It is our first day back home...it is 3:30 PM. Ellie is supposed to get her mid-day meds at around 2 PMish. And I missed it. I stink at mid-day meds. Morning and night meds...NO PROBLEM. Mid-day meds...Yuck. I am the worst.
I will give them now. But sheesh...I can't even do it on the first day home from the hospital.
In other news. I accidentally forgot to pick up her new antibiotic meds from the pharmacy at PCH. We were too excited to get home. So then I had to call and have them transferred to our local pharmacy. hahahahaha
Monday, December 31, 2018
ANSWERS!!!!!!
She has been smiley today and more alert. Her color looks better. She had 1 normal temp during the night. Heart-rate is better today.
But we have answers. She has a UTI (Urinary Tract Infection).
YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This makes me so happy! When something is wrong, having answers is ALWAYS better than not having answers. ALWAYS! I don't care how bad the diagnosis/prognosis is. It is better to know what monster you are dealing with. This allows you to prepare mentally/physically/spiritually to be able to deal with it the best you can.
The particular bug that grew out was Enterococcus it is a common UTI bug. The susceptibilities are even back. Which means once something grows out on culture they will drop little drops of different antibiotics on the growing bugs and see which antibiotics kill that bug. So they know exactly what antibiotics to prescribe. She will get amoxicillin. This will cover both the ear infection and the UTI. Plus she will continue her eardrops.
They did mention that being constipated increases chances of getting UTI. Which totally makes sense because her urine output is MUCH lower when she is constipated. So if the urine is sitting inside of her it is more likely to grow bugs.
I need pursue her new GI Dr. more aggressively to pin down a new Bowel regimen.
The UTI explains the fever and the stomach spasms (She has had stomach spasms before with UTI). But I think she was probably a little more likely to have stomach spasms because I hadn't been giving her mid-day dose of baclofen (muscle relaxer).
On the other hand we would not have brought her down to PCH if she hadn't had the stomach spasms. I would have taken her to her regular Pediatrician and he would have treated the ear infection and the UTI would have continued growing until the symptoms got worse.
She had had a clean UA and culture on Dec 5. (UA mean quick look at urine and culture means giving the urine more time and proper conditions to try and grow out bugs). So a UTI would not be likely since she just had a clean UA and culture earlier in the month. Once they saw the ear infection the ped would have stopped looking.
Lots of what-if's.
I commit to being better at her mid-day baclofen on days that she doesn't have school. I do feel guilty that I slacked off...but I am OK. I need to learn from my mistakes and do better from here on out. I can do that.
Tonight is New Years Eve. We have an annual party at our house. I need to get home to prepare. Jason and I decided we would push to bring Ellie home today. I think the team would have been OK with today or tomorrow. But I said "I want to bring her home today". They said "OK then that is our plan".
But we have answers. She has a UTI (Urinary Tract Infection).
YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This makes me so happy! When something is wrong, having answers is ALWAYS better than not having answers. ALWAYS! I don't care how bad the diagnosis/prognosis is. It is better to know what monster you are dealing with. This allows you to prepare mentally/physically/spiritually to be able to deal with it the best you can.
The particular bug that grew out was Enterococcus it is a common UTI bug. The susceptibilities are even back. Which means once something grows out on culture they will drop little drops of different antibiotics on the growing bugs and see which antibiotics kill that bug. So they know exactly what antibiotics to prescribe. She will get amoxicillin. This will cover both the ear infection and the UTI. Plus she will continue her eardrops.
They did mention that being constipated increases chances of getting UTI. Which totally makes sense because her urine output is MUCH lower when she is constipated. So if the urine is sitting inside of her it is more likely to grow bugs.
I need pursue her new GI Dr. more aggressively to pin down a new Bowel regimen.
The UTI explains the fever and the stomach spasms (She has had stomach spasms before with UTI). But I think she was probably a little more likely to have stomach spasms because I hadn't been giving her mid-day dose of baclofen (muscle relaxer).
On the other hand we would not have brought her down to PCH if she hadn't had the stomach spasms. I would have taken her to her regular Pediatrician and he would have treated the ear infection and the UTI would have continued growing until the symptoms got worse.
She had had a clean UA and culture on Dec 5. (UA mean quick look at urine and culture means giving the urine more time and proper conditions to try and grow out bugs). So a UTI would not be likely since she just had a clean UA and culture earlier in the month. Once they saw the ear infection the ped would have stopped looking.
Lots of what-if's.
I commit to being better at her mid-day baclofen on days that she doesn't have school. I do feel guilty that I slacked off...but I am OK. I need to learn from my mistakes and do better from here on out. I can do that.
Tonight is New Years Eve. We have an annual party at our house. I need to get home to prepare. Jason and I decided we would push to bring Ellie home today. I think the team would have been OK with today or tomorrow. But I said "I want to bring her home today". They said "OK then that is our plan".
Sunday, December 30, 2018
End of Day
Today she has been tired. She did not sleep well last night and she has been having still lots of seizures and stomach spasms. The stomach spasms have not been as large in "amplitude". They are just as long in time...but smaller in size.
I hope she sleeps well tonight.
I hope she sleeps well tonight.
Round and round we go
The Dr.'s just rounded. It is a Dr I really like today that we have had before! Yea!
Some possibilities of things we think may be going on....
* We recently changed bowel regimens and it is a terrible regimen (not working very well.) But we have not figured out the kinks yet. She has a lot of air in her large bowel. There is a big change on xray to the looks of her bowels from 2 months ago. So yes, we need to figure out a better bowel management plan, but I also think the air may be from the bowel cleanout I just did on Thur night/Fri morn. I gave her 2 doses of miralax and that always makes her have tons of air in her bowels.
*It is about time for her Aunt to visit
*She gets baclofen (medicine to relax her tight muscles) 3 X a day. I do not give the mid-day dose on the weekends. She always gets her morning and night baclofen...but mid-day is harder to remember. I haven't seen any change in her spacticity (tightness) by skipping weekends so I have been lazy. Since she has been off of school for Winter Break I have not been great at giving the mid-day dose. The Dr.'s think this may be the cause of the spasms. That she is having withdrawal. Great...Mom-guilt! Live and learn...right!?!?!?!?!?!?
Don't you hate it when your own stupidity affects someone else and you are mature enough to recognize it.
Some possibilities of things we think may be going on....
* We recently changed bowel regimens and it is a terrible regimen (not working very well.) But we have not figured out the kinks yet. She has a lot of air in her large bowel. There is a big change on xray to the looks of her bowels from 2 months ago. So yes, we need to figure out a better bowel management plan, but I also think the air may be from the bowel cleanout I just did on Thur night/Fri morn. I gave her 2 doses of miralax and that always makes her have tons of air in her bowels.
*It is about time for her Aunt to visit
*She gets baclofen (medicine to relax her tight muscles) 3 X a day. I do not give the mid-day dose on the weekends. She always gets her morning and night baclofen...but mid-day is harder to remember. I haven't seen any change in her spacticity (tightness) by skipping weekends so I have been lazy. Since she has been off of school for Winter Break I have not been great at giving the mid-day dose. The Dr.'s think this may be the cause of the spasms. That she is having withdrawal. Great...Mom-guilt! Live and learn...right!?!?!?!?!?!?
Don't you hate it when your own stupidity affects someone else and you are mature enough to recognize it.
History of stomach spasms
Ellie has had stomach spasms before for the following reasons...
UTI (Urinary Tract Infection)
Free Air in abdomen (twice)...you are not supposed to have air outside your bowels...but she did. The first time they went in to do exploratory surgery thinking that maybe it was her appendix. Her appendix looked fine, but they pulled it out while they were in there anyway...hahahaha
The other time she had free air in her abdomen with stomach spasms they did a repeat xray the next morning and the air was gone. If it had not been gone they would have to go in for exploratory surgery and see if maybe she had a perforated bowel or something.
And the big, bad nasty stomach spasms (that causes fear in my eyes) was a back infection. She had spinal rods placed and the incision got infected. About a week later they had to open her back up in the OR and clean out the infection. Then she had to come home with a PICC line and IV antibiotics and oral antibiotics for 6 months.
A whole year later she had the stomach spasms and they found a pocket of infection in her lower back that had been brewing. This resulted in removing her baclofen pump and tubing (they won't let us get another one because of this). And more PICC line and more IV antibiotics and more oral antibiotics.
The pocket of infection they found a year later was antibiotic resistant (MDRO...Mutil Drug Resistant organism...AKA superbug. Similar to MRSA except MRSA means the particular organism is staph...multi drug resistant staph organism...hers was not staph so that made it MDRO).
Which means that we had to be on "precautions" for 5 years without it returning. That meant that anytime we were in the hospital, anyone coming into her room had to wear a yellow gown, a surgical mask and gloves. It also meant Ellie cannot have a bath in the bathroom or leave her room at all. She could not go to the playroom or down to the cafeteria or anything.
We have been counting down the 5 years to being off precautions. This is our first hospital stay that we have been "precaution free". It feels great.
But then of course with her stomach spasming I am freaking out in my head that maybe the infection is back. The good news is that her blood work (white blood count etc) all looks good. So The Dr.'s don't think it is an infection. I really really really really really hope so.
UTI (Urinary Tract Infection)
Free Air in abdomen (twice)...you are not supposed to have air outside your bowels...but she did. The first time they went in to do exploratory surgery thinking that maybe it was her appendix. Her appendix looked fine, but they pulled it out while they were in there anyway...hahahaha
The other time she had free air in her abdomen with stomach spasms they did a repeat xray the next morning and the air was gone. If it had not been gone they would have to go in for exploratory surgery and see if maybe she had a perforated bowel or something.
And the big, bad nasty stomach spasms (that causes fear in my eyes) was a back infection. She had spinal rods placed and the incision got infected. About a week later they had to open her back up in the OR and clean out the infection. Then she had to come home with a PICC line and IV antibiotics and oral antibiotics for 6 months.
A whole year later she had the stomach spasms and they found a pocket of infection in her lower back that had been brewing. This resulted in removing her baclofen pump and tubing (they won't let us get another one because of this). And more PICC line and more IV antibiotics and more oral antibiotics.
The pocket of infection they found a year later was antibiotic resistant (MDRO...Mutil Drug Resistant organism...AKA superbug. Similar to MRSA except MRSA means the particular organism is staph...multi drug resistant staph organism...hers was not staph so that made it MDRO).
Which means that we had to be on "precautions" for 5 years without it returning. That meant that anytime we were in the hospital, anyone coming into her room had to wear a yellow gown, a surgical mask and gloves. It also meant Ellie cannot have a bath in the bathroom or leave her room at all. She could not go to the playroom or down to the cafeteria or anything.
We have been counting down the 5 years to being off precautions. This is our first hospital stay that we have been "precaution free". It feels great.
But then of course with her stomach spasming I am freaking out in my head that maybe the infection is back. The good news is that her blood work (white blood count etc) all looks good. So The Dr.'s don't think it is an infection. I really really really really really hope so.
No sleep for you
Last night and the night before she did not sleep. This is highly unusual since she gets a nightly sleeping pill.
They started ear drops in her left ear last night.
We got to bed at about 1 AM (because the ED and being admitted takes a century) (literally) and now we are back up at about 7 AM....but like I said Ellie didn't sleep and of course they come in the room 5 million times (literally) so I got woken up 5 million times (literally). hahahahahaha
Definitely need a nap today.
The tech today (the person that comes and does her vitals, helps with baths, changes her, etc...) has a cough. She was in herethis morning in the middle of changing Ellie and coughed a really sick sounding cough...twice. Grrrrr.....
She had a mask (a fluid-shield mask also known as a surgical mask) on but here is some news for you. Unfortunately that is not good enough (at least not for me...hahahaha). I am going to have to ask her to stay away from Ellie.
I told the nurse my concern and said that I didn't want the tech coming in here. I said I don't know if you can request another tech, otherwise I can do some extra work to help you. Whatever we need to do to make it happen. She said that was fine.
The fluid shield masks only stop fluid particles...not germs. So they will stop saliva or blood or snot. But cold and flu germs just fly on through the mask. That is why cancer patients (on chemotherapy) wear a different kind of mask...ones that actually block/kill germs.
One example of a cancer mask that actually kills germs is the cambridge mask. It has small enough holes to stop the bacteria and virus' (99.6 or greater) plus has carbon and silver to kill the virus' and bacteria. https://cambridgemask.com/blog/chemotherapy/
They started ear drops in her left ear last night.
We got to bed at about 1 AM (because the ED and being admitted takes a century) (literally) and now we are back up at about 7 AM....but like I said Ellie didn't sleep and of course they come in the room 5 million times (literally) so I got woken up 5 million times (literally). hahahahahaha
Definitely need a nap today.
The tech today (the person that comes and does her vitals, helps with baths, changes her, etc...) has a cough. She was in herethis morning in the middle of changing Ellie and coughed a really sick sounding cough...twice. Grrrrr.....
She had a mask (a fluid-shield mask also known as a surgical mask) on but here is some news for you. Unfortunately that is not good enough (at least not for me...hahahaha). I am going to have to ask her to stay away from Ellie.
I told the nurse my concern and said that I didn't want the tech coming in here. I said I don't know if you can request another tech, otherwise I can do some extra work to help you. Whatever we need to do to make it happen. She said that was fine.
The fluid shield masks only stop fluid particles...not germs. So they will stop saliva or blood or snot. But cold and flu germs just fly on through the mask. That is why cancer patients (on chemotherapy) wear a different kind of mask...ones that actually block/kill germs.
Here is a Fluid Shield pic I stole from the internet. These are not great at stopping germs
Back in the Saddle Again
Ellie was admitted to PCH today. Nothing big. I think we will be home soon. Cross fingers. Did you cross them? Do it. Cross your fingers. I am not joking here.
She has been having stomach spasms for a few weeks now. Pretty infrequently. So I have been keeping my eye on it.
Seizures have increased this week. Seizures increase when she is sick. So this is probably a side-effect of being sick, not an actual symptom.
Decrease of secretions when suctioning. Usually means junk is settling into lungs.
Elevated temp yesterday and today.
Increased heart rate since Wed. Probably due to constipation. I did a bowel cleanout yesterday. HR seems better today.
Needed O2 yesterday and today and normally doesn't.
Today while I was sitting by her at a funeral her stomach spasms were going on for about 75-80% of the time. Plus she had the elevated temp.
Something just seemed off.
We decided today was probably the best day to go to the Emergency Room.
When you have a complex kid you can sometimes plan what time or what day you want to go to the ER. hahahhahaha. I know it seems weird...it has the word EMERGENCY in the name. But I could have continued to take care of her for a few days and watched her at home without her dying I think. But we still wouldn't have any answers. So to get answers we needed to choose a time to come to the Emergency room.
For typical developing kids, when your kid is sick you just go to the pediatrician. And I do too with Ellie. But I have enough experience to know when it is a simple case and when the pcp would just send me to Salt Lake anyway. So in the more complicated cases I skip the pediatrician and go straight to Primary Children's.
We did a chest X-ray, abdominal xray, snot, blood, urine.
Everything was clear. Which is good I guess. But the entire time in the emergency room the spasms and seizures were way worse. It was pretty much non-stop...either a spasm or a seizure ALL THE TIME.
They admitted us. With no answers or ideas.
On the floor the resident did an exam and thought that her left ear looked like an ear infection. She called in her "High Commander" and they agreed.
So there's that. She has never had stomach spasms with an ear infection. But hey...compared to the evil things I was worried about...I would totally take it.
I am still worried that there may be more going on. But blood-work and everything looks good. So they are baffled for now.
We will see how the night goes.
She has been having stomach spasms for a few weeks now. Pretty infrequently. So I have been keeping my eye on it.
Seizures have increased this week. Seizures increase when she is sick. So this is probably a side-effect of being sick, not an actual symptom.
Decrease of secretions when suctioning. Usually means junk is settling into lungs.
Elevated temp yesterday and today.
Increased heart rate since Wed. Probably due to constipation. I did a bowel cleanout yesterday. HR seems better today.
Needed O2 yesterday and today and normally doesn't.
Today while I was sitting by her at a funeral her stomach spasms were going on for about 75-80% of the time. Plus she had the elevated temp.
Something just seemed off.
We decided today was probably the best day to go to the Emergency Room.
When you have a complex kid you can sometimes plan what time or what day you want to go to the ER. hahahhahaha. I know it seems weird...it has the word EMERGENCY in the name. But I could have continued to take care of her for a few days and watched her at home without her dying I think. But we still wouldn't have any answers. So to get answers we needed to choose a time to come to the Emergency room.
For typical developing kids, when your kid is sick you just go to the pediatrician. And I do too with Ellie. But I have enough experience to know when it is a simple case and when the pcp would just send me to Salt Lake anyway. So in the more complicated cases I skip the pediatrician and go straight to Primary Children's.
We did a chest X-ray, abdominal xray, snot, blood, urine.
Everything was clear. Which is good I guess. But the entire time in the emergency room the spasms and seizures were way worse. It was pretty much non-stop...either a spasm or a seizure ALL THE TIME.
They admitted us. With no answers or ideas.
On the floor the resident did an exam and thought that her left ear looked like an ear infection. She called in her "High Commander" and they agreed.
So there's that. She has never had stomach spasms with an ear infection. But hey...compared to the evil things I was worried about...I would totally take it.
I am still worried that there may be more going on. But blood-work and everything looks good. So they are baffled for now.
We will see how the night goes.
Tuesday, December 5, 2017
End of day Tues
 |
| This is a note Ace wrote for Ellie on her whiteboard |
She has been on about 1 liter of O2, which is fine...it's not a lot.
She has not been coughing too much or had too many secretions.
She has been sleepy, but neither of us has slept much these last 2 nights.
The bad things are...
She has spiked 2 fevers today which I am not thrilled about. They have mainly come down with tylenol.
She has had 5 seizures today.
***************
Possible reasons for seizures...
Possibly she didn't like the IV rocephin that she has been getting the last 2 days. She has had some slight reactions to rocephin in the past.
Or maybe she doesn't like the augmentin they switched her to today.
Or maybe they have her on the worng antibioitc altogether. I am seeing improvement, but not as much as I would expect by now.
Or she is just still sick and her body is tired of fighting.
*****************
I am still hopeful we may come home tomorrow. But not holding my breath after fevers and seizures.
Tues post (Day 3)
She spiked a fever today otherwise I think they might have sent us home today.
They are switching from IV antibiotics to oral today also...so another reason to stay one more night.
Last night was slightly rough...but not nearly as bad as the night before. We started on bipap and she desatted to the mid 80's. So I took bipap off and just had her do the nasal canula all night. She was super snorty and snotty all night. But didn't desat anymore. When she is sick she just does better with her sats off bipap. When she uses bipap it pushes the secretions down into lungs where she can't cough them up and then she desats.
She has been sitting on 1-2 liters all day today and doing well. She is super bloated also. But we can deal with that at home.
Now we play the waiting game...hopefully it will be a short game.
Syringes
One of my (Mom's) job while inpatient is to LEGALLY gather as many medical supplies as I can...ha ha! I am stocking up on syringes!
There are some things that insurance and Medicaid do not pay for. Here are a few...
Syringes (Medicaid will pay for 8 per month...which is a total joke)
Bed bath spongy wipes
Enemas
Supplies for enemas
So I am trying to stock up on syringes (that would be thrown away anyway) and spongy wipes.
There are some things that insurance and Medicaid do not pay for. Here are a few...
Syringes (Medicaid will pay for 8 per month...which is a total joke)
Bed bath spongy wipes
Enemas
Supplies for enemas
So I am trying to stock up on syringes (that would be thrown away anyway) and spongy wipes.
Monday, December 4, 2017
Triple whammy
Ellie is just inpatient at Primary Children's Hospital. She has a UTI (ecoli), parainfluenza (Croup---a virus), and a bacterial infection in her right lower lobe of her lungs.
Virus' are not treatable with antibiotics, but the other two are.
Let me back up the story to give you the full picture of what is going on.
In September she had a scope of her airway and they took a lung sample. She had making a weird Darth Vader breathing sound sometimes. It was dry sounding. But we weren't sure what it was. So pulmonology teamed up the ENT and they went into the OR together to have a look.
They found that her airway was tortuous ( twisty). This created ledges for secretions to pool within her upper airway. (Upper airway means nose, mouth, trachea). I suggested that this was possibly created by her scoliosis. She has rods from T3 down to her pelvis, but above that her spine is still very curved. The 2 Dr's said they hadn't thought of that and thought that was highly possible. They did not think we should fuse her neck.
We added a little more suctioning each day to try and clear these ledges of secretions.
They found that she had narrowing of her airway where she has scar tissue from her old trach site. But felt like it was OK and they didn't want to do anything about it.
The lung sample grew out strep. So she was treated with oral ( gtube) antibiotics.
These antibiotics helped a ton. She became so much more alert and smiley. I hadn't realized she was feeling bad, but after the antibiotics it was clear that she was feeling better.
She used to get an inhaled antibiotic ongoing for years. But we stopped it a while back thinking maybe she didn't need it anymore. I need to discuss it with pulmonilogy and see if she thinks we should start back up.
In mid Oct she came down with a cold. By Halloween day she was struggling to breathe. We brought her to PCH and were send home with antibiotics.
The antibiotics helped her improve and get off O2 (she is not normally on O2).
But she kept getting little colds off and on after that until now. So I'm not sure if she really ever fully recovered from that illness in Oct.
Two weeks ago her right ear was draining gunk. I did not treat it because most ear infections will clear up in their own. So it is better to watch for a few days and see if it can clear itself rather than becoming resistant to antibiotics. The ear did stop draining on it's own.
This week..
Wed- very sleepy
Thur- elevated HR, junky breathing, very little urine out, fever, needed O2
Fri- HR back to normal, breathing sounded improved, no fever, o2 able to be lowered a bit, urine lower than normal, seemed stable and improved from day before
Sat- about the sasme as Fri
Sat night- lots of suctioning, needed more o3 support and had a lot of desats ( o2 going too low)...rough night at home
Sunday- working hard to breathe, needed 3 liters o2 ( up from 1 liter on previous 2 days).
Sunday afternoon-Decided to come in to Emergency Department at PCT. Arrived at 2:45 pm. Met shock protocol (meaning lots of vitals are out of normal parameters...person needs immediate help). We love meeting shock protocol...it makes the ED go 2 or 3 times faster...ha Ha!
They ran snot, urine, chest xrays and blood.
Once they found the UTI and pneumonia they decided to start antibiotics and admit us.
Sun night- even more rough than Sat night. I was worried several times they were going to want to intubate (breathing tube into mouth down into throat). Lots of suctioning, lots of o2, trying switching back and forth between bipap and nasal canula.
At 2 AM I snuck her some mentholatum and afrin and sudafed...dont judge..ha ha!
It helped. She went to sleep at around 3 finally and we slept until about 9 am.
Mon morn- she had a fever and still does at 10 am, even after ibuprofen and acetaminophen.
Breathing is not as labored today.
Still pretty sick though.
After last night I am glad we brought her in.
It is frustrating that last winter when we stopped bipap...there were no pneumonias. This year we are trying to follow Dr orders and do bipap and we are back to multiple pneumonias. But if we don't do bipap then her lungs collapse like last spring. There is no good solution.
Thursday, November 2, 2017
We love antibiotics
I am so grateful for antibiotics. They have literally saved Ellie's life on more than one occasion.
The current antibiotic is helping so much. She is feeling much better.
She is breathing more easily. Her HR is back to normal. Her pain is gone. She is more alert. She has had a few smiles.
She is still coughing up junk (clearing out her lungs). But this is always a good thing with pneumonia.
I still have her on a low amount of O2. But we will start to wean her down...either later today or tomorrow.
Overall she is just feeling better than she was.
This was not a super scary bad case of pneumonia...we have definitely had worse.
As a friendly reminder...please get your flu shot! Please stay home if you are sick! Please wash your hands! Thank you! Cold and flu season is here folks!
The current antibiotic is helping so much. She is feeling much better.
She is breathing more easily. Her HR is back to normal. Her pain is gone. She is more alert. She has had a few smiles.
She is still coughing up junk (clearing out her lungs). But this is always a good thing with pneumonia.
I still have her on a low amount of O2. But we will start to wean her down...either later today or tomorrow.
Overall she is just feeling better than she was.
This was not a super scary bad case of pneumonia...we have definitely had worse.
As a friendly reminder...please get your flu shot! Please stay home if you are sick! Please wash your hands! Thank you! Cold and flu season is here folks!
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