Ellie has been crying and moaning all morning. We have given her tylenol, oxycodone and morphine. Her heartrate and respirations (breaths per minute) are still high.
We have increased her regularly scheduled baclofen dose.
She is asleep now, but her heartrate is still high.
It is nearly impossible to tell if she is in pain or withdrawal. The rehab team says assume it is withdrawal and treat it, then treat the pain. They also said as long as you are still breathing OK, you really can't overdose on baclofen. There are recommended amounts, but you can go higher.
She does not cry or moan hardly ever...so you know this is really serious.
They are still planning on moving us back to NTU (Neuroscience Trauma Unit) at some point today .
Thursday, October 10, 2013
Pictures from this morning (Thurs 10/10/13)
Wide awake--more than normal!
Her belly wound (under the bandage) and the 2 drains they have coming out of her back. The drains will stay in up to 3 days, it depends on how much they are draining. She has to stay flat on her back for 24 hours, so I haven't seen the wound on her back.
Her PICC line on her right arm.
Close-up of the PICC.
A good night and wide awake
She had good vitals during the night. Her heartrate was actually down below 100. Repirations and oxygen were good. Her blood pressure was even down a bit (it was high 2 nights ago and all day yesterday).
They only gave her regularly scheduled doses of baclofen every 6 hours (other than the 1 dose I posted about earlier).
Her PICC line is in kind of a bad spot because it is a little bit on the back of her arm which will be resting on the mattress when she is laying down or on the wheelchair when she is sitting up, so that means we will have to be super conscious of it not getting bedsores from pressure.
She slept the whole night (probably due to anesthesia).
She is WIDE awake this morning. I mean WIDE awake. Her eyes are huge. The PICU Dr.'s think it may have to due with not getting the intrathecal (into her spinal fluid) baclofen. They think it may have been making her sleepy. Maybe we will like not having the baclofen pump?!?!??!?!?!?!?
Her arms are tighter than normal. They may give her an extra dose of baclofen now and then raise her regularly schedule dose.
These Dr.'s have stopped by already this morning PICU, Neurosurgery, Orthopedic Surgery, Infectious Disease...we are only missing the Rehab Dr.'s.
And I really liked the Orthopedic Surgery Dr. again. I think I will keep him.
Now that she is awake her heart rate and respirations have jumped up. We gave her some pain meds.
The Orthopedic surgeon said they gave her quite a bit of local anesthesia in the wounds to numb the areas. He said that lasts about 8 hours, so that has probably worn off.
They only gave her regularly scheduled doses of baclofen every 6 hours (other than the 1 dose I posted about earlier).
Her PICC line is in kind of a bad spot because it is a little bit on the back of her arm which will be resting on the mattress when she is laying down or on the wheelchair when she is sitting up, so that means we will have to be super conscious of it not getting bedsores from pressure.
She slept the whole night (probably due to anesthesia).
She is WIDE awake this morning. I mean WIDE awake. Her eyes are huge. The PICU Dr.'s think it may have to due with not getting the intrathecal (into her spinal fluid) baclofen. They think it may have been making her sleepy. Maybe we will like not having the baclofen pump?!?!??!?!?!?!?
Her arms are tighter than normal. They may give her an extra dose of baclofen now and then raise her regularly schedule dose.
These Dr.'s have stopped by already this morning PICU, Neurosurgery, Orthopedic Surgery, Infectious Disease...we are only missing the Rehab Dr.'s.
And I really liked the Orthopedic Surgery Dr. again. I think I will keep him.
Now that she is awake her heart rate and respirations have jumped up. We gave her some pain meds.
The Orthopedic surgeon said they gave her quite a bit of local anesthesia in the wounds to numb the areas. He said that lasts about 8 hours, so that has probably worn off.
Wednesday, October 9, 2013
PICU
So yes, she did end up in PICU. I don't know why they took her to PACU (post-op recovery) they normally go right to PICU. There was miscommunication between all of her Dr.'s she ended up in the wrong place. This has been the most disjointed hospital stay with the worst communication.
An hour and a half after surgery she woke up for a few hours. Had some shivering (withdrawal). Now she is getting her meds and going to sleep.
Since she is hard to read her communication I am afraid to go to sleep tonight because I am afraid they will be missing her cues. I'm sure I will go to sleep eventually, but right now I'm nervous. PICU will be better than on the floor however because at least the nurse is 1 on 1 or 1 on 2 and are basically in the room with her all of the time.
I do love the new PICU hospital rooms. They are roomy and actually have room for the wheelchair and storage for parents and child's things. And they now let a parent sleep in the room (they didn't used to let a parent stay if you were in ICU). It is much much much better. The weird thing is they don't let any visitors (other than parents) come between 6:30 and 8 PM or AM. Those are prime visiting hours.
An hour and a half after surgery she woke up for a few hours. Had some shivering (withdrawal). Now she is getting her meds and going to sleep.
Since she is hard to read her communication I am afraid to go to sleep tonight because I am afraid they will be missing her cues. I'm sure I will go to sleep eventually, but right now I'm nervous. PICU will be better than on the floor however because at least the nurse is 1 on 1 or 1 on 2 and are basically in the room with her all of the time.
I do love the new PICU hospital rooms. They are roomy and actually have room for the wheelchair and storage for parents and child's things. And they now let a parent sleep in the room (they didn't used to let a parent stay if you were in ICU). It is much much much better. The weird thing is they don't let any visitors (other than parents) come between 6:30 and 8 PM or AM. Those are prime visiting hours.
Sleepy
They took her to PACU (recovery) instead of PICU (ICU). I'm not sure if it's just because she is so sleepy, or they have decided not to send her to PICU, or they didn't get the message that she is going to PICU.
She is really sleepy and has not woken up yet, so I have not seen her yet.
She is really sleepy and has not woken up yet, so I have not seen her yet.
Out of the OR
She came out of the OR at 4:32 PM. I will get to see her at approximately 5:00ish. She will go straight to PICU and I will see her there.
Ortho done
So I met the new Orthopedic Surgeon at 4 PM. And dang it...he was really nice.
He said he only saw infection along the baclofen pump tubing tract. He looked along the spine from L2-L5 (so way down low). Her rods and spinal fusion are from T3 to pelvis (basically her entire back).
He did not see any infection along the spinal column or the rods or anywhere else. He left 2 drains in to drain any fluid. One in the infected spot (the baclofen pump tract). He saw another space, but it had no fluid or puss or anything in it. This is where he left the second drain. The drains will stay in for a few days and then be pulled out. She will not need to go back to the OR to pull out the drains and the holes will not need to be stitched up...they are very small drains and the holes will close on their own.
He said her spine and hardware look nice and solid.
I will not need to follow up with him unless I see signs of infection or have other orthopedic surgery needs.
He said he only saw infection along the baclofen pump tubing tract. He looked along the spine from L2-L5 (so way down low). Her rods and spinal fusion are from T3 to pelvis (basically her entire back).
He did not see any infection along the spinal column or the rods or anywhere else. He left 2 drains in to drain any fluid. One in the infected spot (the baclofen pump tract). He saw another space, but it had no fluid or puss or anything in it. This is where he left the second drain. The drains will stay in for a few days and then be pulled out. She will not need to go back to the OR to pull out the drains and the holes will not need to be stitched up...they are very small drains and the holes will close on their own.
He said her spine and hardware look nice and solid.
I will not need to follow up with him unless I see signs of infection or have other orthopedic surgery needs.
Neurosurgery done
Neurosurgery came and talked to me at about 2:50. He couldn't see any infection in the front. He acted like "I don't even know why we are doing this."
These were his exact words "I hope we did this for the right reasons."
Whatever.
These were his exact words "I hope we did this for the right reasons."
Whatever.
1:45
She went into surgery at approximately 1:45.
I really don't know how long it is slated for. The communication on this surgery has been TERRIBLE. In fact, I haven't even met the orthopedic surgeon...and won't meet him until after he has operated. Which also means, he has never met Ellie. That is bad. I'm glad to know he cares about Ellie enough to come to her room and meet her.
Needless to say unless he REALLY impresses me...he WILL NOT be Ellie's ongoing orthopedic surgeon. I know it is going to be hard to live up to Dr. Klatt (he was our favorite and now he moved to Colorado). But I have never NOT met a surgeon before surgery. That is pretty bad in my book.
She will be going to PICU at least overnight.
I really don't know how long it is slated for. The communication on this surgery has been TERRIBLE. In fact, I haven't even met the orthopedic surgeon...and won't meet him until after he has operated. Which also means, he has never met Ellie. That is bad. I'm glad to know he cares about Ellie enough to come to her room and meet her.
Needless to say unless he REALLY impresses me...he WILL NOT be Ellie's ongoing orthopedic surgeon. I know it is going to be hard to live up to Dr. Klatt (he was our favorite and now he moved to Colorado). But I have never NOT met a surgeon before surgery. That is pretty bad in my book.
She will be going to PICU at least overnight.
A good plan and a bad IV
Well another IV bites the dust. When they put the new one in we will be on number 6 in 8 days. Apparently the antibiotics make them go bad quickly. They will be placing a PICC line (more permanent IV stitched in place) while she is in the OR (Operating Room). She will need the PICC line to come home on IV antibiotics.
They are hoping to take her into the OR within an hour. I HIGHLY doubt it.
Neurosurgery will go first. They will make an incision over her existing baclofen pump (on her abdomen). They will pull out the pump and pull as much tubing as they can out that incision. Then they will cut off the tubing.
Neurosurgery will then be done. They will flip her over onto her stomach. Orthopedic Surgery will make an incision down low on her back where the tubing is. They will remove the tubing and clean out the infection. They will then look for the other fluid pocket. They may leave a wound suction device in the wound (which leaves the wound open).
The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU. I think ICu sounds like a good idea. She is going to have a lot going on.
I also talked to the rehab team about getting her in for Phenol injections. It is too soon for Botox, but she hasn't had phenol for over a year. Phenol helps her muscles relax. They said they would set it up.
Rehab has ordered oral baclofen every 6 hours after surgery. I hope we can change it before we go home. I am only good at doing meds twice a day...anything more than that is a PAIN!!!
Rehab asked what dose of oral baclofen she was on before she got her pump. I almost laughed out loud. She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.
I asked how long the pump needed to be out before replacing it. They said the soonest they have ever done is 3 months, but 6 months is recommended. Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.
Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.
They turned down the pump a second time this morning to help with the withdrawals. If we had more time we could wean her off slowly. But that is not an option.
We have given her a second dose of oral baclofen. She was really agitated and shaky.
She had a bath (her last for a while I'm sure).
Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.
As the IV team came in to replace her IV we discovered another problem she is going to have. I was committing to have her wear her arm braces for about 20 out of 24 hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out). But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.
One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria. We do not know exactly which bug. However, Ecoli is a gram positive bacteria and that is what her spine infection was last year. I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics. I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.
So I think everyone is thinking the two infections are related. We will see what grows when the culture grows out and what antibiotics it is susceptible to.
I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again. That would be almost worth all of this!
And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort. I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything. So maybe it's related to the infection. Maybe not.
They are hoping to take her into the OR within an hour. I HIGHLY doubt it.
Neurosurgery will go first. They will make an incision over her existing baclofen pump (on her abdomen). They will pull out the pump and pull as much tubing as they can out that incision. Then they will cut off the tubing.
Neurosurgery will then be done. They will flip her over onto her stomach. Orthopedic Surgery will make an incision down low on her back where the tubing is. They will remove the tubing and clean out the infection. They will then look for the other fluid pocket. They may leave a wound suction device in the wound (which leaves the wound open).
The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU. I think ICu sounds like a good idea. She is going to have a lot going on.
I also talked to the rehab team about getting her in for Phenol injections. It is too soon for Botox, but she hasn't had phenol for over a year. Phenol helps her muscles relax. They said they would set it up.
Rehab has ordered oral baclofen every 6 hours after surgery. I hope we can change it before we go home. I am only good at doing meds twice a day...anything more than that is a PAIN!!!
Rehab asked what dose of oral baclofen she was on before she got her pump. I almost laughed out loud. She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.
I asked how long the pump needed to be out before replacing it. They said the soonest they have ever done is 3 months, but 6 months is recommended. Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.
Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.
They turned down the pump a second time this morning to help with the withdrawals. If we had more time we could wean her off slowly. But that is not an option.
We have given her a second dose of oral baclofen. She was really agitated and shaky.
She had a bath (her last for a while I'm sure).
Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.
As the IV team came in to replace her IV we discovered another problem she is going to have. I was committing to have her wear her arm braces for about 20 out of 24 hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out). But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.
One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria. We do not know exactly which bug. However, Ecoli is a gram positive bacteria and that is what her spine infection was last year. I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics. I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.
So I think everyone is thinking the two infections are related. We will see what grows when the culture grows out and what antibiotics it is susceptible to.
I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again. That would be almost worth all of this!
And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort. I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything. So maybe it's related to the infection. Maybe not.
Surgery...sometime today
They are trying to find a spot for her on the surgery schedule. We are hoping sooner rather than later...her feeds have already been off enough time that she could go now. So the longer we wait, the longer we have to watch her for low blood sugar and she will be hungry.
I still do not know the actual plan of what they intend to do in surgery. And they may not know until they get in there.
She had some shakiness last night, I am assuming due to lowering the baclofen. We gave her 1 dose of oral baclofen.
She had another fever and another ice bath last night. We have been doing them for fevers over 99 F (her typical temp is 93-95.5F). I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever. Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer. I only take the temp in the ear that is up (which would be the colder temp).
This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths. I put chux (disposable absobant pads) under her. I get the wash clothes wet and squeeze about half of the water out. I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead. I set an alarm for 10 minutes and watch netflix in between. When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace. I recheck her temperature about every 20 or 30 minutes. When she gets down in the 95 F range I remove the washcloths and the wet chux.
Last night it was really smart of her. One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no. We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups. I went over and checked her temperature and lo and behold it was in the 95 range. She was done, she was not hot anymore.
Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now. The resident examined her, but did not look under her tongue. The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me". I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."
What a smartie!
Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need? She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.
My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal. I do not know if this is standard protocol or not.
I still do not know the actual plan of what they intend to do in surgery. And they may not know until they get in there.
She had some shakiness last night, I am assuming due to lowering the baclofen. We gave her 1 dose of oral baclofen.
She had another fever and another ice bath last night. We have been doing them for fevers over 99 F (her typical temp is 93-95.5F). I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever. Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer. I only take the temp in the ear that is up (which would be the colder temp).
This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths. I put chux (disposable absobant pads) under her. I get the wash clothes wet and squeeze about half of the water out. I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead. I set an alarm for 10 minutes and watch netflix in between. When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace. I recheck her temperature about every 20 or 30 minutes. When she gets down in the 95 F range I remove the washcloths and the wet chux.
Last night it was really smart of her. One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no. We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups. I went over and checked her temperature and lo and behold it was in the 95 range. She was done, she was not hot anymore.
Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now. The resident examined her, but did not look under her tongue. The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me". I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."
What a smartie!
Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need? She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.
My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal. I do not know if this is standard protocol or not.
Tuesday, October 8, 2013
Oh I forgot
I forgot in the last post to say that the Dr. came and lowered her baclofen pump (by radio frequencies) 20% tonight to try and help with the withdrawal if they pull it out tomorrow.
Baclofen pump
The baclofen pump is a hockey puck sized device surgically implanted in her abdomen. Tubing runs under the skin, around her side and inserts into her spinal fluid (CSF). The pump is filled with a medicine called baclofen and it continually puts the baclofen into her spinal fluid. The medicine helps decrease spacticity (tight muscles). In Ellie it helps with tight arms and tight legs. Her torso is not tight. She has spacticity due to brain abnormalities.
The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.
I do not know the exact plan. I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing. I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.
They will be once again taking her off of her feeds and prepping her for surgery. Although We do not know if surgery is actually going to happen or what time or what they will be doing.
There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal. #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective. #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out). #4) with the baclofen withdrawal it can increase seizures.
They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).
The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.
I do not know the exact plan. I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing. I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.
They will be once again taking her off of her feeds and prepping her for surgery. Although We do not know if surgery is actually going to happen or what time or what they will be doing.
There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal. #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective. #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out). #4) with the baclofen withdrawal it can increase seizures.
They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).
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