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.
Tuesday, October 8, 2013
CRP
CRP is down another point...6.5 today.
She had another fever during the night last night. I gave her an ice bath for an hour and it brought it down.
She had another fever during the night last night. I gave her an ice bath for an hour and it brought it down.
Monday, October 7, 2013
I am OK
I should really be sooooo stressed, worried and frustrated. But I feel calm and OK with everything. I think it is due everyone's prayers on our behalf, so thank you!
2 PM
She is scheduled to go under sedation to draw a fluid sample tomorrow at 2 PM. We have slowly restarted her feeds. She can have her formula until 5 AM, then they will switch her to apple juice until 10 AM, then IV fluids until the procedure.
Then it will take 48 hours to culture the fluid sample.
They will be able (hopefully) to tell some things more quickly from the sample before the culture grows out.
Then it will take 48 hours to culture the fluid sample.
They will be able (hopefully) to tell some things more quickly from the sample before the culture grows out.
New plan
They are going to sedate her and use ultrasound to guide a needle and draw out a sample of the fluid around the tubing. They are trying to get it done today so that her going without food all day wasn't done for no reason, but if they can't work it out they will do it tomorrow. (Then she can go a third day with no food in her tummy).
Then they will culture the fluid and see if they can get any information from it. Is it from her stomach, is it CSF fluid, is it baclofen, is it infected, what antibiotic is it susceptible to?
If they can show that it is infected, then the neurosurgeons will be more likely to pull the tubing and baclofen pump.
She has been doing pretty good today. She slept really fitfully last night so she has taken a few naps today. She had a fever this morning and pain. But after we got the fever calmed down she has done ok the rest of the day (no fever and no pain).
Then they will culture the fluid and see if they can get any information from it. Is it from her stomach, is it CSF fluid, is it baclofen, is it infected, what antibiotic is it susceptible to?
If they can show that it is infected, then the neurosurgeons will be more likely to pull the tubing and baclofen pump.
She has been doing pretty good today. She slept really fitfully last night so she has taken a few naps today. She had a fever this morning and pain. But after we got the fever calmed down she has done ok the rest of the day (no fever and no pain).
No surgery at this point
Neurosurgery came by and explained their reasoning for not wanting to do surgery.
In a way I can see their point.
He said that the fluid did not show up on the CT (which it didn't). An ultrasound is not a really clear picture (which it's not). So he is not convinced that this is the problem.
He says you can trace the baclofen pump tubing the entire way (on CT) and it is not broken.
It is a fairly big surgery to replace a baclofen pump (which it is). So he would hate to remove a working baclofen pump and then have to do a fairly large surgery to replace it.
I asked if we could just sample the fluid around the tubing to see if it is truly infected. He said you could, but then you risk introducing infection. And since she has been on antibiotics it might not grow anything anyway.
He said her CRP is improving (which it is). But I pointed out that it should be cut in half each day and she has been on IV antibiotics for almost 1 week now.
I asked so if she is on antibiotics for a week and a half to 2 weeks and has sill not improved, would you be willing to go in at that point? He said maybe, but he still wants some compelling evidence to prove that it is infected.
I asked him about pulling out the vagel nerve stimulator so we could a least get an MRI to get a better picture of what is going on. He said you could, but he wouldn't suggest it because you are just putting her through an unnecessary surgery.
He is being very conservative which surprises me coming from a cocky neurosurgeon that act like they can fix the world.
There is another test that he wants to do (her hospitalists had mentioned this test also). You pull out some of Ellie's own blood and pull out the white blood cells. You infuse the white blood cells with radiation and then inject them back into her. Then you do x-rays and see where the white blood cells go (since white blood cells job is to repair damaged cells). Where they go indicates where the infection is. It sounds like a good test to do.
In a way I can see their point.
He said that the fluid did not show up on the CT (which it didn't). An ultrasound is not a really clear picture (which it's not). So he is not convinced that this is the problem.
He says you can trace the baclofen pump tubing the entire way (on CT) and it is not broken.
It is a fairly big surgery to replace a baclofen pump (which it is). So he would hate to remove a working baclofen pump and then have to do a fairly large surgery to replace it.
I asked if we could just sample the fluid around the tubing to see if it is truly infected. He said you could, but then you risk introducing infection. And since she has been on antibiotics it might not grow anything anyway.
He said her CRP is improving (which it is). But I pointed out that it should be cut in half each day and she has been on IV antibiotics for almost 1 week now.
I asked so if she is on antibiotics for a week and a half to 2 weeks and has sill not improved, would you be willing to go in at that point? He said maybe, but he still wants some compelling evidence to prove that it is infected.
I asked him about pulling out the vagel nerve stimulator so we could a least get an MRI to get a better picture of what is going on. He said you could, but he wouldn't suggest it because you are just putting her through an unnecessary surgery.
He is being very conservative which surprises me coming from a cocky neurosurgeon that act like they can fix the world.
There is another test that he wants to do (her hospitalists had mentioned this test also). You pull out some of Ellie's own blood and pull out the white blood cells. You infuse the white blood cells with radiation and then inject them back into her. Then you do x-rays and see where the white blood cells go (since white blood cells job is to repair damaged cells). Where they go indicates where the infection is. It sounds like a good test to do.
No surgery?!?!?!
Her CRP is down from 8.4 yesterday to 7.2 today. So yes, it is improving...but they would still expect it to be cut in half each day.
Neurosurgery has still not come by today.
Her primary team of Dr.'s taking care of her (the hospitalists) came and said that neurosugery is dragging their feet. They are not sure they even want to go in and do surgery. I do not know what their thinking is.
The hospitalists think they should do surgery and I think they should do surgery. She has been on strong antibioitics for almost 1 week now, she is not improving like they think she should. Her CRP is not being cut in half each day. She is still having pain and fevers. She needs additional intervention. Even if they don't want to pull out the baclofen pump and tubing, then pull out her VNS so that we can actually do an MRI to get better information to prove to you that she needs surgery.
The orthopedic surgeons say they won't be able to get to the suspicious area on her spine from the incision that the neurosurgeons make (if the neurosurgeons decide to do surgery). So they are kind of dragging their feet too.
I am really surprised that Infectious Disease isn't adamant about pulling out the baclofen pump tubing and pump. They are leaving it up to neurosurgery. Weird.
The hospitalists say that they are trying to arrange for neurosurgery and orthopedic surgery to sit down together and come up with a plan. Yeah well...there is this concept floating out there called a "medical home". It is supposed to be just that...all of your specialists sitting down together (or at least conference calling) and discussing the patient and coming up with the best plan. IT JUST DOESN'T HAPPEN! It is a great plan in theory...but that's all it is...a theory.
I am sure in this case they will be able to sit down and work something out, but it's not going to happen fast. So they shouldn't have pulled Ellie off of her food to prep her for surgery if they didn't actually have a plan.
FRUSTRATING!
Neurosurgery has still not come by today.
Her primary team of Dr.'s taking care of her (the hospitalists) came and said that neurosugery is dragging their feet. They are not sure they even want to go in and do surgery. I do not know what their thinking is.
The hospitalists think they should do surgery and I think they should do surgery. She has been on strong antibioitics for almost 1 week now, she is not improving like they think she should. Her CRP is not being cut in half each day. She is still having pain and fevers. She needs additional intervention. Even if they don't want to pull out the baclofen pump and tubing, then pull out her VNS so that we can actually do an MRI to get better information to prove to you that she needs surgery.
The orthopedic surgeons say they won't be able to get to the suspicious area on her spine from the incision that the neurosurgeons make (if the neurosurgeons decide to do surgery). So they are kind of dragging their feet too.
I am really surprised that Infectious Disease isn't adamant about pulling out the baclofen pump tubing and pump. They are leaving it up to neurosurgery. Weird.
The hospitalists say that they are trying to arrange for neurosurgery and orthopedic surgery to sit down together and come up with a plan. Yeah well...there is this concept floating out there called a "medical home". It is supposed to be just that...all of your specialists sitting down together (or at least conference calling) and discussing the patient and coming up with the best plan. IT JUST DOESN'T HAPPEN! It is a great plan in theory...but that's all it is...a theory.
I am sure in this case they will be able to sit down and work something out, but it's not going to happen fast. So they shouldn't have pulled Ellie off of her food to prep her for surgery if they didn't actually have a plan.
FRUSTRATING!
Surgery bumped
For an unknown reason surgery has been bumped to 1 or 2 PM...which means she will probably go in at 4 PM. IT is frustrating because they switched her applejuice at midnight and then at 6 AM they switched her to IV fluids only. And they had her off of food all day yesterday "just in case" they needed to operate yesterday.
Neurosurgery hasn't even come by to day to talk to me about what they are actually going to do. I don't know if they are #1)just going to clean out the fluid #2) remove the tubing and clean her out #3) remove he tubing and pump and clean her out
I understand that they may not know until they get in and try to tell if it is infected...but at least come by and tell me that.
I asked Infectious Disease if this infection was related to her spine surgery last year. They said it could be, but since she has been off antibiotics since March it is less likely.
And I still haven't met the new orthopedic surgeon. I think I will feel better once I meet him. It is just frustrating knowing that you are trusting your child's life in this Dr.'s hands and you haven't even met them.
As you can tell I am starting to complain, which if you read my previous post means that I am stressed.
Neurosurgery hasn't even come by to day to talk to me about what they are actually going to do. I don't know if they are #1)just going to clean out the fluid #2) remove the tubing and clean her out #3) remove he tubing and pump and clean her out
I understand that they may not know until they get in and try to tell if it is infected...but at least come by and tell me that.
I asked Infectious Disease if this infection was related to her spine surgery last year. They said it could be, but since she has been off antibiotics since March it is less likely.
And I still haven't met the new orthopedic surgeon. I think I will feel better once I meet him. It is just frustrating knowing that you are trusting your child's life in this Dr.'s hands and you haven't even met them.
As you can tell I am starting to complain, which if you read my previous post means that I am stressed.
It's baaaaa...aaaack!
Her fever is back with a vengeance. Tylenol has not brought it down. Rags in ice water all aver her body has not brought it down. Next will be a cool bath.
She has also been in pain and grinding her teeth.
Under her tongue looks swollen and raw. I don't think it is self inflicted (from grinding her teeth) because her top teeth go over her bottom teeth. I thought maybe it is an allergic reaction to the meropenum. The intern came and looked at it (but of course he doesn't know anything, but pretends that he does), he will go talk with his attending.
Have I mentioned that I hate that this is a teaching hospital. I know it's necessary in order to become a Dr. But it is annoying as a patient (or patient's mother).
I have noticed several things about myself while in the hospital...when start complaining it means I'm stressed. When I ask for prayers it means I'm truly worried.
I do have to say I love NTU (Neuroscience trauma unit.) I think the Nurses here are so knowledgeable and so nice. The nurses really listen to me, believe what I say and pass it on to the Dr.'s. If I ask for something they make sure it gets done immediately. Nurses she has had previously will stop by and say hi and see how Ellie is doing. They try and remember my name and are good at remembering to call Ellie, "Ellie"...instead of Eleanor (indicating to me that they know her).
She has also been in pain and grinding her teeth.
Under her tongue looks swollen and raw. I don't think it is self inflicted (from grinding her teeth) because her top teeth go over her bottom teeth. I thought maybe it is an allergic reaction to the meropenum. The intern came and looked at it (but of course he doesn't know anything, but pretends that he does), he will go talk with his attending.
Have I mentioned that I hate that this is a teaching hospital. I know it's necessary in order to become a Dr. But it is annoying as a patient (or patient's mother).
I have noticed several things about myself while in the hospital...when start complaining it means I'm stressed. When I ask for prayers it means I'm truly worried.
I do have to say I love NTU (Neuroscience trauma unit.) I think the Nurses here are so knowledgeable and so nice. The nurses really listen to me, believe what I say and pass it on to the Dr.'s. If I ask for something they make sure it gets done immediately. Nurses she has had previously will stop by and say hi and see how Ellie is doing. They try and remember my name and are good at remembering to call Ellie, "Ellie"...instead of Eleanor (indicating to me that they know her).
Sunday, October 6, 2013
Surgery in the morning
Surgery in the morning at 11 AM. Neurosurgery will be there (they are the ones who do baclofen pump surgery) and orthopedic surgery will be there also.
I am saddened and a little scared because I have never met the orthopedic surgery Dr. Our old Dr. (Dr. Klatt) was our favorite Dr. and he moved to Colorado. So it will be the new Dr. that took his place (Dr. Hefflin).
I am still uncertain what neurosurgery plans to do. I am assuming pull out the baclofen pump and tubing. But neurosurgery has not checked back in with me to tell me the specific plan.
Orthopedic surgery does not want to remove the rods. They said they will look in the incision that Neurosurgery makes and see if the infection continues up her back. If they have to they will make a larger incision. But if they don't have to they are not going to open her up any more than they have to. If they see infection they will clean it out, but if they can't see anything they will just treat it with antibiotics.
I am fairly certain we will be going home with a PICC line and several months of antibiotics again. I really thought we were through with this whole spine infection thing.
If they remove the baclofen pump it will also mean taking oral baclofen (by g-tube) and risking her developing worse contractures than she already has.
I am saddened and a little scared because I have never met the orthopedic surgery Dr. Our old Dr. (Dr. Klatt) was our favorite Dr. and he moved to Colorado. So it will be the new Dr. that took his place (Dr. Hefflin).
I am still uncertain what neurosurgery plans to do. I am assuming pull out the baclofen pump and tubing. But neurosurgery has not checked back in with me to tell me the specific plan.
Orthopedic surgery does not want to remove the rods. They said they will look in the incision that Neurosurgery makes and see if the infection continues up her back. If they have to they will make a larger incision. But if they don't have to they are not going to open her up any more than they have to. If they see infection they will clean it out, but if they can't see anything they will just treat it with antibiotics.
I am fairly certain we will be going home with a PICC line and several months of antibiotics again. I really thought we were through with this whole spine infection thing.
If they remove the baclofen pump it will also mean taking oral baclofen (by g-tube) and risking her developing worse contractures than she already has.
Spa day
This morning Ellie and I put curlers in and painted our fingernails. She was feeling pretty good this morning, but is not feeling very good this afternoon. She is sleepy and has had some slight pain.
Good news...Bad news
I had good news this morning with her VRP being down. But then we got some not-so-good news this afternoon.
When they did the ultrasound they found some fluid along her baclofen pump tubing. It is more than likely infection. Neurosurgery is deciding what to do now. They have her off of any food (prepping her for surgery).
I am assuming that they will remove the baclofen pump and tubing and clean out any infection. Then at a later date they would have to do another surgery to replace the baclofen pump.
I do not know if this stems from the spine infection last year...I am assuming so.
I have been contemplating today if I would choose to do the spine surgery again because it was a big recovery, then got infected, then 6 months of antibiotics, and more than likely it is what caused her to no urinate on her own anymore, and now if this is related another infection and another surgery and more antibiotics. I think I still would as crazy as that sounds. I really like no putting a back brace on her everytime I want her to sit up, it also fused her spine so she won't grow taller, it is easier to get her dressed and move her around (she is not quite the sack of potatoes that she was before.)
When they did the ultrasound they found some fluid along her baclofen pump tubing. It is more than likely infection. Neurosurgery is deciding what to do now. They have her off of any food (prepping her for surgery).
I am assuming that they will remove the baclofen pump and tubing and clean out any infection. Then at a later date they would have to do another surgery to replace the baclofen pump.
I do not know if this stems from the spine infection last year...I am assuming so.
I have been contemplating today if I would choose to do the spine surgery again because it was a big recovery, then got infected, then 6 months of antibiotics, and more than likely it is what caused her to no urinate on her own anymore, and now if this is related another infection and another surgery and more antibiotics. I think I still would as crazy as that sounds. I really like no putting a back brace on her everytime I want her to sit up, it also fused her spine so she won't grow taller, it is easier to get her dressed and move her around (she is not quite the sack of potatoes that she was before.)
VRP is down
They switched her antibiotic last night and finally her VRP is down. It went from 21 yesterday morning to 8 this morning. Hooray! These were the results they were looking for all along.
So although they still don't know what infection they are fighting or where it is in the body the test results are vastly improved!
Finally a step in the right direction!
My guess is they won't find anything on ultrasound, it just doesn't give as clear of a picture as the MRI. But then I'm guessing that they will still think she has a spine infection and will want to treat her with antibiotics for an extended period of time (at home).
So although they still don't know what infection they are fighting or where it is in the body the test results are vastly improved!
Finally a step in the right direction!
My guess is they won't find anything on ultrasound, it just doesn't give as clear of a picture as the MRI. But then I'm guessing that they will still think she has a spine infection and will want to treat her with antibiotics for an extended period of time (at home).
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