We are back up at Swedish for another 24 hour EEG. The Dr's are monitoring Jaylie to see if she is still having seizures form IS (Infantile Spasms). Jaylie has been doing this little shaking thing sometimes, and with the Dr's having to cut the dose of ACTH several days before the Dr's were planning to, the Dr's are concerned Jaylie did not get enough ACTH soon enough to completely stop the IS. So the Dr's have decided to do a 24 hour EEG watching Jaylie to see if there is anymore seizure activity going on.
Depending on how today's EEG goes will determine if we need to change our IS treatment strategy or continue down the path we currently are on. Our current path is to wean Jaylie off the ACTH, meticulously watch for seizure activity and take a oral medication to help keep any seizure activity at bey.
Jaylie's blood pressure has gone down today, yay! The Dr said there is usually a two week lag in regards to ACTH affecting Jaylie's blood pressure. If I understood the Dr correctly, this two week lag would explain why Jaylie's blood pressure shot up all the sudden and also why it has taken some time for her daily blood pressure to come down. We have to be consistent in giving Jaylie her medication and over time (roughly 2 weeks after we stop the ACTH completely) these blood pressure issues should subside.
We started weaning Jaylie off the ACTH the tuesday before last. The weaning process invokes cutting the by 25% each week until we are at a low enough amount to completely stop. Right now we are on the second week of weaning. We have another week, or two or three more of weaning Jaylie off the ACTH before we can stop the ACTH all together.
Jaylie has gotten really swollen while on the ACTH. So much so people who don't know Jaylie think she is a boy because her face has gotten round and her jaw very square *sigh*.
Jaylie's swelling has started to come down but is still significant.
Jaylie is 16 lbs and 27 inches long now.
Jaylie will be 1 year old in less than 2 weeks - can you believe it!
As always, thank YOU so much for your prayers and support! They are a life saver for us! We really appreciate them all...
Nathan, Kristina and baby Jaylie
Here are a couple of pictures from today: