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.
Wednesday, October 9, 2013
A good plan and a bad IV
Well another IV bites the dust. When they put the new one in we will be on number 6 in 8 days. Apparently the antibiotics make them go bad quickly. They will be placing a PICC line (more permanent IV stitched in place) while she is in the OR (Operating Room). She will need the PICC line to come home on IV antibiotics.
They are hoping to take her into the OR within an hour. I HIGHLY doubt it.
Neurosurgery will go first. They will make an incision over her existing baclofen pump (on her abdomen). They will pull out the pump and pull as much tubing as they can out that incision. Then they will cut off the tubing.
Neurosurgery will then be done. They will flip her over onto her stomach. Orthopedic Surgery will make an incision down low on her back where the tubing is. They will remove the tubing and clean out the infection. They will then look for the other fluid pocket. They may leave a wound suction device in the wound (which leaves the wound open).
The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU. I think ICu sounds like a good idea. She is going to have a lot going on.
I also talked to the rehab team about getting her in for Phenol injections. It is too soon for Botox, but she hasn't had phenol for over a year. Phenol helps her muscles relax. They said they would set it up.
Rehab has ordered oral baclofen every 6 hours after surgery. I hope we can change it before we go home. I am only good at doing meds twice a day...anything more than that is a PAIN!!!
Rehab asked what dose of oral baclofen she was on before she got her pump. I almost laughed out loud. She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.
I asked how long the pump needed to be out before replacing it. They said the soonest they have ever done is 3 months, but 6 months is recommended. Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.
Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.
They turned down the pump a second time this morning to help with the withdrawals. If we had more time we could wean her off slowly. But that is not an option.
We have given her a second dose of oral baclofen. She was really agitated and shaky.
She had a bath (her last for a while I'm sure).
Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.
As the IV team came in to replace her IV we discovered another problem she is going to have. I was committing to have her wear her arm braces for about 20 out of 24 hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out). But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.
One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria. We do not know exactly which bug. However, Ecoli is a gram positive bacteria and that is what her spine infection was last year. I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics. I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.
So I think everyone is thinking the two infections are related. We will see what grows when the culture grows out and what antibiotics it is susceptible to.
I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again. That would be almost worth all of this!
And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort. I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything. So maybe it's related to the infection. Maybe not.
They are hoping to take her into the OR within an hour. I HIGHLY doubt it.
Neurosurgery will go first. They will make an incision over her existing baclofen pump (on her abdomen). They will pull out the pump and pull as much tubing as they can out that incision. Then they will cut off the tubing.
Neurosurgery will then be done. They will flip her over onto her stomach. Orthopedic Surgery will make an incision down low on her back where the tubing is. They will remove the tubing and clean out the infection. They will then look for the other fluid pocket. They may leave a wound suction device in the wound (which leaves the wound open).
The rehab team (that is in charge of baclofen pumps) wants her in ICU tonight, but her primary team wants to see if she can come back to her normal room in NTU. I think ICu sounds like a good idea. She is going to have a lot going on.
I also talked to the rehab team about getting her in for Phenol injections. It is too soon for Botox, but she hasn't had phenol for over a year. Phenol helps her muscles relax. They said they would set it up.
Rehab has ordered oral baclofen every 6 hours after surgery. I hope we can change it before we go home. I am only good at doing meds twice a day...anything more than that is a PAIN!!!
Rehab asked what dose of oral baclofen she was on before she got her pump. I almost laughed out loud. She had her first pump when she was 3 years old and had a revision 2 years ago (to replace the battery). Oral baclofen was 8 years and way too many meds ago to remember.
I asked how long the pump needed to be out before replacing it. They said the soonest they have ever done is 3 months, but 6 months is recommended. Blah...that means 6 months of antibiotics (I'm guessing) and 6 months of oral baclofen.
Who knows, maybe we'll get rid of the pump and decide we don't want to replace it.
They turned down the pump a second time this morning to help with the withdrawals. If we had more time we could wean her off slowly. But that is not an option.
We have given her a second dose of oral baclofen. She was really agitated and shaky.
She had a bath (her last for a while I'm sure).
Before surgery they will give her a bolus (all at once dose) of baclofen through her pump into her CSF fluid.
As the IV team came in to replace her IV we discovered another problem she is going to have. I was committing to have her wear her arm braces for about 20 out of 24 hours per day (like serial casting that she has done before) for a while to stretch out her muscles since we are so worried about contractures (tight muscles you can't stretch out). But the PICC line will not allow her to put the arm brace on whichever arm gets the PICC.
One of the reasons we were able to convince orthopedic surgery to come in (they were reluctant) is that the pus they pulled out yesterday is gram positive bacteria. We do not know exactly which bug. However, Ecoli is a gram positive bacteria and that is what her spine infection was last year. I also told them that I didn't want to clean out the one area and do six months of antibiotics and then have the other infection flare up and have to do another six months of antibiotics. I know it makes it a bigger surgery now, but let's get it over with and get her healthy once and for all.
So I think everyone is thinking the two infections are related. We will see what grows when the culture grows out and what antibiotics it is susceptible to.
I have this tiny little hope that getting rid of the infection will allow her to urinate on her own again. That would be almost worth all of this!
And one other thing that I am hoping for is...since her back surgery she cannot sit in her wheelchair for as long of periods of time without discomfort. I have spoken with Orthopedic surgery about this twice and they have done x-rays both times and have not seen anything. So maybe it's related to the infection. Maybe not.
Surgery...sometime today
They are trying to find a spot for her on the surgery schedule. We are hoping sooner rather than later...her feeds have already been off enough time that she could go now. So the longer we wait, the longer we have to watch her for low blood sugar and she will be hungry.
I still do not know the actual plan of what they intend to do in surgery. And they may not know until they get in there.
She had some shakiness last night, I am assuming due to lowering the baclofen. We gave her 1 dose of oral baclofen.
She had another fever and another ice bath last night. We have been doing them for fevers over 99 F (her typical temp is 93-95.5F). I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever. Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer. I only take the temp in the ear that is up (which would be the colder temp).
This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths. I put chux (disposable absobant pads) under her. I get the wash clothes wet and squeeze about half of the water out. I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead. I set an alarm for 10 minutes and watch netflix in between. When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace. I recheck her temperature about every 20 or 30 minutes. When she gets down in the 95 F range I remove the washcloths and the wet chux.
Last night it was really smart of her. One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no. We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups. I went over and checked her temperature and lo and behold it was in the 95 range. She was done, she was not hot anymore.
Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now. The resident examined her, but did not look under her tongue. The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me". I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."
What a smartie!
Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need? She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.
My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal. I do not know if this is standard protocol or not.
I still do not know the actual plan of what they intend to do in surgery. And they may not know until they get in there.
She had some shakiness last night, I am assuming due to lowering the baclofen. We gave her 1 dose of oral baclofen.
She had another fever and another ice bath last night. We have been doing them for fevers over 99 F (her typical temp is 93-95.5F). I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever. Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer. I only take the temp in the ear that is up (which would be the colder temp).
This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths. I put chux (disposable absobant pads) under her. I get the wash clothes wet and squeeze about half of the water out. I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead. I set an alarm for 10 minutes and watch netflix in between. When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace. I recheck her temperature about every 20 or 30 minutes. When she gets down in the 95 F range I remove the washcloths and the wet chux.
Last night it was really smart of her. One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no. We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups. I went over and checked her temperature and lo and behold it was in the 95 range. She was done, she was not hot anymore.
Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now. The resident examined her, but did not look under her tongue. The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me". I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."
What a smartie!
Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need? She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.
My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal. I do not know if this is standard protocol or not.
Tuesday, October 8, 2013
Oh I forgot
I forgot in the last post to say that the Dr. came and lowered her baclofen pump (by radio frequencies) 20% tonight to try and help with the withdrawal if they pull it out tomorrow.
Baclofen pump
The baclofen pump is a hockey puck sized device surgically implanted in her abdomen. Tubing runs under the skin, around her side and inserts into her spinal fluid (CSF). The pump is filled with a medicine called baclofen and it continually puts the baclofen into her spinal fluid. The medicine helps decrease spacticity (tight muscles). In Ellie it helps with tight arms and tight legs. Her torso is not tight. She has spacticity due to brain abnormalities.
The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.
I do not know the exact plan. I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing. I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.
They will be once again taking her off of her feeds and prepping her for surgery. Although We do not know if surgery is actually going to happen or what time or what they will be doing.
There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal. #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective. #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out). #4) with the baclofen withdrawal it can increase seizures.
They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).
The supposed infection is in her back along the tubing. There may be more infection up higher along her spine also.
I do not know the exact plan. I am assuming they will pull out the pump and the tubing and then proceed to kill all of the infection before doing another surgery to replace the pump and tubing. I do not know if orthopedic surgery will try to locate the other fluid collection along the spine and clean it out.
They will be once again taking her off of her feeds and prepping her for surgery. Although We do not know if surgery is actually going to happen or what time or what they will be doing.
There will be several problems we need to overcome...#1) if you stop the baclofen suddenly (like we would be doing) you can go into withdrawal. #2) without the pump she will need to take oral (g-tube) baclofen which isn't as effective. #3) we are also risking her developing even worse contractures (tight muscles that you cannot stretch out). #4) with the baclofen withdrawal it can increase seizures.
They have written orders for oral baclofen and ativan for tonight if she starts showing symptoms of withdrawal (muscle tightness, clonus (bouncing muscles), increased seizures).
Pus
Her procedure is done. They were not able to get much out. They were trying to pull out some of the fluid they saw by the baclofen pump tubing.
They sedated her. They tried with a smaller needle and a larger needle and were not able to get much out.
But it was OBVIOUSLY pus. Which means obviously infection. The radiologist thinks it was from her rods.
They did not try sampling up higher on her spine where they thought they might have seen some more fluid.
I don't know whether to be happy or sad about the infection. I have a feeling it is opening a BIIIIIIIIIIGGGGGGG can of worms. On the other hand it is nice to have an answer.
They sedated her. They tried with a smaller needle and a larger needle and were not able to get much out.
But it was OBVIOUSLY pus. Which means obviously infection. The radiologist thinks it was from her rods.
They did not try sampling up higher on her spine where they thought they might have seen some more fluid.
I don't know whether to be happy or sad about the infection. I have a feeling it is opening a BIIIIIIIIIIGGGGGGG can of worms. On the other hand it is nice to have an answer.
CRP
CRP is down another point...6.5 today.
She had another fever during the night last night. I gave her an ice bath for an hour and it brought it down.
She had another fever during the night last night. I gave her an ice bath for an hour and it brought it down.
Monday, October 7, 2013
I am OK
I should really be sooooo stressed, worried and frustrated. But I feel calm and OK with everything. I think it is due everyone's prayers on our behalf, so thank you!
2 PM
She is scheduled to go under sedation to draw a fluid sample tomorrow at 2 PM. We have slowly restarted her feeds. She can have her formula until 5 AM, then they will switch her to apple juice until 10 AM, then IV fluids until the procedure.
Then it will take 48 hours to culture the fluid sample.
They will be able (hopefully) to tell some things more quickly from the sample before the culture grows out.
Then it will take 48 hours to culture the fluid sample.
They will be able (hopefully) to tell some things more quickly from the sample before the culture grows out.
New plan
They are going to sedate her and use ultrasound to guide a needle and draw out a sample of the fluid around the tubing. They are trying to get it done today so that her going without food all day wasn't done for no reason, but if they can't work it out they will do it tomorrow. (Then she can go a third day with no food in her tummy).
Then they will culture the fluid and see if they can get any information from it. Is it from her stomach, is it CSF fluid, is it baclofen, is it infected, what antibiotic is it susceptible to?
If they can show that it is infected, then the neurosurgeons will be more likely to pull the tubing and baclofen pump.
She has been doing pretty good today. She slept really fitfully last night so she has taken a few naps today. She had a fever this morning and pain. But after we got the fever calmed down she has done ok the rest of the day (no fever and no pain).
Then they will culture the fluid and see if they can get any information from it. Is it from her stomach, is it CSF fluid, is it baclofen, is it infected, what antibiotic is it susceptible to?
If they can show that it is infected, then the neurosurgeons will be more likely to pull the tubing and baclofen pump.
She has been doing pretty good today. She slept really fitfully last night so she has taken a few naps today. She had a fever this morning and pain. But after we got the fever calmed down she has done ok the rest of the day (no fever and no pain).
No surgery at this point
Neurosurgery came by and explained their reasoning for not wanting to do surgery.
In a way I can see their point.
He said that the fluid did not show up on the CT (which it didn't). An ultrasound is not a really clear picture (which it's not). So he is not convinced that this is the problem.
He says you can trace the baclofen pump tubing the entire way (on CT) and it is not broken.
It is a fairly big surgery to replace a baclofen pump (which it is). So he would hate to remove a working baclofen pump and then have to do a fairly large surgery to replace it.
I asked if we could just sample the fluid around the tubing to see if it is truly infected. He said you could, but then you risk introducing infection. And since she has been on antibiotics it might not grow anything anyway.
He said her CRP is improving (which it is). But I pointed out that it should be cut in half each day and she has been on IV antibiotics for almost 1 week now.
I asked so if she is on antibiotics for a week and a half to 2 weeks and has sill not improved, would you be willing to go in at that point? He said maybe, but he still wants some compelling evidence to prove that it is infected.
I asked him about pulling out the vagel nerve stimulator so we could a least get an MRI to get a better picture of what is going on. He said you could, but he wouldn't suggest it because you are just putting her through an unnecessary surgery.
He is being very conservative which surprises me coming from a cocky neurosurgeon that act like they can fix the world.
There is another test that he wants to do (her hospitalists had mentioned this test also). You pull out some of Ellie's own blood and pull out the white blood cells. You infuse the white blood cells with radiation and then inject them back into her. Then you do x-rays and see where the white blood cells go (since white blood cells job is to repair damaged cells). Where they go indicates where the infection is. It sounds like a good test to do.
In a way I can see their point.
He said that the fluid did not show up on the CT (which it didn't). An ultrasound is not a really clear picture (which it's not). So he is not convinced that this is the problem.
He says you can trace the baclofen pump tubing the entire way (on CT) and it is not broken.
It is a fairly big surgery to replace a baclofen pump (which it is). So he would hate to remove a working baclofen pump and then have to do a fairly large surgery to replace it.
I asked if we could just sample the fluid around the tubing to see if it is truly infected. He said you could, but then you risk introducing infection. And since she has been on antibiotics it might not grow anything anyway.
He said her CRP is improving (which it is). But I pointed out that it should be cut in half each day and she has been on IV antibiotics for almost 1 week now.
I asked so if she is on antibiotics for a week and a half to 2 weeks and has sill not improved, would you be willing to go in at that point? He said maybe, but he still wants some compelling evidence to prove that it is infected.
I asked him about pulling out the vagel nerve stimulator so we could a least get an MRI to get a better picture of what is going on. He said you could, but he wouldn't suggest it because you are just putting her through an unnecessary surgery.
He is being very conservative which surprises me coming from a cocky neurosurgeon that act like they can fix the world.
There is another test that he wants to do (her hospitalists had mentioned this test also). You pull out some of Ellie's own blood and pull out the white blood cells. You infuse the white blood cells with radiation and then inject them back into her. Then you do x-rays and see where the white blood cells go (since white blood cells job is to repair damaged cells). Where they go indicates where the infection is. It sounds like a good test to do.
No surgery?!?!?!
Her CRP is down from 8.4 yesterday to 7.2 today. So yes, it is improving...but they would still expect it to be cut in half each day.
Neurosurgery has still not come by today.
Her primary team of Dr.'s taking care of her (the hospitalists) came and said that neurosugery is dragging their feet. They are not sure they even want to go in and do surgery. I do not know what their thinking is.
The hospitalists think they should do surgery and I think they should do surgery. She has been on strong antibioitics for almost 1 week now, she is not improving like they think she should. Her CRP is not being cut in half each day. She is still having pain and fevers. She needs additional intervention. Even if they don't want to pull out the baclofen pump and tubing, then pull out her VNS so that we can actually do an MRI to get better information to prove to you that she needs surgery.
The orthopedic surgeons say they won't be able to get to the suspicious area on her spine from the incision that the neurosurgeons make (if the neurosurgeons decide to do surgery). So they are kind of dragging their feet too.
I am really surprised that Infectious Disease isn't adamant about pulling out the baclofen pump tubing and pump. They are leaving it up to neurosurgery. Weird.
The hospitalists say that they are trying to arrange for neurosurgery and orthopedic surgery to sit down together and come up with a plan. Yeah well...there is this concept floating out there called a "medical home". It is supposed to be just that...all of your specialists sitting down together (or at least conference calling) and discussing the patient and coming up with the best plan. IT JUST DOESN'T HAPPEN! It is a great plan in theory...but that's all it is...a theory.
I am sure in this case they will be able to sit down and work something out, but it's not going to happen fast. So they shouldn't have pulled Ellie off of her food to prep her for surgery if they didn't actually have a plan.
FRUSTRATING!
Neurosurgery has still not come by today.
Her primary team of Dr.'s taking care of her (the hospitalists) came and said that neurosugery is dragging their feet. They are not sure they even want to go in and do surgery. I do not know what their thinking is.
The hospitalists think they should do surgery and I think they should do surgery. She has been on strong antibioitics for almost 1 week now, she is not improving like they think she should. Her CRP is not being cut in half each day. She is still having pain and fevers. She needs additional intervention. Even if they don't want to pull out the baclofen pump and tubing, then pull out her VNS so that we can actually do an MRI to get better information to prove to you that she needs surgery.
The orthopedic surgeons say they won't be able to get to the suspicious area on her spine from the incision that the neurosurgeons make (if the neurosurgeons decide to do surgery). So they are kind of dragging their feet too.
I am really surprised that Infectious Disease isn't adamant about pulling out the baclofen pump tubing and pump. They are leaving it up to neurosurgery. Weird.
The hospitalists say that they are trying to arrange for neurosurgery and orthopedic surgery to sit down together and come up with a plan. Yeah well...there is this concept floating out there called a "medical home". It is supposed to be just that...all of your specialists sitting down together (or at least conference calling) and discussing the patient and coming up with the best plan. IT JUST DOESN'T HAPPEN! It is a great plan in theory...but that's all it is...a theory.
I am sure in this case they will be able to sit down and work something out, but it's not going to happen fast. So they shouldn't have pulled Ellie off of her food to prep her for surgery if they didn't actually have a plan.
FRUSTRATING!
Surgery bumped
For an unknown reason surgery has been bumped to 1 or 2 PM...which means she will probably go in at 4 PM. IT is frustrating because they switched her applejuice at midnight and then at 6 AM they switched her to IV fluids only. And they had her off of food all day yesterday "just in case" they needed to operate yesterday.
Neurosurgery hasn't even come by to day to talk to me about what they are actually going to do. I don't know if they are #1)just going to clean out the fluid #2) remove the tubing and clean her out #3) remove he tubing and pump and clean her out
I understand that they may not know until they get in and try to tell if it is infected...but at least come by and tell me that.
I asked Infectious Disease if this infection was related to her spine surgery last year. They said it could be, but since she has been off antibiotics since March it is less likely.
And I still haven't met the new orthopedic surgeon. I think I will feel better once I meet him. It is just frustrating knowing that you are trusting your child's life in this Dr.'s hands and you haven't even met them.
As you can tell I am starting to complain, which if you read my previous post means that I am stressed.
Neurosurgery hasn't even come by to day to talk to me about what they are actually going to do. I don't know if they are #1)just going to clean out the fluid #2) remove the tubing and clean her out #3) remove he tubing and pump and clean her out
I understand that they may not know until they get in and try to tell if it is infected...but at least come by and tell me that.
I asked Infectious Disease if this infection was related to her spine surgery last year. They said it could be, but since she has been off antibiotics since March it is less likely.
And I still haven't met the new orthopedic surgeon. I think I will feel better once I meet him. It is just frustrating knowing that you are trusting your child's life in this Dr.'s hands and you haven't even met them.
As you can tell I am starting to complain, which if you read my previous post means that I am stressed.
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