Hi everybody, we had an eventful last few days and just returned from the hospital late last night. On Thursday morning, JP came down with a rash and low grade fever and his fontanelle (the baby soft spot on the top of the head) was bulging. Both Cortney and I knew this was not normal, and we took him to the ER. After spending 12 hours in the ER, we were finally admitted for the night and stayed another 24 hours or so.
What was found was that little JP's CSF (cerebrospinalfluid) was too highly pressurized, causing his fontanelle to bulge. He doesn't have an infection, and an MRI on his head was clear of any problems, so at this point they are chalking the pressure up to a likely virus which may be causing the rash also. At this point the pressure in his CSF is stable and not affecting his eyes or causing other problems. If at any time the pressure worsens more and starts to affect his vision or cause problems, he will likely get a shunt placed in his head, which is a small tube put in his head that drains extra fluid down into his stomach. Again, this is only if his CSF pressure worsens...for now, if it remains stable or gets better, he won't get the shunt. We just have to wait and see and watch him closely over the next several days.
It is totally unknown if this new problem is related to his seizures (he's still not having any seizures at all). After talking to multiple specialists over the last few days, one thing that is clear is that nobody knows the relation between this new issue and his seizures, or his medications, etc. We are certainly in a bit of grey area in that regard. We are meeting with one of the only pediatric neurosurgeons in the Sacramento area this Thursday to discuss the shunt possibilities should that become necessary.
Little JP, since he stopped the steroids, has been coming back to a normal little baby (aside from his fat little cheeks)!! He's smiling, even cooing at us, loves to smile and touch his mom and dad's face, and generally seems much more comfortable. He's a wonderful little guy and we just love getting to know him better again...
Love to all, and thank you for the continued notes and calls of encouragement and love! We certainly appreciate it very much!
Love,
The Seivane Clan
