathematical equation to convert intrathecal baclofen to oral, it is trial and error and trying to find a balance between having muscles relaxed, but not making the person too sleepy.
She is very very bloated. They had added in some miralax to help with constipation. I know that Miralax makes her bloated (even though it does clear her out), that is why she doesn't get it anymore. However we didn't want her to get too constipated so I agreed to let them give it to her with the stipulation that we only do it for a few days. We may have to stop...her stomach looks like she is going to explode. I also asked if the flagyl can make her bloated, infectious disease said it could.
Her nights have all been good (besides the 2 desaturation/seizures the other night).
Last night we gave her baclofen every 3 hours.
Today she is sleeping. She will moan a bit here and there but has not been crying or screaming.
I am wondering if we gave her too much baclofen. The rehab Dr. said the first 48 hours are te worst, so we are through that.
Oral baclofen can make you more sleepy than intrathecal (in her spinsl fluid). Oral baclofen has more systemic (whole body) effect. There is unfortunately no mathematical equation to convert intrathecal baclofen to oral, it is trial and error and trying to find a balance between having muscles relaxed, but not making the person too sleepy.
She is very very bloated. They had added in some miralax to help with constipation. I know that Miralax makes her bloated (even though it does clear her out), that is why she doesn't get it anymore. However we didn't want her to get too constipated so I agreed to let them give it to her with the stipulation that we only do it for a few days. We may have to stop...her stomach looks like she is going to explode. I also asked if the flagyl can make her bloated, infectious disease said it could.
Friday, October 11, 2013
New room
We finally moved out of ICU.
She is still in massive pain/withdrawal.
She developed a very small bed sore on her bum, w are keeping her off of it to try and get it to heal quickly. I am trying to avoid wound team getting involved if at all possible. They are not my favorite. Her Primary Dr. is being OK with it for now, but if it gets worse she said we will have to call in wound team.
It is so hard being unable to help Ellie and take away her pain. It gives me a glimpse of what Heavenly Father felt for Jesus when he was in so much pain in Gethsemane he plead with His Father "remove this cup (trial/pain) from me. Nevertheless not my will, but thine be done". God could not take away His pain, it had to happen in order that all mankind might return to live with him someday.
I also think Heavenly Father feels that for us in our trials. Whether the trial was brought about by our own choice, or just by our circumstances. He wishes he could take away our pain, but can see the beginning from the end and knows that all these things "shall be for our good".
I know that this surgery and all she is going through will help her in the end, but it is soooo hard seeing her struggle right now.
She is still in massive pain/withdrawal.
She developed a very small bed sore on her bum, w are keeping her off of it to try and get it to heal quickly. I am trying to avoid wound team getting involved if at all possible. They are not my favorite. Her Primary Dr. is being OK with it for now, but if it gets worse she said we will have to call in wound team.
It is so hard being unable to help Ellie and take away her pain. It gives me a glimpse of what Heavenly Father felt for Jesus when he was in so much pain in Gethsemane he plead with His Father "remove this cup (trial/pain) from me. Nevertheless not my will, but thine be done". God could not take away His pain, it had to happen in order that all mankind might return to live with him someday.
I also think Heavenly Father feels that for us in our trials. Whether the trial was brought about by our own choice, or just by our circumstances. He wishes he could take away our pain, but can see the beginning from the end and knows that all these things "shall be for our good".
I know that this surgery and all she is going through will help her in the end, but it is soooo hard seeing her struggle right now.
Results from culture
They have the results from the culture that they drew out with a needle (not the surgery cultures).
She grew out Ecoli and Klebsiella Pneumoniae. They are the same bugs that she had with her rod infection. They were probably sitting dormant on her tubing for a year and now started to grow for some reason.
They will be switching her antibiotics from vanc and meropenum to rocephin (ceftriaxone).
Rocephin is the antibiotic that she had problems with previously. Not while she was on it, but when we lowered it, her blood sugar was low (23). It was very complicated...here is a previous blog post describing what happened http://elliebellygirl.blogspot.com/2012/10/low-blood-sugar.html
They will also be starting her on Flagyl (hopefully temporarily) because it covers some bugs that rocephin does not, but meropenum does. Once they get back the final results from the surgery cultures they will know if they can stop the flagyl or not.
I asked how long she will need to be on antibiotics? They said probably 4-6 weeks of IV antibiotics followed by oral (g-tube) antibiotics for a total of 6 months. Gee, does that sound familiar? That is the same regimen they implemented for her spine infection last year. This better work this time. 6 months is a LONG LONG time to be on antibiotics. They said they may have done less, but since it is the same bugs as from the spine/rod infection, they are going to treat it like a spine/rod infection.
She grew out Ecoli and Klebsiella Pneumoniae. They are the same bugs that she had with her rod infection. They were probably sitting dormant on her tubing for a year and now started to grow for some reason.
They will be switching her antibiotics from vanc and meropenum to rocephin (ceftriaxone).
Rocephin is the antibiotic that she had problems with previously. Not while she was on it, but when we lowered it, her blood sugar was low (23). It was very complicated...here is a previous blog post describing what happened http://elliebellygirl.blogspot.com/2012/10/low-blood-sugar.html
They will also be starting her on Flagyl (hopefully temporarily) because it covers some bugs that rocephin does not, but meropenum does. Once they get back the final results from the surgery cultures they will know if they can stop the flagyl or not.
I asked how long she will need to be on antibiotics? They said probably 4-6 weeks of IV antibiotics followed by oral (g-tube) antibiotics for a total of 6 months. Gee, does that sound familiar? That is the same regimen they implemented for her spine infection last year. This better work this time. 6 months is a LONG LONG time to be on antibiotics. They said they may have done less, but since it is the same bugs as from the spine/rod infection, they are going to treat it like a spine/rod infection.
I updated the video
I updated the video I posted below (the saddest thing you'll see today)...so maybe it will work now. Let me know if it working or not.
Rehab
The rehab Dr.'s came by...we are going to up her regularly scheduled baclofen (from 10 mg every 6 hours to 15 mg every six hours), start giving valium regularly and add in an anti-itching medicine.
I asked if we would have to give her baclofen at home every six hours, they said maybe at first, but we would try to get to a 4 times a day during waking hours regimen.
They thought that her peeing may improve...I hope so.
We will be transferring to NTU as soon as they get all of their ducks in a row.
I asked if we would have to give her baclofen at home every six hours, they said maybe at first, but we would try to get to a 4 times a day during waking hours regimen.
They thought that her peeing may improve...I hope so.
We will be transferring to NTU as soon as they get all of their ducks in a row.
The saddest thing you'll see today.
This is what our morning is consisting of...and this is after baclofen, oxycodone, tylenol, valium .
Seriously, never drink alcohol or start drugs...you never want to do this. If you never start, you will never get hooked and you will never have to quit.
I am so grateful to The Church of Jesus Christ of Latter-Day Saints and my parents for teaching me about "The Word of Wisdom" which teaches us to avoid all addictive substances. For more information about the teachings of my church, please visit http://mormon.org/
Rough start
More pain/withdrawal/crying/moaning this morning.
Her tongue is swollen...I thought at first it was possibly an allergic reaction to the meropenum. But after talking with the Dr.'s they think it is from forcing the oral airway into her mouth last night when she coded.
The sore on her head along the shunt tubing looks improved to me...not completely healed, but improved.
Since treating this infection she has peed on her own 4 or 5 times! This is great! She has not peed on her own AT ALL for about 3 months. I hope it continues to improve.
She is slightly pink on her left side (where the baclofen pump tubing ran under he skin)...I hope it's OK and not more infection.
Her left eye is puffy due to the IV fluids. It takes her about 3 days off of IV fluids for her body to absorb the fluids when she gets puffy.
She had 1 more desaturation seizure at 4:45 this morning. It lasted about 30 seconds to 1 minute and she dropped into the low 80's. They did NOT press the code button this time. (I don't think she turned blue this time either though).
Her tongue is swollen...I thought at first it was possibly an allergic reaction to the meropenum. But after talking with the Dr.'s they think it is from forcing the oral airway into her mouth last night when she coded.
The sore on her head along the shunt tubing looks improved to me...not completely healed, but improved.
Since treating this infection she has peed on her own 4 or 5 times! This is great! She has not peed on her own AT ALL for about 3 months. I hope it continues to improve.
She is slightly pink on her left side (where the baclofen pump tubing ran under he skin)...I hope it's OK and not more infection.
Her left eye is puffy due to the IV fluids. It takes her about 3 days off of IV fluids for her body to absorb the fluids when she gets puffy.
She had 1 more desaturation seizure at 4:45 this morning. It lasted about 30 seconds to 1 minute and she dropped into the low 80's. They did NOT press the code button this time. (I don't think she turned blue this time either though).
Thursday, October 10, 2013
Today went from Awake to Pain to Sleeping to "Coding"
If you work in a hospital or are a frequent flyer of hospitals (like us) you know that "coding" is bad...very bad...almost the worst word you can say in a hospital, almost.
Jason stopped by on his way home from the airport (he has been on a business trip all week to Chicago. I was supposed to go with him, but had to cancel due to Ellie being in the hospital. Thankfully the airline is giving us a voucher that we can use within a year).
After saying "Hi" to Ellie, Jason and I walked out to his car so he could give me a present he brought back. We were only gone for 5-10 minutes. When we got back to Ellie's room in PICU (they still hadn't moved us to NTU) her room was filled with about 15 people.
We immediately knew something was wrong. They have pressed the code button before on her (I think twice before...but can't quite remember). They said she had dropped her sats to 10 and was blue so they pushed the code blue button. This makes an alarm sound through the entire hospital and assigned Dr.'s, nurses and respiratory therapists rush to the location to revive the person. I asked how long she had dropped her sats, they said about 2 minutes. They thought it was a seizure, so they had given her an emergency seizure med.
I am sure it was a seizure and it was just her typical really scary thing that she does at home.
I am glad we didn't hear the call come over the loud speaker with her room number...I really really hate that sound. Even when it is not my child that they are calling a code on...it makes me sad and sometimes it even makes me cry. I have been there. IT IS SCARY! Whenever I hear it, I wonder if the child will make it. It is is hard to hear, because it reminds me of the scary times we have had with Ellie.
It is the first time they have ever called a code on her that I have not been in the room with her. She must be growing up and branching out and wanting to do things on her own without her Mom being present (Just kidding!).
I think if I had been in the room I could have delayed them and told them this is normal, she does this, just give her a minutes, she will pop out of it. But they did the right thing since I was not here.
Actually it wasn't a full code, because her heart did not stop beating. It did drop from the 100's to the 60's though.
Anyway, they put an oral airway in (a large tube in her mouth), tilted her head back and bagged her (put a mask over her nose and mouth connected to oxygen, they squeeze an attached bag and it forces air into her lungs).
They had a hard time bagging her, but eventually her sats came up. This is the same thing that happens at home. She will have her bi-pap mask on (which is forcing breaths of air into her) and her sats drop. You can try turning up the oxygen, try tilting her head back, but her chest just does not rise and fall no matter what you do. Then all of a sudden she her sats will jump up to where they are supposed to be, because the seizure is done.
I have thought about giving her an emergency seizure med (like they did), but have never actually done it for one of these type of seizures.
Anyway, there's your excitement for the night.
She is doing fine now.
Today was a pretty bad/rough day. Tomorrow will be better (a least that's what I keep telling myself---and Ellie).
Jason stopped by on his way home from the airport (he has been on a business trip all week to Chicago. I was supposed to go with him, but had to cancel due to Ellie being in the hospital. Thankfully the airline is giving us a voucher that we can use within a year).
After saying "Hi" to Ellie, Jason and I walked out to his car so he could give me a present he brought back. We were only gone for 5-10 minutes. When we got back to Ellie's room in PICU (they still hadn't moved us to NTU) her room was filled with about 15 people.
We immediately knew something was wrong. They have pressed the code button before on her (I think twice before...but can't quite remember). They said she had dropped her sats to 10 and was blue so they pushed the code blue button. This makes an alarm sound through the entire hospital and assigned Dr.'s, nurses and respiratory therapists rush to the location to revive the person. I asked how long she had dropped her sats, they said about 2 minutes. They thought it was a seizure, so they had given her an emergency seizure med.
I am sure it was a seizure and it was just her typical really scary thing that she does at home.
I am glad we didn't hear the call come over the loud speaker with her room number...I really really hate that sound. Even when it is not my child that they are calling a code on...it makes me sad and sometimes it even makes me cry. I have been there. IT IS SCARY! Whenever I hear it, I wonder if the child will make it. It is is hard to hear, because it reminds me of the scary times we have had with Ellie.
It is the first time they have ever called a code on her that I have not been in the room with her. She must be growing up and branching out and wanting to do things on her own without her Mom being present (Just kidding!).
I think if I had been in the room I could have delayed them and told them this is normal, she does this, just give her a minutes, she will pop out of it. But they did the right thing since I was not here.
Actually it wasn't a full code, because her heart did not stop beating. It did drop from the 100's to the 60's though.
Anyway, they put an oral airway in (a large tube in her mouth), tilted her head back and bagged her (put a mask over her nose and mouth connected to oxygen, they squeeze an attached bag and it forces air into her lungs).
They had a hard time bagging her, but eventually her sats came up. This is the same thing that happens at home. She will have her bi-pap mask on (which is forcing breaths of air into her) and her sats drop. You can try turning up the oxygen, try tilting her head back, but her chest just does not rise and fall no matter what you do. Then all of a sudden she her sats will jump up to where they are supposed to be, because the seizure is done.
I have thought about giving her an emergency seizure med (like they did), but have never actually done it for one of these type of seizures.
Anyway, there's your excitement for the night.
She is doing fine now.
Today was a pretty bad/rough day. Tomorrow will be better (a least that's what I keep telling myself---and Ellie).
Sleeping
She has sleeping all afternoon.
Probably because #1) she loaded up on pain meds #2) she goes to sleep to avoid pain.
Her heartrate and repsirations are still up.
We are thinking maybe we need to focus on the withdrawal instead of the pain. We are going to add ativan which should help (I hope).
Probably because #1) she loaded up on pain meds #2) she goes to sleep to avoid pain.
Her heartrate and repsirations are still up.
We are thinking maybe we need to focus on the withdrawal instead of the pain. We are going to add ativan which should help (I hope).
Primary Children's is changing their name
This was pointed out on a FB group that I am a part of...I hadn't heard. Primary Children's Medical Center will be changing it's name to Primary Children's Hospital.
I always call it PCMC for short. Now I will have to call it PCH instead. This will take some getting used to.
Here is an article in the Deseret News.
"Selfie"
I forgot to post this "selfie" of Ellie and I right before she went in to surgery yesterday.
Stats
Also, our good friend A.G. came and visited us today. Somehow we started talking about how many surgeries Ellie has had...so we decided to count. This is not total hospitalizations, and it does not include dental (which she also has under sedation in the OR), not does it include times being intubated.
She has had 35 procedures done under anesthesia and has been under anesthesia 22 times. (Sometimes they do more than 1 thing per OR (operating room) visit such as put tubes in ears and lengthen tendons in feet, for example. So that is why the procedure number is higher).
She has had 35 procedures done under anesthesia and has been under anesthesia 22 times. (Sometimes they do more than 1 thing per OR (operating room) visit such as put tubes in ears and lengthen tendons in feet, for example. So that is why the procedure number is higher).
Massive pain...or is it withdrawal?
Ellie has been crying and moaning all morning. We have given her tylenol, oxycodone and morphine. Her heartrate and respirations (breaths per minute) are still high.
We have increased her regularly scheduled baclofen dose.
She is asleep now, but her heartrate is still high.
It is nearly impossible to tell if she is in pain or withdrawal. The rehab team says assume it is withdrawal and treat it, then treat the pain. They also said as long as you are still breathing OK, you really can't overdose on baclofen. There are recommended amounts, but you can go higher.
She does not cry or moan hardly ever...so you know this is really serious.
They are still planning on moving us back to NTU (Neuroscience Trauma Unit) at some point today .
We have increased her regularly scheduled baclofen dose.
She is asleep now, but her heartrate is still high.
It is nearly impossible to tell if she is in pain or withdrawal. The rehab team says assume it is withdrawal and treat it, then treat the pain. They also said as long as you are still breathing OK, you really can't overdose on baclofen. There are recommended amounts, but you can go higher.
She does not cry or moan hardly ever...so you know this is really serious.
They are still planning on moving us back to NTU (Neuroscience Trauma Unit) at some point today .
Pictures from this morning (Thurs 10/10/13)
Wide awake--more than normal!
Her belly wound (under the bandage) and the 2 drains they have coming out of her back. The drains will stay in up to 3 days, it depends on how much they are draining. She has to stay flat on her back for 24 hours, so I haven't seen the wound on her back.
Her PICC line on her right arm.
Close-up of the PICC.
A good night and wide awake
She had good vitals during the night. Her heartrate was actually down below 100. Repirations and oxygen were good. Her blood pressure was even down a bit (it was high 2 nights ago and all day yesterday).
They only gave her regularly scheduled doses of baclofen every 6 hours (other than the 1 dose I posted about earlier).
Her PICC line is in kind of a bad spot because it is a little bit on the back of her arm which will be resting on the mattress when she is laying down or on the wheelchair when she is sitting up, so that means we will have to be super conscious of it not getting bedsores from pressure.
She slept the whole night (probably due to anesthesia).
She is WIDE awake this morning. I mean WIDE awake. Her eyes are huge. The PICU Dr.'s think it may have to due with not getting the intrathecal (into her spinal fluid) baclofen. They think it may have been making her sleepy. Maybe we will like not having the baclofen pump?!?!??!?!?!?!?
Her arms are tighter than normal. They may give her an extra dose of baclofen now and then raise her regularly schedule dose.
These Dr.'s have stopped by already this morning PICU, Neurosurgery, Orthopedic Surgery, Infectious Disease...we are only missing the Rehab Dr.'s.
And I really liked the Orthopedic Surgery Dr. again. I think I will keep him.
Now that she is awake her heart rate and respirations have jumped up. We gave her some pain meds.
The Orthopedic surgeon said they gave her quite a bit of local anesthesia in the wounds to numb the areas. He said that lasts about 8 hours, so that has probably worn off.
They only gave her regularly scheduled doses of baclofen every 6 hours (other than the 1 dose I posted about earlier).
Her PICC line is in kind of a bad spot because it is a little bit on the back of her arm which will be resting on the mattress when she is laying down or on the wheelchair when she is sitting up, so that means we will have to be super conscious of it not getting bedsores from pressure.
She slept the whole night (probably due to anesthesia).
She is WIDE awake this morning. I mean WIDE awake. Her eyes are huge. The PICU Dr.'s think it may have to due with not getting the intrathecal (into her spinal fluid) baclofen. They think it may have been making her sleepy. Maybe we will like not having the baclofen pump?!?!??!?!?!?!?
Her arms are tighter than normal. They may give her an extra dose of baclofen now and then raise her regularly schedule dose.
These Dr.'s have stopped by already this morning PICU, Neurosurgery, Orthopedic Surgery, Infectious Disease...we are only missing the Rehab Dr.'s.
And I really liked the Orthopedic Surgery Dr. again. I think I will keep him.
Now that she is awake her heart rate and respirations have jumped up. We gave her some pain meds.
The Orthopedic surgeon said they gave her quite a bit of local anesthesia in the wounds to numb the areas. He said that lasts about 8 hours, so that has probably worn off.
Wednesday, October 9, 2013
PICU
So yes, she did end up in PICU. I don't know why they took her to PACU (post-op recovery) they normally go right to PICU. There was miscommunication between all of her Dr.'s she ended up in the wrong place. This has been the most disjointed hospital stay with the worst communication.
An hour and a half after surgery she woke up for a few hours. Had some shivering (withdrawal). Now she is getting her meds and going to sleep.
Since she is hard to read her communication I am afraid to go to sleep tonight because I am afraid they will be missing her cues. I'm sure I will go to sleep eventually, but right now I'm nervous. PICU will be better than on the floor however because at least the nurse is 1 on 1 or 1 on 2 and are basically in the room with her all of the time.
I do love the new PICU hospital rooms. They are roomy and actually have room for the wheelchair and storage for parents and child's things. And they now let a parent sleep in the room (they didn't used to let a parent stay if you were in ICU). It is much much much better. The weird thing is they don't let any visitors (other than parents) come between 6:30 and 8 PM or AM. Those are prime visiting hours.
An hour and a half after surgery she woke up for a few hours. Had some shivering (withdrawal). Now she is getting her meds and going to sleep.
Since she is hard to read her communication I am afraid to go to sleep tonight because I am afraid they will be missing her cues. I'm sure I will go to sleep eventually, but right now I'm nervous. PICU will be better than on the floor however because at least the nurse is 1 on 1 or 1 on 2 and are basically in the room with her all of the time.
I do love the new PICU hospital rooms. They are roomy and actually have room for the wheelchair and storage for parents and child's things. And they now let a parent sleep in the room (they didn't used to let a parent stay if you were in ICU). It is much much much better. The weird thing is they don't let any visitors (other than parents) come between 6:30 and 8 PM or AM. Those are prime visiting hours.
Sleepy
They took her to PACU (recovery) instead of PICU (ICU). I'm not sure if it's just because she is so sleepy, or they have decided not to send her to PICU, or they didn't get the message that she is going to PICU.
She is really sleepy and has not woken up yet, so I have not seen her yet.
She is really sleepy and has not woken up yet, so I have not seen her yet.
Out of the OR
She came out of the OR at 4:32 PM. I will get to see her at approximately 5:00ish. She will go straight to PICU and I will see her there.
Ortho done
So I met the new Orthopedic Surgeon at 4 PM. And dang it...he was really nice.
He said he only saw infection along the baclofen pump tubing tract. He looked along the spine from L2-L5 (so way down low). Her rods and spinal fusion are from T3 to pelvis (basically her entire back).
He did not see any infection along the spinal column or the rods or anywhere else. He left 2 drains in to drain any fluid. One in the infected spot (the baclofen pump tract). He saw another space, but it had no fluid or puss or anything in it. This is where he left the second drain. The drains will stay in for a few days and then be pulled out. She will not need to go back to the OR to pull out the drains and the holes will not need to be stitched up...they are very small drains and the holes will close on their own.
He said her spine and hardware look nice and solid.
I will not need to follow up with him unless I see signs of infection or have other orthopedic surgery needs.
He said he only saw infection along the baclofen pump tubing tract. He looked along the spine from L2-L5 (so way down low). Her rods and spinal fusion are from T3 to pelvis (basically her entire back).
He did not see any infection along the spinal column or the rods or anywhere else. He left 2 drains in to drain any fluid. One in the infected spot (the baclofen pump tract). He saw another space, but it had no fluid or puss or anything in it. This is where he left the second drain. The drains will stay in for a few days and then be pulled out. She will not need to go back to the OR to pull out the drains and the holes will not need to be stitched up...they are very small drains and the holes will close on their own.
He said her spine and hardware look nice and solid.
I will not need to follow up with him unless I see signs of infection or have other orthopedic surgery needs.
Neurosurgery done
Neurosurgery came and talked to me at about 2:50. He couldn't see any infection in the front. He acted like "I don't even know why we are doing this."
These were his exact words "I hope we did this for the right reasons."
Whatever.
These were his exact words "I hope we did this for the right reasons."
Whatever.
1:45
She went into surgery at approximately 1:45.
I really don't know how long it is slated for. The communication on this surgery has been TERRIBLE. In fact, I haven't even met the orthopedic surgeon...and won't meet him until after he has operated. Which also means, he has never met Ellie. That is bad. I'm glad to know he cares about Ellie enough to come to her room and meet her.
Needless to say unless he REALLY impresses me...he WILL NOT be Ellie's ongoing orthopedic surgeon. I know it is going to be hard to live up to Dr. Klatt (he was our favorite and now he moved to Colorado). But I have never NOT met a surgeon before surgery. That is pretty bad in my book.
She will be going to PICU at least overnight.
I really don't know how long it is slated for. The communication on this surgery has been TERRIBLE. In fact, I haven't even met the orthopedic surgeon...and won't meet him until after he has operated. Which also means, he has never met Ellie. That is bad. I'm glad to know he cares about Ellie enough to come to her room and meet her.
Needless to say unless he REALLY impresses me...he WILL NOT be Ellie's ongoing orthopedic surgeon. I know it is going to be hard to live up to Dr. Klatt (he was our favorite and now he moved to Colorado). But I have never NOT met a surgeon before surgery. That is pretty bad in my book.
She will be going to PICU at least overnight.
A good plan and a bad IV
Well another IV bites the dust. When they put the new one in we will be on number 6 in 8 days. Apparently the antibiotics make them go bad quickly. They will be placing a PICC line (more permanent IV stitched in place) while she is in the OR (Operating Room). She will need the PICC line to come home on IV antibiotics.
They are hoping to take her into the OR within an hour. I HIGHLY doubt it.
Neurosurgery will go first. They will make an incision over her existing baclofen pump (on her abdomen). They will pull out the pump and pull as much tubing as they can out that incision. Then they will cut off the tubing.
Neurosurgery will then be done. They will flip her over onto her stomach. Orthopedic Surgery will make an incision down low on her back where the tubing is. They will remove the tubing and clean out the infection. They will then look for the other fluid pocket. They may leave a wound suction device in the wound (which leaves the wound open).
The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU. I think ICu sounds like a good idea. She is going to have a lot going on.
I also talked to the rehab team about getting her in for Phenol injections. It is too soon for Botox, but she hasn't had phenol for over a year. Phenol helps her muscles relax. They said they would set it up.
Rehab has ordered oral baclofen every 6 hours after surgery. I hope we can change it before we go home. I am only good at doing meds twice a day...anything more than that is a PAIN!!!
Rehab asked what dose of oral baclofen she was on before she got her pump. I almost laughed out loud. She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.
I asked how long the pump needed to be out before replacing it. They said the soonest they have ever done is 3 months, but 6 months is recommended. Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.
Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.
They turned down the pump a second time this morning to help with the withdrawals. If we had more time we could wean her off slowly. But that is not an option.
We have given her a second dose of oral baclofen. She was really agitated and shaky.
She had a bath (her last for a while I'm sure).
Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.
As the IV team came in to replace her IV we discovered another problem she is going to have. I was committing to have her wear her arm braces for about 20 out of 24 hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out). But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.
One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria. We do not know exactly which bug. However, Ecoli is a gram positive bacteria and that is what her spine infection was last year. I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics. I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.
So I think everyone is thinking the two infections are related. We will see what grows when the culture grows out and what antibiotics it is susceptible to.
I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again. That would be almost worth all of this!
And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort. I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything. So maybe it's related to the infection. Maybe not.
They are hoping to take her into the OR within an hour. I HIGHLY doubt it.
Neurosurgery will go first. They will make an incision over her existing baclofen pump (on her abdomen). They will pull out the pump and pull as much tubing as they can out that incision. Then they will cut off the tubing.
Neurosurgery will then be done. They will flip her over onto her stomach. Orthopedic Surgery will make an incision down low on her back where the tubing is. They will remove the tubing and clean out the infection. They will then look for the other fluid pocket. They may leave a wound suction device in the wound (which leaves the wound open).
The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU. I think ICu sounds like a good idea. She is going to have a lot going on.
I also talked to the rehab team about getting her in for Phenol injections. It is too soon for Botox, but she hasn't had phenol for over a year. Phenol helps her muscles relax. They said they would set it up.
Rehab has ordered oral baclofen every 6 hours after surgery. I hope we can change it before we go home. I am only good at doing meds twice a day...anything more than that is a PAIN!!!
Rehab asked what dose of oral baclofen she was on before she got her pump. I almost laughed out loud. She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.
I asked how long the pump needed to be out before replacing it. They said the soonest they have ever done is 3 months, but 6 months is recommended. Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.
Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.
They turned down the pump a second time this morning to help with the withdrawals. If we had more time we could wean her off slowly. But that is not an option.
We have given her a second dose of oral baclofen. She was really agitated and shaky.
She had a bath (her last for a while I'm sure).
Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.
As the IV team came in to replace her IV we discovered another problem she is going to have. I was committing to have her wear her arm braces for about 20 out of 24 hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out). But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.
One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria. We do not know exactly which bug. However, Ecoli is a gram positive bacteria and that is what her spine infection was last year. I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics. I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.
So I think everyone is thinking the two infections are related. We will see what grows when the culture grows out and what antibiotics it is susceptible to.
I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again. That would be almost worth all of this!
And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort. I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything. So maybe it's related to the infection. Maybe not.
Surgery...sometime today
They are trying to find a spot for her on the surgery schedule. We are hoping sooner rather than later...her feeds have already been off enough time that she could go now. So the longer we wait, the longer we have to watch her for low blood sugar and she will be hungry.
I still do not know the actual plan of what they intend to do in surgery. And they may not know until they get in there.
She had some shakiness last night, I am assuming due to lowering the baclofen. We gave her 1 dose of oral baclofen.
She had another fever and another ice bath last night. We have been doing them for fevers over 99 F (her typical temp is 93-95.5F). I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever. Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer. I only take the temp in the ear that is up (which would be the colder temp).
This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths. I put chux (disposable absobant pads) under her. I get the wash clothes wet and squeeze about half of the water out. I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead. I set an alarm for 10 minutes and watch netflix in between. When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace. I recheck her temperature about every 20 or 30 minutes. When she gets down in the 95 F range I remove the washcloths and the wet chux.
Last night it was really smart of her. One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no. We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups. I went over and checked her temperature and lo and behold it was in the 95 range. She was done, she was not hot anymore.
Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now. The resident examined her, but did not look under her tongue. The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me". I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."
What a smartie!
Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need? She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.
My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal. I do not know if this is standard protocol or not.
I still do not know the actual plan of what they intend to do in surgery. And they may not know until they get in there.
She had some shakiness last night, I am assuming due to lowering the baclofen. We gave her 1 dose of oral baclofen.
She had another fever and another ice bath last night. We have been doing them for fevers over 99 F (her typical temp is 93-95.5F). I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever. Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer. I only take the temp in the ear that is up (which would be the colder temp).
This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths. I put chux (disposable absobant pads) under her. I get the wash clothes wet and squeeze about half of the water out. I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead. I set an alarm for 10 minutes and watch netflix in between. When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace. I recheck her temperature about every 20 or 30 minutes. When she gets down in the 95 F range I remove the washcloths and the wet chux.
Last night it was really smart of her. One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no. We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups. I went over and checked her temperature and lo and behold it was in the 95 range. She was done, she was not hot anymore.
Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now. The resident examined her, but did not look under her tongue. The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me". I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."
What a smartie!
Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need? She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.
My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal. I do not know if this is standard protocol or not.
Tuesday, October 8, 2013
Oh I forgot
I forgot in the last post to say that the Dr. came and lowered her baclofen pump (by radio frequencies) 20% tonight to try and help with the withdrawal if they pull it out tomorrow.
Baclofen pump
The baclofen pump is a hockey puck sized device surgically implanted in her abdomen. Tubing runs under the skin, around her side and inserts into her spinal fluid (CSF). The pump is filled with a medicine called baclofen and it continually puts the baclofen into her spinal fluid. The medicine helps decrease spacticity (tight muscles). In Ellie it helps with tight arms and tight legs. Her torso is not tight. She has spacticity due to brain abnormalities.
The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.
I do not know the exact plan. I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing. I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.
They will be once again taking her off of her feeds and prepping her for surgery. Although We do not know if surgery is actually going to happen or what time or what they will be doing.
There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal. #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective. #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out). #4) with the baclofen withdrawal it can increase seizures.
They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).
The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.
I do not know the exact plan. I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing. I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.
They will be once again taking her off of her feeds and prepping her for surgery. Although We do not know if surgery is actually going to happen or what time or what they will be doing.
There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal. #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective. #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out). #4) with the baclofen withdrawal it can increase seizures.
They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).
Pus
Her procedure is done. They were not able to get much out. They were trying to pull out some of the fluid they saw by the baclofen pump tubing.
They sedated her. They tried with a smaller needle and a larger needle and were not able to get much out.
But it was OBVIOUSLY pus. Which means obviously infection. The radiologist thinks it was from her rods.
They did not try sampling up higher on her spine where they thought they might have seen some more fluid.
I don't know whether to be happy or sad about the infection. I have a feeling it is opening a BIIIIIIIIIIGGGGGGG can of worms. On the other hand it is nice to have an answer.
They sedated her. They tried with a smaller needle and a larger needle and were not able to get much out.
But it was OBVIOUSLY pus. Which means obviously infection. The radiologist thinks it was from her rods.
They did not try sampling up higher on her spine where they thought they might have seen some more fluid.
I don't know whether to be happy or sad about the infection. I have a feeling it is opening a BIIIIIIIIIIGGGGGGG can of worms. On the other hand it is nice to have an answer.
CRP
CRP is down another point...6.5 today.
She had another fever during the night last night. I gave her an ice bath for an hour and it brought it down.
She had another fever during the night last night. I gave her an ice bath for an hour and it brought it down.
Monday, October 7, 2013
I am OK
I should really be sooooo stressed, worried and frustrated. But I feel calm and OK with everything. I think it is due everyone's prayers on our behalf, so thank you!
2 PM
She is scheduled to go under sedation to draw a fluid sample tomorrow at 2 PM. We have slowly restarted her feeds. She can have her formula until 5 AM, then they will switch her to apple juice until 10 AM, then IV fluids until the procedure.
Then it will take 48 hours to culture the fluid sample.
They will be able (hopefully) to tell some things more quickly from the sample before the culture grows out.
Then it will take 48 hours to culture the fluid sample.
They will be able (hopefully) to tell some things more quickly from the sample before the culture grows out.
New plan
They are going to sedate her and use ultrasound to guide a needle and draw out a sample of the fluid around the tubing. They are trying to get it done today so that her going without food all day wasn't done for no reason, but if they can't work it out they will do it tomorrow. (Then she can go a third day with no food in her tummy).
Then they will culture the fluid and see if they can get any information from it. Is it from her stomach, is it CSF fluid, is it baclofen, is it infected, what antibiotic is it susceptible to?
If they can show that it is infected, then the neurosurgeons will be more likely to pull the tubing and baclofen pump.
She has been doing pretty good today. She slept really fitfully last night so she has taken a few naps today. She had a fever this morning and pain. But after we got the fever calmed down she has done ok the rest of the day (no fever and no pain).
Then they will culture the fluid and see if they can get any information from it. Is it from her stomach, is it CSF fluid, is it baclofen, is it infected, what antibiotic is it susceptible to?
If they can show that it is infected, then the neurosurgeons will be more likely to pull the tubing and baclofen pump.
She has been doing pretty good today. She slept really fitfully last night so she has taken a few naps today. She had a fever this morning and pain. But after we got the fever calmed down she has done ok the rest of the day (no fever and no pain).
No surgery at this point
Neurosurgery came by and explained their reasoning for not wanting to do surgery.
In a way I can see their point.
He said that the fluid did not show up on the CT (which it didn't). An ultrasound is not a really clear picture (which it's not). So he is not convinced that this is the problem.
He says you can trace the baclofen pump tubing the entire way (on CT) and it is not broken.
It is a fairly big surgery to replace a baclofen pump (which it is). So he would hate to remove a working baclofen pump and then have to do a fairly large surgery to replace it.
I asked if we could just sample the fluid around the tubing to see if it is truly infected. He said you could, but then you risk introducing infection. And since she has been on antibiotics it might not grow anything anyway.
He said her CRP is improving (which it is). But I pointed out that it should be cut in half each day and she has been on IV antibiotics for almost 1 week now.
I asked so if she is on antibiotics for a week and a half to 2 weeks and has sill not improved, would you be willing to go in at that point? He said maybe, but he still wants some compelling evidence to prove that it is infected.
I asked him about pulling out the vagel nerve stimulator so we could a least get an MRI to get a better picture of what is going on. He said you could, but he wouldn't suggest it because you are just putting her through an unnecessary surgery.
He is being very conservative which surprises me coming from a cocky neurosurgeon that act like they can fix the world.
There is another test that he wants to do (her hospitalists had mentioned this test also). You pull out some of Ellie's own blood and pull out the white blood cells. You infuse the white blood cells with radiation and then inject them back into her. Then you do x-rays and see where the white blood cells go (since white blood cells job is to repair damaged cells). Where they go indicates where the infection is. It sounds like a good test to do.
In a way I can see their point.
He said that the fluid did not show up on the CT (which it didn't). An ultrasound is not a really clear picture (which it's not). So he is not convinced that this is the problem.
He says you can trace the baclofen pump tubing the entire way (on CT) and it is not broken.
It is a fairly big surgery to replace a baclofen pump (which it is). So he would hate to remove a working baclofen pump and then have to do a fairly large surgery to replace it.
I asked if we could just sample the fluid around the tubing to see if it is truly infected. He said you could, but then you risk introducing infection. And since she has been on antibiotics it might not grow anything anyway.
He said her CRP is improving (which it is). But I pointed out that it should be cut in half each day and she has been on IV antibiotics for almost 1 week now.
I asked so if she is on antibiotics for a week and a half to 2 weeks and has sill not improved, would you be willing to go in at that point? He said maybe, but he still wants some compelling evidence to prove that it is infected.
I asked him about pulling out the vagel nerve stimulator so we could a least get an MRI to get a better picture of what is going on. He said you could, but he wouldn't suggest it because you are just putting her through an unnecessary surgery.
He is being very conservative which surprises me coming from a cocky neurosurgeon that act like they can fix the world.
There is another test that he wants to do (her hospitalists had mentioned this test also). You pull out some of Ellie's own blood and pull out the white blood cells. You infuse the white blood cells with radiation and then inject them back into her. Then you do x-rays and see where the white blood cells go (since white blood cells job is to repair damaged cells). Where they go indicates where the infection is. It sounds like a good test to do.
No surgery?!?!?!
Her CRP is down from 8.4 yesterday to 7.2 today. So yes, it is improving...but they would still expect it to be cut in half each day.
Neurosurgery has still not come by today.
Her primary team of Dr.'s taking care of her (the hospitalists) came and said that neurosugery is dragging their feet. They are not sure they even want to go in and do surgery. I do not know what their thinking is.
The hospitalists think they should do surgery and I think they should do surgery. She has been on strong antibioitics for almost 1 week now, she is not improving like they think she should. Her CRP is not being cut in half each day. She is still having pain and fevers. She needs additional intervention. Even if they don't want to pull out the baclofen pump and tubing, then pull out her VNS so that we can actually do an MRI to get better information to prove to you that she needs surgery.
The orthopedic surgeons say they won't be able to get to the suspicious area on her spine from the incision that the neurosurgeons make (if the neurosurgeons decide to do surgery). So they are kind of dragging their feet too.
I am really surprised that Infectious Disease isn't adamant about pulling out the baclofen pump tubing and pump. They are leaving it up to neurosurgery. Weird.
The hospitalists say that they are trying to arrange for neurosurgery and orthopedic surgery to sit down together and come up with a plan. Yeah well...there is this concept floating out there called a "medical home". It is supposed to be just that...all of your specialists sitting down together (or at least conference calling) and discussing the patient and coming up with the best plan. IT JUST DOESN'T HAPPEN! It is a great plan in theory...but that's all it is...a theory.
I am sure in this case they will be able to sit down and work something out, but it's not going to happen fast. So they shouldn't have pulled Ellie off of her food to prep her for surgery if they didn't actually have a plan.
FRUSTRATING!
Neurosurgery has still not come by today.
Her primary team of Dr.'s taking care of her (the hospitalists) came and said that neurosugery is dragging their feet. They are not sure they even want to go in and do surgery. I do not know what their thinking is.
The hospitalists think they should do surgery and I think they should do surgery. She has been on strong antibioitics for almost 1 week now, she is not improving like they think she should. Her CRP is not being cut in half each day. She is still having pain and fevers. She needs additional intervention. Even if they don't want to pull out the baclofen pump and tubing, then pull out her VNS so that we can actually do an MRI to get better information to prove to you that she needs surgery.
The orthopedic surgeons say they won't be able to get to the suspicious area on her spine from the incision that the neurosurgeons make (if the neurosurgeons decide to do surgery). So they are kind of dragging their feet too.
I am really surprised that Infectious Disease isn't adamant about pulling out the baclofen pump tubing and pump. They are leaving it up to neurosurgery. Weird.
The hospitalists say that they are trying to arrange for neurosurgery and orthopedic surgery to sit down together and come up with a plan. Yeah well...there is this concept floating out there called a "medical home". It is supposed to be just that...all of your specialists sitting down together (or at least conference calling) and discussing the patient and coming up with the best plan. IT JUST DOESN'T HAPPEN! It is a great plan in theory...but that's all it is...a theory.
I am sure in this case they will be able to sit down and work something out, but it's not going to happen fast. So they shouldn't have pulled Ellie off of her food to prep her for surgery if they didn't actually have a plan.
FRUSTRATING!
Surgery bumped
For an unknown reason surgery has been bumped to 1 or 2 PM...which means she will probably go in at 4 PM. IT is frustrating because they switched her applejuice at midnight and then at 6 AM they switched her to IV fluids only. And they had her off of food all day yesterday "just in case" they needed to operate yesterday.
Neurosurgery hasn't even come by to day to talk to me about what they are actually going to do. I don't know if they are #1)just going to clean out the fluid #2) remove the tubing and clean her out #3) remove he tubing and pump and clean her out
I understand that they may not know until they get in and try to tell if it is infected...but at least come by and tell me that.
I asked Infectious Disease if this infection was related to her spine surgery last year. They said it could be, but since she has been off antibiotics since March it is less likely.
And I still haven't met the new orthopedic surgeon. I think I will feel better once I meet him. It is just frustrating knowing that you are trusting your child's life in this Dr.'s hands and you haven't even met them.
As you can tell I am starting to complain, which if you read my previous post means that I am stressed.
Neurosurgery hasn't even come by to day to talk to me about what they are actually going to do. I don't know if they are #1)just going to clean out the fluid #2) remove the tubing and clean her out #3) remove he tubing and pump and clean her out
I understand that they may not know until they get in and try to tell if it is infected...but at least come by and tell me that.
I asked Infectious Disease if this infection was related to her spine surgery last year. They said it could be, but since she has been off antibiotics since March it is less likely.
And I still haven't met the new orthopedic surgeon. I think I will feel better once I meet him. It is just frustrating knowing that you are trusting your child's life in this Dr.'s hands and you haven't even met them.
As you can tell I am starting to complain, which if you read my previous post means that I am stressed.
It's baaaaa...aaaack!
Her fever is back with a vengeance. Tylenol has not brought it down. Rags in ice water all aver her body has not brought it down. Next will be a cool bath.
She has also been in pain and grinding her teeth.
Under her tongue looks swollen and raw. I don't think it is self inflicted (from grinding her teeth) because her top teeth go over her bottom teeth. I thought maybe it is an allergic reaction to the meropenum. The intern came and looked at it (but of course he doesn't know anything, but pretends that he does), he will go talk with his attending.
Have I mentioned that I hate that this is a teaching hospital. I know it's necessary in order to become a Dr. But it is annoying as a patient (or patient's mother).
I have noticed several things about myself while in the hospital...when start complaining it means I'm stressed. When I ask for prayers it means I'm truly worried.
I do have to say I love NTU (Neuroscience trauma unit.) I think the Nurses here are so knowledgeable and so nice. The nurses really listen to me, believe what I say and pass it on to the Dr.'s. If I ask for something they make sure it gets done immediately. Nurses she has had previously will stop by and say hi and see how Ellie is doing. They try and remember my name and are good at remembering to call Ellie, "Ellie"...instead of Eleanor (indicating to me that they know her).
She has also been in pain and grinding her teeth.
Under her tongue looks swollen and raw. I don't think it is self inflicted (from grinding her teeth) because her top teeth go over her bottom teeth. I thought maybe it is an allergic reaction to the meropenum. The intern came and looked at it (but of course he doesn't know anything, but pretends that he does), he will go talk with his attending.
Have I mentioned that I hate that this is a teaching hospital. I know it's necessary in order to become a Dr. But it is annoying as a patient (or patient's mother).
I have noticed several things about myself while in the hospital...when start complaining it means I'm stressed. When I ask for prayers it means I'm truly worried.
I do have to say I love NTU (Neuroscience trauma unit.) I think the Nurses here are so knowledgeable and so nice. The nurses really listen to me, believe what I say and pass it on to the Dr.'s. If I ask for something they make sure it gets done immediately. Nurses she has had previously will stop by and say hi and see how Ellie is doing. They try and remember my name and are good at remembering to call Ellie, "Ellie"...instead of Eleanor (indicating to me that they know her).
Sunday, October 6, 2013
Surgery in the morning
Surgery in the morning at 11 AM. Neurosurgery will be there (they are the ones who do baclofen pump surgery) and orthopedic surgery will be there also.
I am saddened and a little scared because I have never met the orthopedic surgery Dr. Our old Dr. (Dr. Klatt) was our favorite Dr. and he moved to Colorado. So it will be the new Dr. that took his place (Dr. Hefflin).
I am still uncertain what neurosurgery plans to do. I am assuming pull out the baclofen pump and tubing. But neurosurgery has not checked back in with me to tell me the specific plan.
Orthopedic surgery does not want to remove the rods. They said they will look in the incision that Neurosurgery makes and see if the infection continues up her back. If they have to they will make a larger incision. But if they don't have to they are not going to open her up any more than they have to. If they see infection they will clean it out, but if they can't see anything they will just treat it with antibiotics.
I am fairly certain we will be going home with a PICC line and several months of antibiotics again. I really thought we were through with this whole spine infection thing.
If they remove the baclofen pump it will also mean taking oral baclofen (by g-tube) and risking her developing worse contractures than she already has.
I am saddened and a little scared because I have never met the orthopedic surgery Dr. Our old Dr. (Dr. Klatt) was our favorite Dr. and he moved to Colorado. So it will be the new Dr. that took his place (Dr. Hefflin).
I am still uncertain what neurosurgery plans to do. I am assuming pull out the baclofen pump and tubing. But neurosurgery has not checked back in with me to tell me the specific plan.
Orthopedic surgery does not want to remove the rods. They said they will look in the incision that Neurosurgery makes and see if the infection continues up her back. If they have to they will make a larger incision. But if they don't have to they are not going to open her up any more than they have to. If they see infection they will clean it out, but if they can't see anything they will just treat it with antibiotics.
I am fairly certain we will be going home with a PICC line and several months of antibiotics again. I really thought we were through with this whole spine infection thing.
If they remove the baclofen pump it will also mean taking oral baclofen (by g-tube) and risking her developing worse contractures than she already has.
Spa day
This morning Ellie and I put curlers in and painted our fingernails. She was feeling pretty good this morning, but is not feeling very good this afternoon. She is sleepy and has had some slight pain.
Good news...Bad news
I had good news this morning with her VRP being down. But then we got some not-so-good news this afternoon.
When they did the ultrasound they found some fluid along her baclofen pump tubing. It is more than likely infection. Neurosurgery is deciding what to do now. They have her off of any food (prepping her for surgery).
I am assuming that they will remove the baclofen pump and tubing and clean out any infection. Then at a later date they would have to do another surgery to replace the baclofen pump.
I do not know if this stems from the spine infection last year...I am assuming so.
I have been contemplating today if I would choose to do the spine surgery again because it was a big recovery, then got infected, then 6 months of antibiotics, and more than likely it is what caused her to no urinate on her own anymore, and now if this is related another infection and another surgery and more antibiotics. I think I still would as crazy as that sounds. I really like no putting a back brace on her everytime I want her to sit up, it also fused her spine so she won't grow taller, it is easier to get her dressed and move her around (she is not quite the sack of potatoes that she was before.)
When they did the ultrasound they found some fluid along her baclofen pump tubing. It is more than likely infection. Neurosurgery is deciding what to do now. They have her off of any food (prepping her for surgery).
I am assuming that they will remove the baclofen pump and tubing and clean out any infection. Then at a later date they would have to do another surgery to replace the baclofen pump.
I do not know if this stems from the spine infection last year...I am assuming so.
I have been contemplating today if I would choose to do the spine surgery again because it was a big recovery, then got infected, then 6 months of antibiotics, and more than likely it is what caused her to no urinate on her own anymore, and now if this is related another infection and another surgery and more antibiotics. I think I still would as crazy as that sounds. I really like no putting a back brace on her everytime I want her to sit up, it also fused her spine so she won't grow taller, it is easier to get her dressed and move her around (she is not quite the sack of potatoes that she was before.)
VRP is down
They switched her antibiotic last night and finally her VRP is down. It went from 21 yesterday morning to 8 this morning. Hooray! These were the results they were looking for all along.
So although they still don't know what infection they are fighting or where it is in the body the test results are vastly improved!
Finally a step in the right direction!
My guess is they won't find anything on ultrasound, it just doesn't give as clear of a picture as the MRI. But then I'm guessing that they will still think she has a spine infection and will want to treat her with antibiotics for an extended period of time (at home).
So although they still don't know what infection they are fighting or where it is in the body the test results are vastly improved!
Finally a step in the right direction!
My guess is they won't find anything on ultrasound, it just doesn't give as clear of a picture as the MRI. But then I'm guessing that they will still think she has a spine infection and will want to treat her with antibiotics for an extended period of time (at home).
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