Day +61
WBC 12.5
What a hard, hard day. It began with an EEG. They stuck a bunch of wires to Max's head with strong glue. The wires led to a computer which measured brain activity. The EEG showed that Max has been having continuous seizures. They took him down to MRI right away and ordered another anti-seizure med in addition to the one that was started last night. After his MRI they hooked him up to a continuous EEG which he will stay on throughout the night. The med worked well, but did not totally stop the seizures so he is now getting an Ativan drip which will hopefully do the trick. If it does not work, they will have to try more powerful medication, which will lead to him being intubated again. As the neurologist just said to us, they are trying desperately to prevent this from happening.
The MRI showed increased ventricles (as compared to his MRI in June) and less space for fluid. These are both signs that Max's hydrocephalus has become worse. What is very odd though, is that his head size has remained constant and his soft spot is still the same as well. Initially the neurologist thought Max may need a shunt, but the neurosurgeon came to talk to us and he was not convinced that it is his hydrocephalus. He ordered a lumbar puncture (spinal tap), which was done late this afternoon. The tap showed that his fluid pressure was good, in fact better than it was in July.
They sent cultures of the spinal fluid because another cause of all this may be meningitis. The chances of this are low, as Max has not had any fevers or shown any other signs of infection. The BMT docs have not totally ruled out CSA and steroids as the cause, however, the locality of the seizures in the brain are not consistent with a CSA reaction.
The results of Max's skin biopsy showed grade 2 GVHD. The BMT docs do not believe this result and are having the test run again.
Where does this leave us? We don't know, and neither do the doctors. We are very afraid that the seizures have been going on for a while, as we pointed out to them between intubations 2 and 3 that Max could not focus on anything and he seemed totally out of it. We are frustrated that an MRI was not done during his last intubation as we requested, because maybe this could have been detected earlier (if it had been taking place then). If Max has to be reintubated to fight the seizures we don't know what we are going to do. We have asked so much of him and we keep asking for more. His GVH is not under control, his lungs are unstable, and his brain is going haywire.
Despite all of this, we are still in a better situation than other families. A beautiful 13 year old girl named Jenny passed away last night. She was transplanted a little before Max for Fanconi Anemia. I saw her mother today and she is so devastated. You can visit her web site at www.jennyshields.com. They do not have a guest book.
Grandpa Chick has made arrangements to stay with us until Saturday so we can both be here.
-Margaret
What a hard, hard day. It began with an EEG. They stuck a bunch of wires to Max's head with strong glue. The wires led to a computer which measured brain activity. The EEG showed that Max has been having continuous seizures. They took him down to MRI right away and ordered another anti-seizure med in addition to the one that was started last night. After his MRI they hooked him up to a continuous EEG which he will stay on throughout the night. The med worked well, but did not totally stop the seizures so he is now getting an Ativan drip which will hopefully do the trick. If it does not work, they will have to try more powerful medication, which will lead to him being intubated again. As the neurologist just said to us, they are trying desperately to prevent this from happening.
The MRI showed increased ventricles (as compared to his MRI in June) and less space for fluid. These are both signs that Max's hydrocephalus has become worse. What is very odd though, is that his head size has remained constant and his soft spot is still the same as well. Initially the neurologist thought Max may need a shunt, but the neurosurgeon came to talk to us and he was not convinced that it is his hydrocephalus. He ordered a lumbar puncture (spinal tap), which was done late this afternoon. The tap showed that his fluid pressure was good, in fact better than it was in July.
They sent cultures of the spinal fluid because another cause of all this may be meningitis. The chances of this are low, as Max has not had any fevers or shown any other signs of infection. The BMT docs have not totally ruled out CSA and steroids as the cause, however, the locality of the seizures in the brain are not consistent with a CSA reaction.
The results of Max's skin biopsy showed grade 2 GVHD. The BMT docs do not believe this result and are having the test run again.
Where does this leave us? We don't know, and neither do the doctors. We are very afraid that the seizures have been going on for a while, as we pointed out to them between intubations 2 and 3 that Max could not focus on anything and he seemed totally out of it. We are frustrated that an MRI was not done during his last intubation as we requested, because maybe this could have been detected earlier (if it had been taking place then). If Max has to be reintubated to fight the seizures we don't know what we are going to do. We have asked so much of him and we keep asking for more. His GVH is not under control, his lungs are unstable, and his brain is going haywire.
Despite all of this, we are still in a better situation than other families. A beautiful 13 year old girl named Jenny passed away last night. She was transplanted a little before Max for Fanconi Anemia. I saw her mother today and she is so devastated. You can visit her web site at www.jennyshields.com. They do not have a guest book.
Grandpa Chick has made arrangements to stay with us until Saturday so we can both be here.
-Margaret
posted by Mike Ciacciarelli
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