Day 3 brought exactly what we thought it would. The CT that she had Thursday night did not show any signs of bone infection which is good news. She had another spinal tap yesterday (Friday) morning which showed the white cells in her CSF down from 900 where it was when she had her first one last week to 30.
The infectious disease doctors were looking for this number so that they could determine how long a course of antibiotics she would need. They have come up with 3 weeks from 1/13 (the date she last had a fever). So she will be on the IV antibiotics until February 3rd or 4th. Luckily, we can do this from HOME so it isn't nearly as troublesome.
Long term, if she gets any meningitis-like symptoms they will want her to be treated very carefully and will want to look further at surgical intervention. Most importantly, they do not want her to be given any antibiotics until AFTER a spinal tap is done. They were somewhat frustrated by the inability to identify what the specific bacteria growing was as she had already been on 48 hours of antibiotics before the spinal tap was done here at home.
Cam is feeling much better than she was a few weeks ago and is ready for the big party tonight. Her sisters are really glad to have her home and she is happy to be able to play with them again and from home!
Thank you all for your thoughts, prayers and support this time around. Hopefully, we won't need to ask for them again any time soon...
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
Saturday, January 23, 2010
Thursday, January 21, 2010
Round 2 - Day 2
Cam continues to feel great which is wonderful news. Yesterday, we saw all of the teams that we expected to see.
Infectious Disease didn't seem all that concerned given the way she was acting but was said that they would have been happier to know if it was the same bacteria as last time or not. They are now working on a treatment plan for Cam which will most likely involve several WEEKS of antibiotics via her PICC.
Neuro-Oncology was also in and from a cancer standpoint, she looks great. They didn't have any concerns with the scans that we brought with us.
Neuro-Surgery was in and the doctor that we saw was somewhat on the fence as to how they would handle her. One option he mentioned was what amounts to exploratory brain surgery - take out anything foreign that is in there, irrigate the area, maybe not putting the piece of skull back in...YIKES!!! We are not prepared to let them go in and pick at her head until they have no other options left on the table and it appears that they are on the same page. He was just laying all of the options out there.
This morning, they started talking discharge orders so we are hopeful that we will be out of here by this weekend!!! They still need to decide on length of treatment and what to do long term for her. Again, this will most likely mean close coordination between her primary care doctor, the oncology team at home, the ID team at home as well as the oncology and ID teams here in Boston. Anytime that Cam gets anything, they will have to agree on an approach since clearly she lives to make their lives complicated! Her long term follow up brain tumor care will still be done here but they think that it is important that EVERYONE be kept up to speed to make sure that the coordination of care is top notch - can't argue with that logic...
The rest of today, we will wait and see and keep our fingers crossed that they get the home health situation worked out and get us out of here in the AM...shhhhhhh......don't say it too much or it won't happen...
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
Infectious Disease didn't seem all that concerned given the way she was acting but was said that they would have been happier to know if it was the same bacteria as last time or not. They are now working on a treatment plan for Cam which will most likely involve several WEEKS of antibiotics via her PICC.
Neuro-Oncology was also in and from a cancer standpoint, she looks great. They didn't have any concerns with the scans that we brought with us.
Neuro-Surgery was in and the doctor that we saw was somewhat on the fence as to how they would handle her. One option he mentioned was what amounts to exploratory brain surgery - take out anything foreign that is in there, irrigate the area, maybe not putting the piece of skull back in...YIKES!!! We are not prepared to let them go in and pick at her head until they have no other options left on the table and it appears that they are on the same page. He was just laying all of the options out there.
This morning, they started talking discharge orders so we are hopeful that we will be out of here by this weekend!!! They still need to decide on length of treatment and what to do long term for her. Again, this will most likely mean close coordination between her primary care doctor, the oncology team at home, the ID team at home as well as the oncology and ID teams here in Boston. Anytime that Cam gets anything, they will have to agree on an approach since clearly she lives to make their lives complicated! Her long term follow up brain tumor care will still be done here but they think that it is important that EVERYONE be kept up to speed to make sure that the coordination of care is top notch - can't argue with that logic...
The rest of today, we will wait and see and keep our fingers crossed that they get the home health situation worked out and get us out of here in the AM...shhhhhhh......don't say it too much or it won't happen...
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
Wednesday, January 20, 2010
Childrens Hospital Boston - Round 2 - Day 1
After a delightful stay at Morristown Memorial we were finally sprung yesterday morning at 10 for our drive to Boston.
We arrived late afternoon and were admitted via the Emergency Room. It was actually quite comical to watch Cam skipping down the hallways and giggling while as they prepared to admit her to a room upstairs. We saw her neuro-oncologist yesterday in the ER and she was pleased to see Cam looking as good as she is. In fact, all of the doctors that came in were quite shocked when they compared what the chart said was her diagnosis to her demeanor and we are quite pleased to confusing them this way for once.
She was admitted to a private room since she is on precautions due to the meningitis - which is nice! Though it does have its disadvantages as she won't be allowed out to the play room. Oh well...we are hoping that the stay isn't so long that it becomes an issue.
This morning we are waiting to see the Infectious Disease doctors as well as the neuro-surgery team. Dr.Lee (the neuro-oncology attending) also mentioned that they are going to put her films up during the oncology/radiology/neuro-surgery "conference" so that everyone can weigh in on her - unbelieveable how many people are looking at this now.
No doubt, we will be out of here in no time. In fact, last night Cam was ready to "bust out of this joint...." - maybe a little too optimistic.
With Love,
Greg, Robin, Caitlin, Caroline and Campbell
We arrived late afternoon and were admitted via the Emergency Room. It was actually quite comical to watch Cam skipping down the hallways and giggling while as they prepared to admit her to a room upstairs. We saw her neuro-oncologist yesterday in the ER and she was pleased to see Cam looking as good as she is. In fact, all of the doctors that came in were quite shocked when they compared what the chart said was her diagnosis to her demeanor and we are quite pleased to confusing them this way for once.
She was admitted to a private room since she is on precautions due to the meningitis - which is nice! Though it does have its disadvantages as she won't be allowed out to the play room. Oh well...we are hoping that the stay isn't so long that it becomes an issue.
This morning we are waiting to see the Infectious Disease doctors as well as the neuro-surgery team. Dr.Lee (the neuro-oncology attending) also mentioned that they are going to put her films up during the oncology/radiology/neuro-surgery "conference" so that everyone can weigh in on her - unbelieveable how many people are looking at this now.
No doubt, we will be out of here in no time. In fact, last night Cam was ready to "bust out of this joint...." - maybe a little too optimistic.
With Love,
Greg, Robin, Caitlin, Caroline and Campbell
Thursday, January 14, 2010
Update - 1/14
OK...Cam is back in the hospital. On Monday morning, Cam woke up throwing up and then started complaining about her neck hurting. Of course, our first inclination was to call the pediatrician for what we thought would be a quick visit to make sure everything was normal. Of course, we were wrong...
Cam was admitted back into Morristown Memorial via the ER on Monday afternoon and diagnosed with meningitis...AGAIN..or STILL...?
She had a CT scan on Monday afternoon followed by an MRI which showed no cancer which is good. However, the spinal tap that followed on Wednesday showed white cells so she is back on IV antibiotics and is scheduled to have a PIC line (the return of SUPERTUBE!!!!) put back in on Friday morning.
We will most likely be heading back to Boston on Tuesday to meet with the doctors there (neuro-oncology, neurosurgery, neurology) to get their take on the situation. The thought is that perhaps the fluid pocket that developed post surgery is the source of the infection. Unfortunately, at this point, we just don't know and we need more people weighing in on the situation...
At this point, Cam is feeling good, which is nice. We will wait and see what the next few days bring, if anything and keep our fingers crossed that it all works out.
Boston is lovely this time of year, right...?
With Love,
Greg, Robin, Caitlin, Caroline & Cam
Cam was admitted back into Morristown Memorial via the ER on Monday afternoon and diagnosed with meningitis...AGAIN..or STILL...?
She had a CT scan on Monday afternoon followed by an MRI which showed no cancer which is good. However, the spinal tap that followed on Wednesday showed white cells so she is back on IV antibiotics and is scheduled to have a PIC line (the return of SUPERTUBE!!!!) put back in on Friday morning.
We will most likely be heading back to Boston on Tuesday to meet with the doctors there (neuro-oncology, neurosurgery, neurology) to get their take on the situation. The thought is that perhaps the fluid pocket that developed post surgery is the source of the infection. Unfortunately, at this point, we just don't know and we need more people weighing in on the situation...
At this point, Cam is feeling good, which is nice. We will wait and see what the next few days bring, if anything and keep our fingers crossed that it all works out.
Boston is lovely this time of year, right...?
With Love,
Greg, Robin, Caitlin, Caroline & Cam
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