Wednesday, April 1, 2009

Another night

I got home tonight picked up Em, and rushed to the hospital. I ended up getting back home late tonight because I was waiting for the doctor to come in to talk with us. I am afraid he didn't show up while I was there, and I was very sad. Emily was with me and I knew she needed to get home to go to sleep. When it was time to go I looked at Jude small and fragile in his little bed, and tears started falling. I didn't want to leave him tonight. Mike was reassuring, and I knew I needed to be strong for Em. I explained to Emily that if Jude was still in the hospital on Friday I would be staying with him. She didn't like that very much, but she understood.

Mike called when I got home, and told me the doctor had just been in. He said they are lowering Jude's depakote from 250mg a day to 100mg a day. They will also be giving it in liquid form vs sprinkles. The doctor still thinks we found our seizure miracle drug with the depakote, but it's obvious the medication is to high for him. Jude only ate a few ounces today, and around six he threw up again, and this time violently. Mike, and the nurse bathed him so he smelled wonderful when I got him. I held him close talking to him, and then lay him in his "nest" they build him in his bed. He looks very cozy in his little nest, and I am sure that contributes to his endless sleep. Jude just will not wake up to eat, and when he does he doesn't seemed interested in food at all. The good news is his blood levels are perfect, his vitals are fine, and his swallow test was perfect. So the doctor believes that the change in medication will allow us to have our Jude back. He is hoping he can go home by tomorrow. The doctor did make reference that Jude's eeg looks improved. He said "It's not normal, but improved although I can see the schizencephaly from the right side now". I have NO idea what that means so if you do please comment.

Tonight Mike was pretty upset, and worn out. He said when Jude threw up he just felt hopeless, and like he just couldn't do this anymore. He knows he will though, but occasionally we do feel broken. I reassured Mike that it's perfectly normal to feel like you want to give up, but we have to be strong. I truly miss Mike being here with me at home, and I think we realize now how much we lean on each other through this. Sometimes I think we both feel so lost and trapped in our stress, but always find our way back to each other.

So some good news today is Jude's additional insurance came through. I just received another HUGE bill from Jude's last hospital stay so it's so reassuring that we won't receive any additional ones. This is wonderful news for us.


Patti said...

You and Mike are angels. Judd is so lucky to have you as his parents. Prayers are going out for you.

Bird said...

The hospital stays are the worst and I can say from experience that I just broke down and cried the last time we were in one and it's just from the stress of making it work and being separated and all that. Good news is that if you can survive the hospital then you can probably survive anything.

I'm glad Depakote is helping Jude so much. I'm guess that the doc is saying that Jude's hypsarrhythmia has subsided and now he can just see the "normal" pattern of Jude's brain--including the defects. I could be wrong, though, so don't quote me on that. When we finally got Charlie seizures to go away he still didn't have a normal EEG and honestly I don't know if we ever will--he's got hardware in his head for crying out loud.

Anyway, fingers crossed that the med change will help Jude!

jocalyn said...

Hey! He probably means they can see the abnormality in the right side of the brain, but the seizure activity has subsided! That is huge! We've been told by every Dr. that due to Kendall's cysts she will never have a normal EEG. That's why we knew something was wrong even before her MRI...even though she wasn't having seizures at that point. So glad things are looking up. That is a relief!

Bronx Cataldo's said...

Congrats on the other insurance. It will be such a relief on the pocket. I know just got a lab bill for Finny 2873.51 and my out of pocket was 502.57 thankfully for the other insurance I owe 0.
Great to see that the medication is working.