She has had pain today. Now she is in bed and doing OK.
I put one of her headbands in today and while sitting in her wheelchair...you really couldn't even see her shaved spots/stitches...yea!
I asked the Dr. before we left...
What percentage is her brain/ventricles back to the way they were.
He said 80%
I asked if it could continue to improve?
He said he didn't know.
We will follow up with another CT scan and appt with Neurosurgery in 1 month.
I am hoping for continued improvement, but she is doing well even if there is no more improvement.
Wednesday, July 31, 2013
Tuesday, July 30, 2013
We get to come home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Everything looks good and the Dr. gave the thumbs up that we get to go home!
So excited!
I think I'm going to sleep for 2 days straight. You know those times when you have been so high strung and then when you can finally let your guard down and relax... you just crash...yeah, that's pretty much it.
So excited!
I think I'm going to sleep for 2 days straight. You know those times when you have been so high strung and then when you can finally let your guard down and relax... you just crash...yeah, that's pretty much it.
CT and X-rays are done
We did a CT and a series of x-rays (called a "shunt series") this morning to make sure everything looks good after her new shunt was placed last night.
When the Dr. comes around (who knows when) we will see what he thinks of the images and if we get to go home today.
She is awake and alert and doing well.
She is not in any pain that I can tell. We are giving her tylenol around the clock, but have not had to give any stronger pain meds.
When the Dr. comes around (who knows when) we will see what he thinks of the images and if we get to go home today.
She is awake and alert and doing well.
She is not in any pain that I can tell. We are giving her tylenol around the clock, but have not had to give any stronger pain meds.
Monday, July 29, 2013
10:10 PM and guess who's wide awake (and it's not Mom)
Miss Ellie is wide awake. She is doing well. She is not in pain yet, but her left eye is getting puffy again from IV fluids. We are now positioning her to keep her off that side.
Surgery throws everything off...she still hasn't had her regular night meds, because they have to order them all over again like she was a new patient.
I am hoping she will sleep well tonight.
Surgery throws everything off...she still hasn't had her regular night meds, because they have to order them all over again like she was a new patient.
I am hoping she will sleep well tonight.
She is back in her room
She is done with surgery.
They did the incision a little farther forward (closer to her hairline) which I am not thrilled with...but, what do you do?
She did well.
She is doing well.
She opened her eyes a bit, but is pretty wiped out.
She has 3 incisions. One on the right side of her head. One behind her right ear. And one on her abdomen.
They did the incision a little farther forward (closer to her hairline) which I am not thrilled with...but, what do you do?
She did well.
She is doing well.
She opened her eyes a bit, but is pretty wiped out.
She has 3 incisions. One on the right side of her head. One behind her right ear. And one on her abdomen.
Surgery done
Surgery is done. No complications. I have not seen her yet. We will get a CT in the morning and hopefully go home tomorrow.
Surgery today at unspecified time
Her shunt surgery will be today...but they don't know what time. So she has to be on IV fluids all day until they squeeze her in. And then she will get puffy and not pee for a few days (because of the IV fluids). Oh well.
And a smile from this morning.
Here is a pic from yesterday.
And a smile from this morning.
Sunday, July 28, 2013
Sleep
She slept until 4 AM last night, so I would call that a good nights sleep.
It would be nice if we could go home and come back Monday for surgery...but we can't because of the EVD (shunt draining out of her belly).
So today will just be hanging out.
She is doing well and is very stable.
I was hoping once we got the brain in a better position we would have the constant smiles we had a week ago. But to no avail. Back to her normal self. Normal is good too.
It would be nice if we could go home and come back Monday for surgery...but we can't because of the EVD (shunt draining out of her belly).
So today will just be hanging out.
She is doing well and is very stable.
I was hoping once we got the brain in a better position we would have the constant smiles we had a week ago. But to no avail. Back to her normal self. Normal is good too.
Saturday, July 27, 2013
Drain is gone
They came and pulled out her subdural drain and stitched up the hole (all done in her room).
I asked if surgery is Monday and all goes well, when could we go home? They said Tuesday. I will try not to get my heart set on it...but that would be great.
Her left eye was really puffy yesterday. I thought she was just holding onto her IV fluids from surgery. But today it is turning yellow...it is going to bruise. The nurse says that happens when they do surgery on the skull. So probably because they drilled that 1 inch diameter piece of skull out. The nurse said plastic surgery patients come out with black and blue eyes...even if they didn't operate on that part of the face.
Here is a picture of her eye (ignore the rats nest on top of her head). It is looking a touch better from 3 hours ago when she woke up. At that time she couldn't even open her eye a slit it was so swollen.
I asked if surgery is Monday and all goes well, when could we go home? They said Tuesday. I will try not to get my heart set on it...but that would be great.
Her left eye was really puffy yesterday. I thought she was just holding onto her IV fluids from surgery. But today it is turning yellow...it is going to bruise. The nurse says that happens when they do surgery on the skull. So probably because they drilled that 1 inch diameter piece of skull out. The nurse said plastic surgery patients come out with black and blue eyes...even if they didn't operate on that part of the face.
Here is a picture of her eye (ignore the rats nest on top of her head). It is looking a touch better from 3 hours ago when she woke up. At that time she couldn't even open her eye a slit it was so swollen.
Surgery Monday
During the night bloody fluid started leaking out of her subdural drain site out of her head. She also had a slightly elevated temperature. The nurse was pretty nervous/worried. They called the resident and he said it was fine. It is no longer leaking and her temp is fine this morning.
She slept good until about 1-ish...then after that it was hit and miss.
The right drain has stopped draining (this is the one they put in yesterday).
They did a repeat CT this morning and her right ventricle looks really good. He said it is 90% drained and the ventricles are almost back where they were originally.
They are going to pull out the subdural drain this morning.
The neurosurgeon doesn't think we need to do another CT on Monday. He is pleased with the results we have now. So her new shunt will be placed on Monday. It will be a new shunt (high pressure/anti-siphon) with all new tubing (under her skin). No more drains! Yea!
Friday, July 26, 2013
I think I figured out her sedation issues
**WARNING...more graphic pics at bottom***
I spoke with the anesthesiologist before her surgery today and told her to do exactly what they did last time...she woke up so well.
He looked back and said they had only given her sleeping gas (that wears off really fast) and nausea medication but NO pain meds.
He asked if she had been in pain...I said no.
So he did virtually the same thing. But he added an antibiotic.
She woke really well again this time. So I think it must be the narcotics (pain meds) that knock her out for so long. And she really does fine without them.
She has a SUPER high pain tolerance. She HARDLY EVER cries. So when she does, you know it is bad.
When you see her incision, you won't believe that she didn't need any pain meds. It is pretty graphic and scary. She might need some pain meds later on, but so far she is doing super.
I spoke with the anesthesiologist before her surgery today and told her to do exactly what they did last time...she woke up so well.
He looked back and said they had only given her sleeping gas (that wears off really fast) and nausea medication but NO pain meds.
He asked if she had been in pain...I said no.
So he did virtually the same thing. But he added an antibiotic.
She woke really well again this time. So I think it must be the narcotics (pain meds) that knock her out for so long. And she really does fine without them.
She has a SUPER high pain tolerance. She HARDLY EVER cries. So when she does, you know it is bad.
When you see her incision, you won't believe that she didn't need any pain meds. It is pretty graphic and scary. She might need some pain meds later on, but so far she is doing super.
She is awake after surgery!
Ouchy...I think it looks worse because they had to shave her head...if the incision was on her stomach (or elsewhere) I don't think it would look quite as scary.
Ellie's Business Cards
I am creating some "business cards" for Ellie. For when people come up and say "What's wrong with her?" or "What does she have?" I can just educate and be polite instead of thinking a rude response in my head. Then I can give them one of her business cards. Look through it and give me any suggestions before I send it to the printer.
Surgery done
Surgery is done. I have not seen Ellie yet.
He pulled the left drain...no problems.
He tried putting in the right subdural drain and went into the ventricle AGAIN (she has enormous ventricles...so I guess I shouldn't be too surprised). So he had to drill a larger hole in her skull...about an inch diameter...then he could see where he was going. He got the drain placed where it needed to go...in the subdural area...to drain the bloody fluid.
They replaced the piece of skull he had removed and held it in place with plates and screws.
I asked if it would set off X-ray, CT or MRI. He said no. I forgot to ask about metal detectors...I will have to ask.
So there might be a little more pain involved than originally anticipated.
He pulled the left drain...no problems.
He tried putting in the right subdural drain and went into the ventricle AGAIN (she has enormous ventricles...so I guess I shouldn't be too surprised). So he had to drill a larger hole in her skull...about an inch diameter...then he could see where he was going. He got the drain placed where it needed to go...in the subdural area...to drain the bloody fluid.
They replaced the piece of skull he had removed and held it in place with plates and screws.
I asked if it would set off X-ray, CT or MRI. He said no. I forgot to ask about metal detectors...I will have to ask.
So there might be a little more pain involved than originally anticipated.
Headbands
I bought Ellie some cute new headbands last night. Now for surgery this morning they say that the incision today will be 3 or 4 cm farther back on her head...which means they have to shave more of her head...now you tell me...how is a headband supposed to cover the back of her head???
Hopefully her remaining hair will cover it up.
Oh well, what do you do?
Hopefully her remaining hair will cover it up.
Oh well, what do you do?
Thursday, July 25, 2013
Surgery at 8:30 in the morning
They will pull the left subdural drain out completely and put in a new right subdural drain. I am guessing less than an hour surgery time.
Asleep and awake
She fell asleep for a few hours in the middle of the day today.
But now she is wide awake.
Here is a picture.
But now she is wide awake.
Here is a picture.
Improvement on left
Her left side is looking much better. There is still a tiny but of fluid...but if looks greatly improved. Yea!
Her right still has a lot of fluid.
Neurosurgery has not made final decisions, but here is what I think will happen.
Pull the left subdural drain out.
Tomorrow put in 1 or 2 new subdural drains.
Do new shunt on Monday.
Today she is awake, but not terribly alert.
Her eye is puffy from IV fluids.
I brushed her hair for the first time in a few days. Here is a before and after picture.
Yow-za!
That's better!
Gmail
I found out if you signed up to get an email when I post something on her blog and if you use gmail...the emails will be in your SOCIAL tab...so if you aren't seeing them...check there.
Sleep
She slept from 6:30 PM until 3:30 or 4:00 that's good. I would call that a good night's sleep. No drops in oxygen.
She is awake so far today.
Heartrate is back up a bit. It was looking so good for a few days (down into the 80's and 90's) but it is back up to the 115ish range. It's OK.
No high temps yet this morning.
We got quite a bit of urine out with her cathing so far this morning...yea.
No pain yet today.
So maybe she doesn't have an infection. Hallelejah.
I am fairly certain they will pull out the left subdural drain today...it is not draining ANYTHING.
She has another CT scheduled for this morning.
Her neurosurgeon said he could go in and put in new subdural drains tomorrow (Fri) if he needs to. And he is hoping to internalize the shunt (Put her new shunt with new tubing...all inside of her) on Monday.
I told him not to rush...that we wanted to get this as good as we could.
I asked him if he got 90% of the fluid out on the right in the OR, then what is showing up on CT? (Because it still looks like there is fluid there). He said he doesn't know. He said maybe he got a pocket and then another pocket filled it back in. He is not sure.
She is awake so far today.
Heartrate is back up a bit. It was looking so good for a few days (down into the 80's and 90's) but it is back up to the 115ish range. It's OK.
No high temps yet this morning.
We got quite a bit of urine out with her cathing so far this morning...yea.
No pain yet today.
So maybe she doesn't have an infection. Hallelejah.
I am fairly certain they will pull out the left subdural drain today...it is not draining ANYTHING.
She has another CT scheduled for this morning.
Her neurosurgeon said he could go in and put in new subdural drains tomorrow (Fri) if he needs to. And he is hoping to internalize the shunt (Put her new shunt with new tubing...all inside of her) on Monday.
I told him not to rush...that we wanted to get this as good as we could.
I asked him if he got 90% of the fluid out on the right in the OR, then what is showing up on CT? (Because it still looks like there is fluid there). He said he doesn't know. He said maybe he got a pocket and then another pocket filled it back in. He is not sure.
Wednesday, July 24, 2013
Not draining
The left subdermal drain has not drained AT ALL today. Bleck...they might pull it out tomorrow. Then what?...I don't know.
She slept the majority of the the day but woke up this evening. Hopefully she will sleep well tonight. So she can be awake tomorrow.
She is not urinating much. And she has a very slight temp. They hope that she doesn't have an infection starting.
She slept the majority of the the day but woke up this evening. Hopefully she will sleep well tonight. So she can be awake tomorrow.
She is not urinating much. And she has a very slight temp. They hope that she doesn't have an infection starting.
Restless
Some pain during the night...not as bad as last night. She did not sleep well last night AT ALL!!! I am guessing she will be sleepy today.
The said if she has webs on the left the brain should be able to push them out of the way and up against the skull. They said the left might drain really slowly because the blood is in all different little compartments within the web.
They will do another CT tomorrow (Thurs) and they might have to go in to the OR again and do another subdermal drain on the right (this time in the subdermal space instead of the ventricle.)
The said if she has webs on the left the brain should be able to push them out of the way and up against the skull. They said the left might drain really slowly because the blood is in all different little compartments within the web.
They will do another CT tomorrow (Thurs) and they might have to go in to the OR again and do another subdermal drain on the right (this time in the subdermal space instead of the ventricle.)
Tuesday, July 23, 2013
Pain
Major pain starting at 5 PM tonight. Talked with neurosurgery resident. He wanted to keep everything the same. Hopefully whatever the pain is from will go away over the night and she will be OK tomorrow.
CT results
Results of the CT...The right subdural drain (the one that was draining like crazy) was actually into the ventricle (not just the subdural space) and was draining the ventricle that we have been building back up over this last week. They removed that drain in her room earlier today. (This was also the side that the neurosurgeon felt like he got 90% of the fluid out in the OR.) So probably most of the bloody fluid is gone.
The left ventricular drain wasn't draining much. So they flushed it from the "hub" to the drain bag (not into her). It seems to be draining better now. It must have had a clot or something in the line.
She has been awake most of the day. I think she is feeling a little run down from surgery yesterday. Not in a ton of pain however. We gave her pain meds once.
The original EVD in her ventricle (her shunt) is not draining now...which is good...we want the ventricle filling up with fluid.
The left ventricular drain wasn't draining much. So they flushed it from the "hub" to the drain bag (not into her). It seems to be draining better now. It must have had a clot or something in the line.
She has been awake most of the day. I think she is feeling a little run down from surgery yesterday. Not in a ton of pain however. We gave her pain meds once.
The original EVD in her ventricle (her shunt) is not draining now...which is good...we want the ventricle filling up with fluid.
CT done
CT is done. Right subdural drain is still going crazy (draining a ton). I have not heard the results from the CT yet.
Earlier today I asked out of curiosity how much CSF we produce in a day. He said it varies from person to person. But on average 300-400 mL. Wow, that's quite a bit. Aren't our bodies amazing. We have this spinal fluid vital to our life and we don't even think about it or worry about it and our bodies just take care of things. Amazing. (400 mL is about 1 and 3/4 C).
Earlier today I asked out of curiosity how much CSF we produce in a day. He said it varies from person to person. But on average 300-400 mL. Wow, that's quite a bit. Aren't our bodies amazing. We have this spinal fluid vital to our life and we don't even think about it or worry about it and our bodies just take care of things. Amazing. (400 mL is about 1 and 3/4 C).
Seizures
***WARNING Pics at the bottom may be graphic for some audiences***
So now both subdural drains are draining bloody fluid (which is OK). The right one wasn't draining for the first 4 hours after surgery, but now is draining a TON! Usually they just let it drain and write down how much it has drained every 2 hours. But because the right one is draining a ton...they are letting it get up to 25 mL (which might take half of an hour) and then they clamp it for the remainder of the hour. (So they only want it draining 25 mL per hour).
The left drain was draining after surgery, but has slowed down to practically nothing.
Her shunt (the EVD from her belly that she has had this whole last week) is also not draining.
They will do a CT later this morning.
They think that the right one might have drained the subdural space (bloody fluid) and is now draining the ventricles. Hopefully the CT will tell them more.
She had one of her really big scary seizures last night. 2-3 minutes of turning blue and not breathing (even with bipap on and oxygen cranked up). Her oxygen was in the low 30's. Thankfully they listened to me and didn't press the code blue button and thankfully she came out of it.
Neurosurgery said when you mess with subdural space you can irritate the tissue and cause seizures.
The thing I am most concerned about right now is the right subdural drain draining so much...it might be draining the ventricles that we have been building up this whole last week. Blah...Grrr...Bleck!
So now both subdural drains are draining bloody fluid (which is OK). The right one wasn't draining for the first 4 hours after surgery, but now is draining a TON! Usually they just let it drain and write down how much it has drained every 2 hours. But because the right one is draining a ton...they are letting it get up to 25 mL (which might take half of an hour) and then they clamp it for the remainder of the hour. (So they only want it draining 25 mL per hour).
The left drain was draining after surgery, but has slowed down to practically nothing.
Her shunt (the EVD from her belly that she has had this whole last week) is also not draining.
They will do a CT later this morning.
They think that the right one might have drained the subdural space (bloody fluid) and is now draining the ventricles. Hopefully the CT will tell them more.
She had one of her really big scary seizures last night. 2-3 minutes of turning blue and not breathing (even with bipap on and oxygen cranked up). Her oxygen was in the low 30's. Thankfully they listened to me and didn't press the code blue button and thankfully she came out of it.
Neurosurgery said when you mess with subdural space you can irritate the tissue and cause seizures.
The thing I am most concerned about right now is the right subdural drain draining so much...it might be draining the ventricles that we have been building up this whole last week. Blah...Grrr...Bleck!
This is a pic from before surgery yesterday.
This is a pic right out of surgery...look how awake she is!!!
Pic taken this morning (Tues 7/23)
Her right subdural drain coming out of her head.
Her left subdural drain
A comparison of the clear CSF (Spinal fluid) that has been coming out of her ventricles (shunt) and the bloody fluid coming out of the subdural drain.
Monday, July 22, 2013
She woke up after surgery
Normally after anesthesia it takes 4-5 hours for her to wake up. I talked to the anesthesiologist about it and he said how did she do last week with the anesthesia they gave her. I said it still took 4-5 hours. He said "Wow, she got nothing last week. I will try to give her less"
When they called me back to see her she was WIDE awake. I have NEVER seen her so awake after surgery.
They shaved two spots on her head (one is the same as last week). Each has an 2 incisions and a tube coming out of the smaller incision. The Right one does not seem to be draining anything (that is the one he thought he got 90% of the fluid out in the OR). The Left one was draining a bloody fluid...now it seems to be draining blood.
There was bloody fluid all over her hair and bed (even though they operate on a different bed). We had to change her linens and cover everything with chux (Disposable pads) because her hair is still all bloody. They did try to clean her up...I just think it was really really messy.
She seems to be doing really well. She even had a few smiles after surgery.
It is going to be really hard to cover up TWO shaved spots on her head...I think I am going to have to go headband shopping. (Soft, and wide headbands). I might even have to make some instead if I can't find any to buy. So if you see any...let me know where!!!
I made the nurse write down what they gave her for anesthesia, so I could tell them next time... (I will put it here, just so I don't have to keep track of a piece of paper)
Propofol 10 mg
Lidocaine 4% 2 cc (double check with nurse tomorrow)
Remifert 50 (double check with nurse tomorrow)
Zofran 4 mg
Clinda 280 mg
When they called me back to see her she was WIDE awake. I have NEVER seen her so awake after surgery.
They shaved two spots on her head (one is the same as last week). Each has an 2 incisions and a tube coming out of the smaller incision. The Right one does not seem to be draining anything (that is the one he thought he got 90% of the fluid out in the OR). The Left one was draining a bloody fluid...now it seems to be draining blood.
There was bloody fluid all over her hair and bed (even though they operate on a different bed). We had to change her linens and cover everything with chux (Disposable pads) because her hair is still all bloody. They did try to clean her up...I just think it was really really messy.
She seems to be doing really well. She even had a few smiles after surgery.
It is going to be really hard to cover up TWO shaved spots on her head...I think I am going to have to go headband shopping. (Soft, and wide headbands). I might even have to make some instead if I can't find any to buy. So if you see any...let me know where!!!
I made the nurse write down what they gave her for anesthesia, so I could tell them next time... (I will put it here, just so I don't have to keep track of a piece of paper)
Propofol 10 mg
Lidocaine 4% 2 cc (double check with nurse tomorrow)
Remifert 50 (double check with nurse tomorrow)
Zofran 4 mg
Clinda 280 mg
Done with surgery
Done with surgery. I have talked with neurosurgeon. I have not seen her yet.
He thinks he got 90% of the bloody fluid from the right side (it shot out of her head). The left side he had a little more trouble with.
He said we will leave the EVD at the same level (it is at 23 for today). The depending on what the scan shows we will raise it to 25 tomorrow.
We will do a repeat CT in the morning.
He said he is glad we did this, he thinks it will help.
I am worried about that left side. He said if there are "webs" grown there they can fix it...but it is a more extensive surgery. I don't know if they will think it is worth it or not...or if they can get it "good enough" without that side being inflated as much.
We will just have to wait and see what the CT scans show over the next week or so.
This is always a nervewracking time for me (waiting to see her) she takes FOREVER to wake up from anesthesia. (Like 4 or 5 hours). They usually let me see her after an hour or so.
He thinks he got 90% of the bloody fluid from the right side (it shot out of her head). The left side he had a little more trouble with.
He said we will leave the EVD at the same level (it is at 23 for today). The depending on what the scan shows we will raise it to 25 tomorrow.
We will do a repeat CT in the morning.
He said he is glad we did this, he thinks it will help.
I am worried about that left side. He said if there are "webs" grown there they can fix it...but it is a more extensive surgery. I don't know if they will think it is worth it or not...or if they can get it "good enough" without that side being inflated as much.
We will just have to wait and see what the CT scans show over the next week or so.
This is always a nervewracking time for me (waiting to see her) she takes FOREVER to wake up from anesthesia. (Like 4 or 5 hours). They usually let me see her after an hour or so.
Taken into OR at 5 PM
She was taken into the OR at 5 PM...the Dr. estimated an hour (it's usually longer).
Surgery today
She had another CT today.
It showed some improvement in the ventricles, but not as much as the first few days.
Her regular neurosurgeon is back today.
There is some fluid outside of her brain. It is bloody fluid from her brain pulling away from her skull. He thinks this is stopping the ventricles from being able to get any larger. So he is going to put 2 drains in to drain the bloody fluid (bilateral subdural drains). The subdural drains will be two tubes (one on each side of her head) that drain into bags outside of her body. There is the possibility that this won't work. The neurosurgeon said the space could be filled in with webs or be more solid instead of fluid, that would require more extensive surgery. But he hopes (and thinks) that it is fluid.
I told you in a previous post that my hand drawn pictures were not very accurate (because I must have been in shock when I was shown them), so here are my more accurate ones. (I gave her too much brain matter before).
It showed some improvement in the ventricles, but not as much as the first few days.
Her regular neurosurgeon is back today.
There is some fluid outside of her brain. It is bloody fluid from her brain pulling away from her skull. He thinks this is stopping the ventricles from being able to get any larger. So he is going to put 2 drains in to drain the bloody fluid (bilateral subdural drains). The subdural drains will be two tubes (one on each side of her head) that drain into bags outside of her body. There is the possibility that this won't work. The neurosurgeon said the space could be filled in with webs or be more solid instead of fluid, that would require more extensive surgery. But he hopes (and thinks) that it is fluid.
I told you in a previous post that my hand drawn pictures were not very accurate (because I must have been in shock when I was shown them), so here are my more accurate ones. (I gave her too much brain matter before).
She is scheduled to go in to surgery at 3 or 4. I am nervous, but hopeful that this will work.
The Dr. said that he guesses it will take a week for the bloody fluid to drain.
Sunday, July 21, 2013
Mostly good night
She just doesn't sleep the whole night while she is here...because people keep bugging her. But she slept most of the night.
Before school got out, they thought that she was using one of her vocalizations (her fake hiccups) to mean that she needed attention in the bathroom department. I think they were right. Good job school!
So last night at 3:00 when she was awake she did her fake hiccups I had the nurse cath her.
I guess I need to clarify my stance on being so stubborn about not cathing during the night. This is only her 2nd UTI in several years. Yes they were only a few week apart. But I feel like we are still trying to figure out the best cathing system for her (and deep down I am hoping wither with the brain reinflation or the the lowering the baclofen pump that she will start going on her own again).
We were only cathing 3 times a day, and that was not enough (since she got another UTI) so OK...let's increase the number.
So I think my new idea is....cath her 5 times a day with no cathing at night (unless she asks for it).
If she gets another UTI...then yes, I think the next step would be that we have to cath her at night. I just don't think we are there yet.
Her urine output has been within the limits that urology wants...they said they wanted 300-500 or less. As an example...yesterday she had out...125 (cath), 388 ( herself), 400 (cath), 150 (cath), 200 (cath), 100(cath). So the numbers look good.
A different urology resident came by (not the one that I have been clashing with) and he said it sounded fine. But yes, if she has another UTI we would need to do something about the night.
One of my friends that has a child with disabilities mentioned that we might not get up and go to the bathroom during the night, but we are also not getting fed tube feeds during the night. Crap, I honestly hadn't thought of that. She is on continuous feeds for 23 hours a day. I will have to see how I would feel about going back to daytime feeds only. We switched for her hypoglycemia. I might be willing to try it. But would have to monitor her blood sugar for a while to see if she could tolerate it. Typically everyone's blood sugar goes up in the morning anyway, so she might be OK. I don't know.
Before school got out, they thought that she was using one of her vocalizations (her fake hiccups) to mean that she needed attention in the bathroom department. I think they were right. Good job school!
So last night at 3:00 when she was awake she did her fake hiccups I had the nurse cath her.
I guess I need to clarify my stance on being so stubborn about not cathing during the night. This is only her 2nd UTI in several years. Yes they were only a few week apart. But I feel like we are still trying to figure out the best cathing system for her (and deep down I am hoping wither with the brain reinflation or the the lowering the baclofen pump that she will start going on her own again).
We were only cathing 3 times a day, and that was not enough (since she got another UTI) so OK...let's increase the number.
So I think my new idea is....cath her 5 times a day with no cathing at night (unless she asks for it).
If she gets another UTI...then yes, I think the next step would be that we have to cath her at night. I just don't think we are there yet.
Her urine output has been within the limits that urology wants...they said they wanted 300-500 or less. As an example...yesterday she had out...125 (cath), 388 ( herself), 400 (cath), 150 (cath), 200 (cath), 100(cath). So the numbers look good.
A different urology resident came by (not the one that I have been clashing with) and he said it sounded fine. But yes, if she has another UTI we would need to do something about the night.
One of my friends that has a child with disabilities mentioned that we might not get up and go to the bathroom during the night, but we are also not getting fed tube feeds during the night. Crap, I honestly hadn't thought of that. She is on continuous feeds for 23 hours a day. I will have to see how I would feel about going back to daytime feeds only. We switched for her hypoglycemia. I might be willing to try it. But would have to monitor her blood sugar for a while to see if she could tolerate it. Typically everyone's blood sugar goes up in the morning anyway, so she might be OK. I don't know.
Saturday, July 20, 2013
Continued improvement
The CT yesterday showed continued improvement. The neurosurgeon on call for the weekend said it may take a month for the ventricles to reinflate...I hope not...that is a long time.
She did not sleep well last night...she was not unhappy or anything, just awake alot.
She had a good day today. She got a bed bath and was happy and awake.
They really don't want her going 12 hours without cathing...but I really don't want to wake her up. So far they are doing it my way. I know that it is not ideal. I am thinking of saying if she wakes up on her own, then you can cath her. That seems fine while we are in the hospital...but does not solve the problem while we are at home. I hope injecting the antibiotics into her bladder at night will help.
I also googled it and saw that some people inject a saline mixed with a liquid neosporin into their bladder at night. This sounds promising. You don't run the risk of antibiotic resistance, but it still kills the bad bacteria in the bladder. I will have to talk to Dr. Murphy about it.
She did not sleep well last night...she was not unhappy or anything, just awake alot.
She had a good day today. She got a bed bath and was happy and awake.
They really don't want her going 12 hours without cathing...but I really don't want to wake her up. So far they are doing it my way. I know that it is not ideal. I am thinking of saying if she wakes up on her own, then you can cath her. That seems fine while we are in the hospital...but does not solve the problem while we are at home. I hope injecting the antibiotics into her bladder at night will help.
I also googled it and saw that some people inject a saline mixed with a liquid neosporin into their bladder at night. This sounds promising. You don't run the risk of antibiotic resistance, but it still kills the bad bacteria in the bladder. I will have to talk to Dr. Murphy about it.
Friday, July 19, 2013
CT
I was not here when neurosurgery came by with the results of the CT.
This is what the nurse said...
One side (1 ventricle) is filling up more than the other. The ventricles are about 1/2 full (I don't know if that is the better or worse side).
Neurosurgery wants to continue raising her EVD (drain) 2 cm per day. They will do another CT on Monday.
I will need to talk to nuerosurgery about the results in more detail.
This is what the nurse said...
One side (1 ventricle) is filling up more than the other. The ventricles are about 1/2 full (I don't know if that is the better or worse side).
Neurosurgery wants to continue raising her EVD (drain) 2 cm per day. They will do another CT on Monday.
I will need to talk to nuerosurgery about the results in more detail.
Ellie is not a 60 year old man
The urology resident (I still haven't seen a Dr.) came by again this morning. She says yes, they want us to cath her 5-6 times per day and they want the longest amount of time (even during the night) that she goes without cathing to be 4-6 hours.
I said that is unreasonable. That means I have to get up every 4-6 hours to cath her. Plus it wakes Ellie up and she gets her days and night mixed up easily anyway. I said that I go all night without going to the bathroom and most people do.
The resident said a lot of her patients at the VA hospital do get up every 4-6 hours to go to the bathroom.
I said "She is not a 60 year old man".
She said she has people set alarms to get up and cath themselves through the night.
I said that's not going to happen.
She gave me a lecture on how I was increasing her risk of infection, blah, blah and basically saying I was a bad Mom for not being willing to do this (no, she did not say this verbally).
No, I am NOT A BAD MOM! I am a really really good Mom that is doing the best she can and it is too bad that this resident can't see this. I am just realistic and trying to be honest with you. I have to do what is best for Ellie and for myself. If I don't take of myself then I am doing a disservice to Ellie and the rest of my family.
So she said that maybe we could leave a cathedar in draining all night and this might be a compromise they would be willing to make. But it is really increasing the risk of infection.
I talked with Dr. Murphy about all of this when she came by and she said that we did not want to leave a cathedar in all night, it really really raises your risk of infection. I talked with her about doing a bladder wash, or injecting an antibiotic into the bladder overnight. She said she would write for it. I said I will just let urology make their recommendations during this hospital stay and then I would call her to have her write for it.
Her arms are getting tighter so will be restarting botox injections. And she (Dr. Murphy) wants us to get new arm splints.
We are headed down to the next CT at 11:00.
We will do another CT next Monday.
Hospitals...can't live with 'em...can't live without 'em (literally in our case)
Mom (and probably Ellie) are sick of being in the hospital. I know it hasn't even been a week...but it is just so boring...and it feels like everything is out of my control. I think I am going to leave for a few hours today because yesterday I broke down ad had a cry-fest with the nurse.
She did OK sleeping last night, I think she dropped her oxygen once. We tried a new mask because she is getting a red spot from the old one. But it was leaking like crazy and was terrible, so she only wore the other one for a few hours then I switched her back to her regular one. They want to put padding (like moleskin) on the red spot before we put the mask on...it just doesn't help with Ellie.
This morning we are going to do a bath, CT scan, and Dr. Murphy is going to come to lower her baclofen pump again (to see if this helps her pee on her own).
Urology says that the UTI is caused by the urine sitting in the bladder and growing yucky stuff, that's why they want us to cath her more often. I asked about a nightly bladder wash or injecting an antibiotic into her bladder nightly to kill the yucky stuff. They said there is no research supporting this and it is only used when every other avenue has been tried. To me...it sounds like it accomplishes the same thing if not better...Get rid of the the yucky stuff sitting there. I may just have to go a different route than urology and talk to Dr. Murphy about it. I know Dr. Murphy oversees this process for one of our friends.
I do not know how we can accomplish cathing 5-6 times per day once school starts, unless there is a nurse in the school. I'm trying not to worry about this right now, because I'm hoping that lowering the baclofen pump can get her going on her own again.
Then we just have to worry about her muscle tone getting tighter (with the lower baclofen pump dose).
I really don't even know how we can accomplish cathing 5-6 times per day at home. She is only awake from 7 AM-7 PM. And they really don't want her going 12 hours without being cathed (during the night). (They want us to cath her in the night also...but I don't think I'm willing to at this point...maybe that will be after the next UTI). She gets a sleeping pill to go to sleep and if we cath her after she is asleep it will probably wake her up and then how do we get her to go back to sleep...we have already used up the sleeping pill for the night. So if we try to fit 5 cathings into 12 hours that is 7, 10, 1, 4, 7 (Every 3 hours). It just seems like a lot to ask. I will do it of course, but I'm just trying to adjust to this new schedule. If we had to fit 6 times in...I guess we could do it 7, 9:30, 12, 2:30, 5, 7:30 (Every 2.5 hours). It would bump her bedtime just a bit.
They want her output to be between 300 and 500 mL each time.
Thursday, July 18, 2013
Increase
They want us to increase her cathing from 3-4 times per day to 5-6 times per day.
I will do it, but I'm grumbling inside.
Ellie did well today.
Another CT scan tomorrow (Fri).
I will do it, but I'm grumbling inside.
Ellie did well today.
Another CT scan tomorrow (Fri).
Urology came by
The urology resident came by.
I asked my questions.
She said she had to go back and talk with the urologist.
She said she would be back later today.
She did say the septra she has been taking since the last UTI would not have prevented the last UTI she had or this one she has now. I am baffled why they would prescribe this. When she finishes up the antibiotics that is killing the current UTI they will put her on a different antibiotic to try and prevent a future UTI.
The resident didn't see any value in doing an ultrasound to see if the UTI got to her kidneys, she said her white blood count wasn't high enough to indicate that it had reached her kidneys.
I am hoping that the actual urologist comes by later today.
I asked my questions.
She said she had to go back and talk with the urologist.
She said she would be back later today.
She did say the septra she has been taking since the last UTI would not have prevented the last UTI she had or this one she has now. I am baffled why they would prescribe this. When she finishes up the antibiotics that is killing the current UTI they will put her on a different antibiotic to try and prevent a future UTI.
The resident didn't see any value in doing an ultrasound to see if the UTI got to her kidneys, she said her white blood count wasn't high enough to indicate that it had reached her kidneys.
I am hoping that the actual urologist comes by later today.
So mad
Urology didn't come by yesterday. So I thought I was mad at them. But I have redirected my frustration towards neurosurgery.
Come to find out this morning...Neurosurgery has not written orders for a consult. The orders should have been written on Tues. But no...none were ever written!
Neurosurgery is driving me batty.
I am sure they are great at what they do...in the OR. But they are not my favorite to have in charge during a hospital stay.
It would just be nice #1) if they would listen...If I want a urology consult...don't pretend like they're the urology expert and act like that is an unreasonable request #2) if they would pretend like they care...don't walk in the room and say "how is she doing"...I say "fine"...and then walk out of the room ...spend 30 seconds with your patient #3) call her Ellie, not Eleanor...so it at least appears like you know your patient #4) Do what you say you are going to do...like writing orders for a urology consult #5) follow-up...if urology didn't come by...follow up and see why
She slept a lot of the night
She slept a lot of the night, but was awake a few times.
I made a new consolidated schedule with the nurse because they were coming in WAAAAYYYYY too much during the night. For example they were changing her feeding pump bag at midnight every night. And it wasn't even in conjuction with doing her vitals or anything. Come on people. Sleep is important to healing and to sanity.
A few years ago there was an article in Readers Digest (Yes, I am that old) of a Father spending the night in the hospital with his son. The Father got sick of people coming in during the night so he put a dresser in front of the door to block people.....tempting, very tempting.
So they were only supposed to come in at 10 and 2, but they still came in more than that. I am going to have to get firm tonight.
She is awake and doing well this morning. The enlarging of her ventricles does not seem to be affecting her negatively. If anything she feels better, she was smiling yesterday.
They raised her EVD another 2 CM this morning and they will do another CT scan tomorrow (Fri) morning.
I made a new consolidated schedule with the nurse because they were coming in WAAAAYYYYY too much during the night. For example they were changing her feeding pump bag at midnight every night. And it wasn't even in conjuction with doing her vitals or anything. Come on people. Sleep is important to healing and to sanity.
A few years ago there was an article in Readers Digest (Yes, I am that old) of a Father spending the night in the hospital with his son. The Father got sick of people coming in during the night so he put a dresser in front of the door to block people.....tempting, very tempting.
So they were only supposed to come in at 10 and 2, but they still came in more than that. I am going to have to get firm tonight.
She is awake and doing well this morning. The enlarging of her ventricles does not seem to be affecting her negatively. If anything she feels better, she was smiling yesterday.
They raised her EVD another 2 CM this morning and they will do another CT scan tomorrow (Fri) morning.
Wednesday, July 17, 2013
How to cover up a shaved head
We experimented with covering up her shaved spot...You can still see the betadine, but other than that it turned out!
Improvement
CT scans show improvement. The ventricles are starting to fill up with fluid and the brain is starting to move back into place. The neurosurgery nurse practitioner said the ventricles are almost half full. Wow, that is fast (in my opinion). She is doing really well. Yea!
Mixed up
YESTERDAY
Yesterday morning they raised the EVD (DRAIN) 2 cm instead of 1cm. Then in the afternoon she was sleepy, needing oxygen and then we even had to put her bi-pap mask on for a few hours. I was worried. I supposed it could have been the UTI...but I didn't remember last time her getting sleepy with the UTI. So then I got worried that it was the fluid in her brain. So I asked them to call her neurosurgery Dr. The resident came by. I told him my concerns and asked if we could go back to 1 cm instead of 2. He said yes. So we did. She also started having upper airway (which means nose/back of throat...not lungs) congestion. We needed to suction her several times. Respiratory therapy said her lungs sound good however, so that is the good news. But has she caught a bug here in the hospital? Will it get worse with her laying on her back for several weeks?
LAST NIGHT
She was awake ALL night. Talking, happy, trying to get Mom to play with her.
THIS MORNING
I am no longer concerned about her sleepiness last night. She just has her days and nights mixed up here in the hospital. It is common in the hospital, plus it is common for people who have deafness and blindness. If you are not getting visual and auditory clues from the outside world, it is hard to tell your days from your nights. As a side note...she can see and hear, she just has severe loss in both areas.
PLAN FOR TODAY
Try to keep her awake to get her back on schedule. Which will be difficult because we can't get her out of bed. She needs to stay horizontal so that the drain works properly.
They will do a CT scan today to see how her ventricles are looking.
I asked about doing a nasal swab and blood-work for the nasal congestion. The neurosurgery resident said we could do a nasal swab, but we know that the blood-work will be off because she has a UTI so he didn't see a point in doing that. OK, that's valid, and I hadn't thought of it.
I double checked that they were going to consult with urology. They said yes. I would think that urology would want to do blood-work to look at her kidneys and an ultrasound of her kidneys. I am also worried that the UTI antibiotic they started her on is an oral (g-tube) med and not an IV med. So I really want to talk with them. I left them a message yesterday and I'm sure they will call or stop by, but I am getting anxious. I don't want the UTI to get into her kidneys if it hasn't already.
OVERALL
Overall I think that she is doing well. I have seen her smile a few times today. I really hope that the CT shows some positive progress.
One thing I forgot to share from yesterday is that Dr. Walker (the neurosurgeon following her this week) said that once they get the brain back into position he has never seen it collapse/pull away from the skull again. That it sticks there. He said he supposes it could happen, but he has never seen it.
Yesterday morning they raised the EVD (DRAIN) 2 cm instead of 1cm. Then in the afternoon she was sleepy, needing oxygen and then we even had to put her bi-pap mask on for a few hours. I was worried. I supposed it could have been the UTI...but I didn't remember last time her getting sleepy with the UTI. So then I got worried that it was the fluid in her brain. So I asked them to call her neurosurgery Dr. The resident came by. I told him my concerns and asked if we could go back to 1 cm instead of 2. He said yes. So we did. She also started having upper airway (which means nose/back of throat...not lungs) congestion. We needed to suction her several times. Respiratory therapy said her lungs sound good however, so that is the good news. But has she caught a bug here in the hospital? Will it get worse with her laying on her back for several weeks?
LAST NIGHT
She was awake ALL night. Talking, happy, trying to get Mom to play with her.
THIS MORNING
I am no longer concerned about her sleepiness last night. She just has her days and nights mixed up here in the hospital. It is common in the hospital, plus it is common for people who have deafness and blindness. If you are not getting visual and auditory clues from the outside world, it is hard to tell your days from your nights. As a side note...she can see and hear, she just has severe loss in both areas.
PLAN FOR TODAY
Try to keep her awake to get her back on schedule. Which will be difficult because we can't get her out of bed. She needs to stay horizontal so that the drain works properly.
They will do a CT scan today to see how her ventricles are looking.
I asked about doing a nasal swab and blood-work for the nasal congestion. The neurosurgery resident said we could do a nasal swab, but we know that the blood-work will be off because she has a UTI so he didn't see a point in doing that. OK, that's valid, and I hadn't thought of it.
I double checked that they were going to consult with urology. They said yes. I would think that urology would want to do blood-work to look at her kidneys and an ultrasound of her kidneys. I am also worried that the UTI antibiotic they started her on is an oral (g-tube) med and not an IV med. So I really want to talk with them. I left them a message yesterday and I'm sure they will call or stop by, but I am getting anxious. I don't want the UTI to get into her kidneys if it hasn't already.
OVERALL
Overall I think that she is doing well. I have seen her smile a few times today. I really hope that the CT shows some positive progress.
One thing I forgot to share from yesterday is that Dr. Walker (the neurosurgeon following her this week) said that once they get the brain back into position he has never seen it collapse/pull away from the skull again. That it sticks there. He said he supposes it could happen, but he has never seen it.
Tuesday, July 16, 2013
Suprax
Nuerosurgery is going to start her on suprax (antibiotic) it is the same one she was on for her last UTI. I still want Urology to weigh in. To see if we need to look at her kidneys or do a different plan. I don't really feel comfortable having neurosurgery making decisions about urology issues. I'm sure Urology will call or stop by.
Really?!?!?
So yes, it looks like Ellie has another UTI. I have only seen the results that the nurse pulled up. I have not spoken to nuerosurgery (the Dr.'s following her right now) about it yet. I did place a call to her urologist.
I am so frustrated by this. I have been extra extra careful about being really clean while cathing her, plus she is on a low dose antibiotic (Septra) to prevent a recurring UTI. We are back to Mom blaming herself...typical Mom of a child with disabilities. I guess that's the good news...I'm a normal Mom right?
I feel overwhelmed by this right now. Doesn't she have enough going on?
Today she has also needed oxygen while awake. This is not normal for her. I am disheartened by this. Maybe they are going up too fast on the EVD (External Ventricular Drain)
I spoke with Dr. Walker and asked him some questions this morning...
Can hydrocephalus get worse with puberty?
No. Hydrocephalus can cause early puberty, but hydrocephalus does not change with puberty.
Could the CSF (Cerebral Spinal Fluid) have gotten infected when her spine surgery got infected and do we need to check her CSF now?
It could have, but it didn't. If the CSF got infected it would have gotten to the baclofen pump and she would be REALLY REALLY sick. There is no need to check it .
Can we send a urine sample due to decreased urine output over the last 3 days?
Yes...at this point in the day we have sent the sample and gotten the results back for the UA (Urinalysis). The results for the culture will not be back for 24-48 hours. The UA showed increased white blood cells, red blood cells and bacteria.
How much success have you seen with this procedure (raising an EVD to fill the ventricles back up with fluid and push the brain back in to position)?
He is optomistic. They have done it before. Just not on this severe of a case. Dr. Brockmeyer had said that it might take a week or two. Dr Walker said it might take several weeks. "Several weeks" sounds longer than a "week or two."
END OF QUESTIONS
Dr Brockmeyer had told his residents that he wanted to do a repeat CT scan on Thurs or Fri. Dr. Walker wants to do one Wed and Fri. I like that better. Dr. Brockmeyer had shown me the CT scans but either he didn't explain it well, or I was in shock and didn't absorb the information well. Because Dr. Walker showed me again today and I was in shock again. I will try to draw another picture because I don't think I drew it accurately last time.
Dr. Brockmeyers plan was to raise the EVD 1 cm per day. Dr. Walker wants to do 2 CM per day.
So today we raised the EVD 2 cm and she is draining a lot more than she did yesterday. This is kind of opposite than what should happen. As you raise the EVD it should be harder to drain and should drain less. The Nuerosurgery Nurse Practicioner thinks as we raise it higher it will start to drain less.
Dr. Walker confirmed that the shunt malfunctioned. The shunt severely overdrained. The shunt will need to be replaced.
Also, I was wondering when the CT scans were and they were on 5/4/12. So a year and 2.5 months-ish.
I was looking over her blog and it looks like I started feeling like something was "off" starting in about April or May. So I am assuming that is when the overdrainage started happening. If it happened before that it could have affected other changes that we have made over the last year and 2 months. Such as raising seizure meds, etc... And maybe some of the changes we made didn't really need to be made.
First we have to make it through this over-drainage issue and surrounding surgeries. Then we can look at what changes have been made and did they really need to be made.
Hard day for Mom. But Ellie is doing OK.
I am so frustrated by this. I have been extra extra careful about being really clean while cathing her, plus she is on a low dose antibiotic (Septra) to prevent a recurring UTI. We are back to Mom blaming herself...typical Mom of a child with disabilities. I guess that's the good news...I'm a normal Mom right?
I feel overwhelmed by this right now. Doesn't she have enough going on?
Today she has also needed oxygen while awake. This is not normal for her. I am disheartened by this. Maybe they are going up too fast on the EVD (External Ventricular Drain)
I spoke with Dr. Walker and asked him some questions this morning...
Can hydrocephalus get worse with puberty?
No. Hydrocephalus can cause early puberty, but hydrocephalus does not change with puberty.
Could the CSF (Cerebral Spinal Fluid) have gotten infected when her spine surgery got infected and do we need to check her CSF now?
It could have, but it didn't. If the CSF got infected it would have gotten to the baclofen pump and she would be REALLY REALLY sick. There is no need to check it .
Can we send a urine sample due to decreased urine output over the last 3 days?
Yes...at this point in the day we have sent the sample and gotten the results back for the UA (Urinalysis). The results for the culture will not be back for 24-48 hours. The UA showed increased white blood cells, red blood cells and bacteria.
How much success have you seen with this procedure (raising an EVD to fill the ventricles back up with fluid and push the brain back in to position)?
He is optomistic. They have done it before. Just not on this severe of a case. Dr. Brockmeyer had said that it might take a week or two. Dr Walker said it might take several weeks. "Several weeks" sounds longer than a "week or two."
END OF QUESTIONS
Dr Brockmeyer had told his residents that he wanted to do a repeat CT scan on Thurs or Fri. Dr. Walker wants to do one Wed and Fri. I like that better. Dr. Brockmeyer had shown me the CT scans but either he didn't explain it well, or I was in shock and didn't absorb the information well. Because Dr. Walker showed me again today and I was in shock again. I will try to draw another picture because I don't think I drew it accurately last time.
Dr. Brockmeyers plan was to raise the EVD 1 cm per day. Dr. Walker wants to do 2 CM per day.
So today we raised the EVD 2 cm and she is draining a lot more than she did yesterday. This is kind of opposite than what should happen. As you raise the EVD it should be harder to drain and should drain less. The Nuerosurgery Nurse Practicioner thinks as we raise it higher it will start to drain less.
Dr. Walker confirmed that the shunt malfunctioned. The shunt severely overdrained. The shunt will need to be replaced.
Also, I was wondering when the CT scans were and they were on 5/4/12. So a year and 2.5 months-ish.
I was looking over her blog and it looks like I started feeling like something was "off" starting in about April or May. So I am assuming that is when the overdrainage started happening. If it happened before that it could have affected other changes that we have made over the last year and 2 months. Such as raising seizure meds, etc... And maybe some of the changes we made didn't really need to be made.
First we have to make it through this over-drainage issue and surrounding surgeries. Then we can look at what changes have been made and did they really need to be made.
Hard day for Mom. But Ellie is doing OK.
Advice
Found this on facebook...I love it...Perfect advice...just change down syndrome to "Child with disabilities"
10 things to say when a baby is born with down syndrome.
A few weeks ago I posted 10 things not to say to a parent of a child with Down syndrome.
Someone emailed me a day or two later.
“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say? … Please, help us. We really want to know.”
I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.
10. How are you doing?
After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”
9. He/she has your eyes/nose/hair etc…
One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.
At first, I just wanted to know that although she had Down syndrome, she was my baby.
8. How’s her health?
Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.
7. You are going to be a great parent.
I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.
6. We brought the baby a present.
Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.
Hear me, you guys. If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal.
In other words, celebrate new life.
5. I am bringing you a meal Tuesday at six o’clock.
Offer practical help. And don’t say, “what can I do?” or “let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.
4. Can I hold him/her?
Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.
3. We’d like to take the other kids out to a movie Saturday and then have them over for pizza.
Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where, and for how long.
Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.
2. You make beautiful children.
I always say this to a new parent and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they aren’t sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.
1. Congratulations on the birth of your baby!
I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life that with God’s help, I produced.
Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention, and excitement that comes with new life.
10 things to say when a baby is born with down syndrome.
A few weeks ago I posted 10 things not to say to a parent of a child with Down syndrome.
Someone emailed me a day or two later.
“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say? … Please, help us. We really want to know.”
I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.
10. How are you doing?
After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”
9. He/she has your eyes/nose/hair etc…
One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.
At first, I just wanted to know that although she had Down syndrome, she was my baby.
8. How’s her health?
Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.
7. You are going to be a great parent.
I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.
6. We brought the baby a present.
Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.
Hear me, you guys. If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal.
In other words, celebrate new life.
5. I am bringing you a meal Tuesday at six o’clock.
Offer practical help. And don’t say, “what can I do?” or “let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.
4. Can I hold him/her?
Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.
3. We’d like to take the other kids out to a movie Saturday and then have them over for pizza.
Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where, and for how long.
Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.
2. You make beautiful children.
I always say this to a new parent and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they aren’t sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.
1. Congratulations on the birth of your baby!
I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life that with God’s help, I produced.
Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention, and excitement that comes with new life.
Questions
It took her about 5 hours to wake up from anesthesia yesterday. Then she was in a little bit of pain but not too bad. Here is a pic of her awake last night
She slept well through the night besides a few drops in oxygen. At home I have the oxygen at 5 liters (at night only) because that is as high as my machine goes and I am not willing to get up during the night and adjust it to her lowest (most optimal) setting. So they thought they would try it lower (1 liter) last night and it obviously wasn't enough.
They raised the EVD (External Ventricular Drain) (The bag that the fluid from her brain is draining into) 1 cm. They plan on raising it 1 cm per day.
I want them to send a urine culture, I have not been getting as much urine out when I cath her for 2 or 3 days now. I will talk to them when they round.
Here are the questions I asked the neurosurgery residents yesterday...
Where is CSF (Cerebral Spinal Fluid) (The fluid in your spine and brain) created? Brain? Spine? Both? the answer is brain
Can your body stop making CSF?
No
When are we going to repeat CT scans?
Thurs or Fri
How much raise the EVD?
1 cm/day
Not draining much CSF yet, are you worried?
No
Can we do her vibrating vest with the EVD?
yes
Have we sent a sample of the CSF?
no, it looked pristine, there is no reason to send it
Is the tubing coming out of the belly the exact tubing coming down from her brain, or is there a connector in her belly?
Same tubing
There was a little stuff leaking out of wound in belly (where tubing is coming out), could that be CSF?
No, we had to cut through fat and fat is juicy
END OF QUESTIONS
Sometimes I hate that this is a teaching hospital. OK...a lot of times I hate that this is a teaching hospital (It means you have medical students here helping/working/learning how to be a Dr.). I understand Dr.'s have to get their experience somewhere I just wish it wasn't on us. For example, Ellie's surgeon is out of town this week and so she is being followed by a different neurosurgeon, but neither surgeon stopped by to see how she was doing last night...they sent their residents. If the Dr. following her doesn't stop by today, I will have to get proactive.
She slept well through the night besides a few drops in oxygen. At home I have the oxygen at 5 liters (at night only) because that is as high as my machine goes and I am not willing to get up during the night and adjust it to her lowest (most optimal) setting. So they thought they would try it lower (1 liter) last night and it obviously wasn't enough.
They raised the EVD (External Ventricular Drain) (The bag that the fluid from her brain is draining into) 1 cm. They plan on raising it 1 cm per day.
I want them to send a urine culture, I have not been getting as much urine out when I cath her for 2 or 3 days now. I will talk to them when they round.
Here are the questions I asked the neurosurgery residents yesterday...
Where is CSF (Cerebral Spinal Fluid) (The fluid in your spine and brain) created? Brain? Spine? Both? the answer is brain
Can your body stop making CSF?
No
When are we going to repeat CT scans?
Thurs or Fri
How much raise the EVD?
1 cm/day
Not draining much CSF yet, are you worried?
No
Can we do her vibrating vest with the EVD?
yes
Have we sent a sample of the CSF?
no, it looked pristine, there is no reason to send it
Is the tubing coming out of the belly the exact tubing coming down from her brain, or is there a connector in her belly?
Same tubing
There was a little stuff leaking out of wound in belly (where tubing is coming out), could that be CSF?
No, we had to cut through fat and fat is juicy
END OF QUESTIONS
Sometimes I hate that this is a teaching hospital. OK...a lot of times I hate that this is a teaching hospital (It means you have medical students here helping/working/learning how to be a Dr.). I understand Dr.'s have to get their experience somewhere I just wish it wasn't on us. For example, Ellie's surgeon is out of town this week and so she is being followed by a different neurosurgeon, but neither surgeon stopped by to see how she was doing last night...they sent their residents. If the Dr. following her doesn't stop by today, I will have to get proactive.
Monday, July 15, 2013
In a room...still sleeping
She is very sleepy...I have seen her wake up and move for about 3 seconds...literally.
They shaved part of her head (I wasn't expecting this). I guess they just prepped her in case they decided to pull the whole shunt out and have the tube come directly out of her head rather than her belly. I knew they would have to shave it next week or whenever they do the new shunt...I just wasn't expecting it today.
They shaved part of her head (I wasn't expecting this). I guess they just prepped her in case they decided to pull the whole shunt out and have the tube come directly out of her head rather than her belly. I knew they would have to shave it next week or whenever they do the new shunt...I just wasn't expecting it today.
This is where the tubing comes out of her belly.
The tubing goes into this device that measures how much fluid comes out. Right now they have the device level with her belly, and they will raise it several centimeters each day. This will make it harder for the fluid to drain out and hopefully it can build back up in her brain.
All of her vitals look good right now. She is breathing on her own and needing no oxygen. Her respirations (Breaths per minute ) are very slow and shallow, but she is still coming out of anesthesia. She is tired and doesn't seem to be in pain.
Surgery done
The surgeon was not sure he would get any fluid out when he pulled the tubing out of her tummy, but he got a few drops. So we'll have to wait and see if it helps over the next few days/week.
He said everything went fine. I haven't seen her yet. She always takes a REALLY long time to wake up after anesthesia.
He said everything went fine. I haven't seen her yet. She always takes a REALLY long time to wake up after anesthesia.
Delayed
There has been an emergency shunt operation (for someone else), so we have been bumped at least an hour. I'm guessing longer than an hour.
Our time was supposed to be 9:45...so we are looking at 11ish for a start time...maybe?!?!
Our time was supposed to be 9:45...so we are looking at 11ish for a start time...maybe?!?!
How to not be annoyed with hospital people
How to not be annoyed with hospital people...
Don't come to the hospital to have surgery when you are stressed...oh wait you're always stressed when you are going to have surgery (or your child).
Breathe in through the nose and out through the mouth.
Let go of any anxiety and contention you feel.
Focus on your happy place.
Starting at your toes relax every muscle in your body all the way up to your head.
OK...do you feel better now? I do to.
We have checked in and they have brought us back to examine her. We have spoken with Dr. Brockmeyer her neurosurgeon and are waiting to talk to the anesthesiologist.
A year or two ago PCMC started asking you to bathe your child the night before surgery and not put any lotion on to cut down on infections. This time they added have them sleep in clean PJ's and on clean linens. Then when we got here I had to wipe her down with these new antibacterial wipes and follow a certain cleansing routine. Wipe #1 Neck, Chest, Abdomen, Arms. Wipe #2 Back, Buttocks. Wipe #3 Legs. Wipe #4 groin (but not genitals). Sounds like a good idea I guess.
Here is a picture of the new wipes.
Jason gave Ellie a blessing last night. One of the things that jumped out at me was that she is supposed to have joy in this earth life. The Book of Mormon teaches that "man is that he might have joy" found here in verse 25. Ellie is just so mellow...she hardly ever cries or complains and hardly ever smiles. I guess I never thought about one of the purposes of Ellie being here is so that she can have joy/find joy/be joyful.
The way that I interpret that scripture is different from "eat, drink and be merry, for tomorrow we die" meaning do whatever you want that brings temporary happiness (found here in verse 7). The way that I have found true joy is through the everlasting gospel of Jesus Christ (The Church of Jesus Christ of Latter-Day Saints), eternal families, having the spirit in my life, receiving ongoing blessings and love from heaven. This brings lasting peace, comfort and hope.
I also got a blessing from Jason and the message I received was God will give me all of the tools to handle whatever comes my way. "God will not leave me comfortless" (found here in John 14:18). My favorite scripture is from the Book of Mormon. Lehi has followed the lords command and taken his family into the wilderness. The Lord then asks them to return and get some records of their people from the wicked King Laban. Lehi sends his sons back to get the records. several of his sons complain but there is one who does not, this is Nephi. Nephi says "I awill go and do the things which the Lord hath commanded, for I know that the Lord giveth no bcommandments unto the children of men, save he shall cprepare a way for them that they may accomplish the thing which he commandeth them." This scripture is found here in verse 7.
I believe this will all my heart. If I were asked to do the things I am asked to do I couldn't do it. But "with God all things are possible" (found here in Matthew 19:26).
If you have any questions about my faith or The Church of Jesus Christ of Latter-Day Saints, please ask me or visit http://mormon.org/
Don't come to the hospital to have surgery when you are stressed...oh wait you're always stressed when you are going to have surgery (or your child).
Breathe in through the nose and out through the mouth.
Let go of any anxiety and contention you feel.
Focus on your happy place.
Starting at your toes relax every muscle in your body all the way up to your head.
OK...do you feel better now? I do to.
We have checked in and they have brought us back to examine her. We have spoken with Dr. Brockmeyer her neurosurgeon and are waiting to talk to the anesthesiologist.
A year or two ago PCMC started asking you to bathe your child the night before surgery and not put any lotion on to cut down on infections. This time they added have them sleep in clean PJ's and on clean linens. Then when we got here I had to wipe her down with these new antibacterial wipes and follow a certain cleansing routine. Wipe #1 Neck, Chest, Abdomen, Arms. Wipe #2 Back, Buttocks. Wipe #3 Legs. Wipe #4 groin (but not genitals). Sounds like a good idea I guess.
Here is a picture of the new wipes.
Here are some pictures of her before her surgery
The way that I interpret that scripture is different from "eat, drink and be merry, for tomorrow we die" meaning do whatever you want that brings temporary happiness (found here in verse 7). The way that I have found true joy is through the everlasting gospel of Jesus Christ (The Church of Jesus Christ of Latter-Day Saints), eternal families, having the spirit in my life, receiving ongoing blessings and love from heaven. This brings lasting peace, comfort and hope.
I also got a blessing from Jason and the message I received was God will give me all of the tools to handle whatever comes my way. "God will not leave me comfortless" (found here in John 14:18). My favorite scripture is from the Book of Mormon. Lehi has followed the lords command and taken his family into the wilderness. The Lord then asks them to return and get some records of their people from the wicked King Laban. Lehi sends his sons back to get the records. several of his sons complain but there is one who does not, this is Nephi. Nephi says "I awill go and do the things which the Lord hath commanded, for I know that the Lord giveth no bcommandments unto the children of men, save he shall cprepare a way for them that they may accomplish the thing which he commandeth them." This scripture is found here in verse 7.
I believe this will all my heart. If I were asked to do the things I am asked to do I couldn't do it. But "with God all things are possible" (found here in Matthew 19:26).
If you have any questions about my faith or The Church of Jesus Christ of Latter-Day Saints, please ask me or visit http://mormon.org/
Saturday, July 13, 2013
Most of the time I forget how disabled Ellie is
These past few days have been really hard for me.
Ellie is doing fine and I think she will be fine through these next few weeks...that is not it.
But seeing the CT images of her brain and then explaining a typical brain to the blog readers and her normal brain and her brain now sounds TERRIBLE. But it doesn't change who she is and how I love her.
Her normal brain is the way she has always been...nothing has changed there. But sometimes I forget. I only see a beautiful, patient, loving, smart girl. I forget that other people see person with severe disabilities and feel sorry for her. I forget that people wonder what happened to her. I forget that people don't know how to act or what to say around her. I forget that she is scary to most people.
I forget that it is not normal to change your 11 year old's diapers, carry them everywhere, feed them though a tube in their stomach, worry about them pooping, monitor vital signs, get up several times a night because alarms are beeping, etc, etc, etc.
Every part of my interaction with her is different than it would be with another 11 year old.
It is not normal, but it is normal for me and Ellie. I normally don't see her disabilities at all, I truly don't, and I like it that way. At times like these I am reminded of her disabilities and I don't like it. I only want to see her positive characteristics, her talents and her beauty.
I have found myself distancing myself from her these last few days (without meaning too) because I think deep down I am afraid of losing her and don't know how I will be able to bear it.
It will be fine and I will get back to normal when I can forget that Ellie has disabilities I just need some time.
Ellie is doing fine and I think she will be fine through these next few weeks...that is not it.
But seeing the CT images of her brain and then explaining a typical brain to the blog readers and her normal brain and her brain now sounds TERRIBLE. But it doesn't change who she is and how I love her.
Her normal brain is the way she has always been...nothing has changed there. But sometimes I forget. I only see a beautiful, patient, loving, smart girl. I forget that other people see person with severe disabilities and feel sorry for her. I forget that people wonder what happened to her. I forget that people don't know how to act or what to say around her. I forget that she is scary to most people.
I forget that it is not normal to change your 11 year old's diapers, carry them everywhere, feed them though a tube in their stomach, worry about them pooping, monitor vital signs, get up several times a night because alarms are beeping, etc, etc, etc.
Every part of my interaction with her is different than it would be with another 11 year old.
It is not normal, but it is normal for me and Ellie. I normally don't see her disabilities at all, I truly don't, and I like it that way. At times like these I am reminded of her disabilities and I don't like it. I only want to see her positive characteristics, her talents and her beauty.
I have found myself distancing myself from her these last few days (without meaning too) because I think deep down I am afraid of losing her and don't know how I will be able to bear it.
It will be fine and I will get back to normal when I can forget that Ellie has disabilities I just need some time.
Friday, July 12, 2013
Collapsed Brain
So something has been "off" with Ellie for a few months now. She has had 2 hospitalizations and many many many tests trying to figure this out.
The things that were "off"...
When I sit her up she gets sleepy for a while, and then when I lay her down she gets sleepy for a while.
No peeing
No pooping
Increased heart-rate
Occasional grinding teeth
I thought maybe we should check her shunt. I mentioned it several times on both hospitalizations, but other reasons for her being "off" were always found...so her shunt was never looked at, although I did talk with nuerosurgery while inpatient they also reassured me that her symptoms were not shunt related.
I still felt like we needed to look at her shunt.
Maybe I need to explain...we all have fluid in our brain in areas called "ventricles". This fluid cushions our brain so when we bump our head we don't get knocked unconscious. A cross-section of your head would look something like this...
The things that were "off"...
When I sit her up she gets sleepy for a while, and then when I lay her down she gets sleepy for a while.
No peeing
No pooping
Increased heart-rate
Occasional grinding teeth
I thought maybe we should check her shunt. I mentioned it several times on both hospitalizations, but other reasons for her being "off" were always found...so her shunt was never looked at, although I did talk with nuerosurgery while inpatient they also reassured me that her symptoms were not shunt related.
I still felt like we needed to look at her shunt.
Maybe I need to explain...we all have fluid in our brain in areas called "ventricles". This fluid cushions our brain so when we bump our head we don't get knocked unconscious. A cross-section of your head would look something like this...
Ellie's brain has extra large ventricles with lots of fluid. This is called "hydrocephalus". She has very little brain matter, most of her head is fluid. She has had a surgery where they place a 1 way valve (called a shunt) into the fluid and then thread tubing under her skin and the extra fluid drains into her abdomen (not into her stomach...just the area around her stomach). This is what Ellie's brain normally looks like...
So yesterday we went for a head CT scan and a series of x-rays looking at the shunt and the shunt tubing. Like I said, something was "off" and This was something we hadn't looked at for a while. She had been stable for several years and the neurosurgeon felt like there was no need to keep doing 6 month or even 1 year follow-ups and just to come in if there were problems. So her last head CT and shunt series (x-rays) were over a year ago.
Her CT yesterday was DRASTICALLY different from the year before. The ventricles were completely collapsed. And since the ventricles normally hold the brain in place (out by the skull) her brain has now collapsed in also.
The Dr. said (twice) that this was the most drastic case he has ever seen...GREAT!
Her brain now looks something like this...
He left the room to consult with one of the other neurosurgeons to get a second opinion and they both felt like they should do something.
So next Monday they will be doing surgery. They will be removing the end of the shunt tubing from her abdomen and allowing the CSF (Cerebral Spinal Fluid) (the fluid from her brain) to drain into a bag outside of her body. They will raise the bag a few centimeters per day (higher off the ground). This will help the fluid to drain more slowly from her brain and hopefully allow the ventricles to reinflate with fluid and her brain to be pushed back where it used to be.
They are not sure this will work, but feel like they should try.
The good news is she has not shown extreme symptoms such as extreme lethargy, vomiting, seizures, etc..
Once I found out what her scans looked like...I realized why she has been grinding her teeth. It normally means ear infection, but now I am assuming she was saying my head is killing me. (This was one of the things that has been "off" with her---grinding her teeth. And yes I thought it could possible be shunt related, which is why I brought her in. But now I KNOW that this is why she has been grinding her teeth.)
You have to know surgeons...THEY ARE COCKY and they think they know EVERYTHING.
I asked if this could have to do with her not peeing and not pooping...he emphatically said NO.
I asked if the "Free Air" in her abdomen could have been from this...he emphatically said NO.
I asked if her spinal surgery from last August could have caused this...he emphatically said NO.
But here's where you have to take what the surgeon says and say to yourself "they don't know everything". I REALLY hope this is related to the no peeing and no pooping. That would be AWESOME.
They don't know if they will be able to get her brain back where it was a year ago, but they are going to try and improve it.
Surgery will be Monday and she will be inpatient for at least that week. Then depending on how things go she would have another surgery the next Monday where they would be placing a new higher pressure shunt. It sounds opposite, but a higher pressure shunt drains less fluid. (It takes a higher pressure in the brain for any fluid to drain).
The Dr. said this is a case of extreme over-drainage. He does not know why this happened.
This is bad and scary and I am nervous.
I suppose that I am comforted by the fact that yes, symptomatically she is doing well. But her brain has collapsed for heavens sake. How can you even survive that? It just shows you how resilient the brain and the human body are...it is amazing creation from God.
We would appreciate your fasting and prayers over the next few weeks that the Dr.'s may be inspired to help Ellie in the best way possible if it be God's will, that God's will may be done, and comfort for Ellie and our family.
Thursday, July 11, 2013
Lots of changes
Saw 2 Dr.'s yesterday and 1 we will see one more later today.
We have a new bowel plan. We really really hope it works because the milk of magnesia DID NOT!
We upped her calories a bit, she has been losing a bit of weight over the last year. Right now she gets 1 C. of the powdered formula for the whole day (it is mixed with water of course). The dietician wanted to up it to 1 1/2 C. per day. That seems like a LOT more. I talked her in to 1 1/4 C. But she wants to see her back in 3 months instead of our normal 6 or 12 months). I am scared of her gaining too much weight because one time when she was a baby a Primary Children's Dietician figured out her calories but forgot to take into account her activity level (extrememly low) and we started feeding her and she was gaining a pound a week and became literally REALLY FAT. Also...every pound she gains I have to lift every day...multiple times per day. So I REALLY don't want her to gain more weight...Ever!
45 pounds is the ideal maximum weight of a child with severe disabilities in my opinion. You can can still lift them with no problem to chair, bed, floor, couch, bath. Beyond that IT GETS HARD! Ellie weighs 63 pounds.
We are changing her calcium because her current calcium also had vitamin D...and her vitamin D levels were high. So now we have to find a powder or liquid calcium with no vitamin D and no magnesium...I am anticipating this will be hard. They add the magnesium to help with absorption and Vitamin D because...I don't know...??
She normally gets some salt added to her formula to help with electrolytes...we will be switching back to something called "Lite Salt" because lite salt is potassium chloride instead of sodium chloride (like regular salt). This is due to her potassium being low. We did the Lite Salt a few years ago...but her potassium got high so we switched to regular salt.
I know this is all boring, boring, boring...but isn't that mostly what life is???
Today we go get blood work done (ordered by the dietician yesterday), a CT scan (for shunt) and shunt series (x-rays). And then meet with the neurosurgeon. I just want her shunt checked out. She has been getting sleepy when I sit her up and then sleepy when I lay her down. Several years ago when she was doing this same thing the neurosurgeon was sure this was a sign of the shunt malfunctioning so she had surgery to redo it. It didn't really help. And the surgeon afterwards thought it probably didn't need to be done (except that the tubing was cracking in her neck...so that was good it got replaced). The neurosurgery nurse does not think that this sounds like a shunt problem, but I really want to get it checked out non-the-less.
We have a new bowel plan. We really really hope it works because the milk of magnesia DID NOT!
We upped her calories a bit, she has been losing a bit of weight over the last year. Right now she gets 1 C. of the powdered formula for the whole day (it is mixed with water of course). The dietician wanted to up it to 1 1/2 C. per day. That seems like a LOT more. I talked her in to 1 1/4 C. But she wants to see her back in 3 months instead of our normal 6 or 12 months). I am scared of her gaining too much weight because one time when she was a baby a Primary Children's Dietician figured out her calories but forgot to take into account her activity level (extrememly low) and we started feeding her and she was gaining a pound a week and became literally REALLY FAT. Also...every pound she gains I have to lift every day...multiple times per day. So I REALLY don't want her to gain more weight...Ever!
45 pounds is the ideal maximum weight of a child with severe disabilities in my opinion. You can can still lift them with no problem to chair, bed, floor, couch, bath. Beyond that IT GETS HARD! Ellie weighs 63 pounds.
We are changing her calcium because her current calcium also had vitamin D...and her vitamin D levels were high. So now we have to find a powder or liquid calcium with no vitamin D and no magnesium...I am anticipating this will be hard. They add the magnesium to help with absorption and Vitamin D because...I don't know...??
She normally gets some salt added to her formula to help with electrolytes...we will be switching back to something called "Lite Salt" because lite salt is potassium chloride instead of sodium chloride (like regular salt). This is due to her potassium being low. We did the Lite Salt a few years ago...but her potassium got high so we switched to regular salt.
I know this is all boring, boring, boring...but isn't that mostly what life is???
Today we go get blood work done (ordered by the dietician yesterday), a CT scan (for shunt) and shunt series (x-rays). And then meet with the neurosurgeon. I just want her shunt checked out. She has been getting sleepy when I sit her up and then sleepy when I lay her down. Several years ago when she was doing this same thing the neurosurgeon was sure this was a sign of the shunt malfunctioning so she had surgery to redo it. It didn't really help. And the surgeon afterwards thought it probably didn't need to be done (except that the tubing was cracking in her neck...so that was good it got replaced). The neurosurgery nurse does not think that this sounds like a shunt problem, but I really want to get it checked out non-the-less.
Monday, July 8, 2013
I might have figured something out---partially
Since coming home after the UTI she has not been urinating AT ALL on her own...She has probably had 3 wet diapers in 3 or 4 weeks. Everything else I have had to cath.
During that hospitalization we changed her "pooping" medicine from lactulose to milk of magnesia. It has been terrible. We have been doing the maximum daily dose of milk of magnesia and it does NOTHING.
The other day (it had been several days with no bowel movement) I took it up a notch and did an enema and a full dose of miralax in addition to her milk of magnesia, and daily supposity. She had results and wah-lah...her heart-rate came down and no grinding teeth.
But then the next day she had very little urine output...I think because enemas (and other stool softeners/stimulants) draw the water into the bowels to help you go.
And when she is super constipated she doesn't urinate either, which always makes me think that she has a UTI. And then I freak because I don't want it to go to her kidneys and damage them.
So it's like this...
pooping regularly= peeing OK (with a cath)
constipated= decreased pee
do bowel cleanout= decreased pee
So we REALLY need to figure out a new bowel plan. The lactulose (that she was on before for several years) worked really well but they think that might have been contributing to the free air in her abdomen. She has an appt with gastroenterology on Wed, so we will come up with an updated plan then.
A week or 2 ago she had a uro-dynamic study. It was in a procedure room just off of the operating rooms at PCMC. I got to stay, but had to change into a hairnet and jumpsuit (that was a first for me!). They emptied her bladder then filled her bladder with "contrast" and did a series of x-rays as her bladder filled to see how it reacted.
I will tell you haw a normal bladder should respond, then how hers responded.
When your bladder is full then the bladder spasms. This causes the urinary sphincter to spasms and that is how you know you need to go to the bathroom. Then you relax the sphincter and you pee.
These were their findings...She has a large bladder, but it is a safe bladder, it does not reflux back into the kidneys. When her bladder is full it spasms (like normal), the sphincter spasms (like normal) but she cannot relax it to go pee. So she feels like she has to go to the bathroom, but cannot. They called it an "uncoordinated sphincter". They do not have a reason for this to be happening. It could be nerve damage either from the spinal surgery or ?????? They really didn't have any guesses for me.
As of now they suggested cathing her 3 or 4 times a day (up from 2) in the hopes that sometimes if you can get the bladder smaller it will start working better. And they put her on a low dose oral antibiotic for 6 months. Because they said 2/3 of people that get a UTI have a second UTI within 6 months.
I have decided to go down on her baclofen pump dose because all of her urinary problems started around the time of her spinal surgery. But at this same time we went up on her baclofen pump dose and have gone up several times since then.
Baclofen must be weened, so we will have to lower it through several steps. The first lowering will be this Wed. Unfortunately it must be done at PCMC and not just at home.
Her baclofen pump is an implanted device in her abdomen that delivers a medicine called baclofen directly into her spinal fluid to help her relax her tight muscles.
I don't want her muscles to be tight, but I need to know if this is the cause of her problems, it can be a side effect of the baclofen.
So far we have been able to cath her, but if it comes to a point that we are unable to, then they surgically make a hole above the urinary sphincter (in her stomach) and you cath through that hole instead of through the regular spot.
During that hospitalization we changed her "pooping" medicine from lactulose to milk of magnesia. It has been terrible. We have been doing the maximum daily dose of milk of magnesia and it does NOTHING.
The other day (it had been several days with no bowel movement) I took it up a notch and did an enema and a full dose of miralax in addition to her milk of magnesia, and daily supposity. She had results and wah-lah...her heart-rate came down and no grinding teeth.
But then the next day she had very little urine output...I think because enemas (and other stool softeners/stimulants) draw the water into the bowels to help you go.
And when she is super constipated she doesn't urinate either, which always makes me think that she has a UTI. And then I freak because I don't want it to go to her kidneys and damage them.
So it's like this...
pooping regularly= peeing OK (with a cath)
constipated= decreased pee
do bowel cleanout= decreased pee
So we REALLY need to figure out a new bowel plan. The lactulose (that she was on before for several years) worked really well but they think that might have been contributing to the free air in her abdomen. She has an appt with gastroenterology on Wed, so we will come up with an updated plan then.
A week or 2 ago she had a uro-dynamic study. It was in a procedure room just off of the operating rooms at PCMC. I got to stay, but had to change into a hairnet and jumpsuit (that was a first for me!). They emptied her bladder then filled her bladder with "contrast" and did a series of x-rays as her bladder filled to see how it reacted.
I will tell you haw a normal bladder should respond, then how hers responded.
When your bladder is full then the bladder spasms. This causes the urinary sphincter to spasms and that is how you know you need to go to the bathroom. Then you relax the sphincter and you pee.
These were their findings...She has a large bladder, but it is a safe bladder, it does not reflux back into the kidneys. When her bladder is full it spasms (like normal), the sphincter spasms (like normal) but she cannot relax it to go pee. So she feels like she has to go to the bathroom, but cannot. They called it an "uncoordinated sphincter". They do not have a reason for this to be happening. It could be nerve damage either from the spinal surgery or ?????? They really didn't have any guesses for me.
As of now they suggested cathing her 3 or 4 times a day (up from 2) in the hopes that sometimes if you can get the bladder smaller it will start working better. And they put her on a low dose oral antibiotic for 6 months. Because they said 2/3 of people that get a UTI have a second UTI within 6 months.
I have decided to go down on her baclofen pump dose because all of her urinary problems started around the time of her spinal surgery. But at this same time we went up on her baclofen pump dose and have gone up several times since then.
Baclofen must be weened, so we will have to lower it through several steps. The first lowering will be this Wed. Unfortunately it must be done at PCMC and not just at home.
Her baclofen pump is an implanted device in her abdomen that delivers a medicine called baclofen directly into her spinal fluid to help her relax her tight muscles.
I don't want her muscles to be tight, but I need to know if this is the cause of her problems, it can be a side effect of the baclofen.
So far we have been able to cath her, but if it comes to a point that we are unable to, then they surgically make a hole above the urinary sphincter (in her stomach) and you cath through that hole instead of through the regular spot.
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