Today was a good, but disappointing day. Finally Dr Goins (pediatric neurologist) came in to consult on Griffin this afternoon. This is something we've been waiting for since he got really sick. The good news is that he discharged Griffin to home. He's finally back home and I'm not sure - I think I'm more anxious with him home. I don't have the bells, whistles, and monitors to look at 24/7 which is probably a good thing. He has an immature suck pattern so it's scary to feed him knowing he desat'd into the 70s while feeding at times.
The bad news - well, disappointing news - is that Dr Goins feels that Fin has to be on Phenobarbital for the next SIX MONTHS. He also commented that the MRI was concerning - stating that there perhaps will be permanent brain damage from the havoc the virus reeked on his brain. He wasn't anticipating anything grossly serious, but perhaps learning disabilities, hyperactivity, etc. I don't know exactly how I feel about this, as Dr Pelinka just spoke to a pediatric neurologist up at OHSU yesterday who stated (after listening to the MRI report, his history, and EEG report) that he'd be inclined to just tapering him off of the Pheno now with repeat EEG/MRI later. He also felt that the MRI report wasn't something to be "completely" concerned about at this time. I realize that the neuro at OHSU hasn't actually "seen" Fin yet and Dr Goins has, however still feel that there was "that" much of a conflicting opinion that it might be a good idea to reach for a 2nd opinion from a pediatric neurologist up there. We'll talk to Dr Pelinka about that tomorrow.
So far so good. At least I have my boys home. There just are more stairs to climb - but taking one at a time for now.
3 comments:
Your guardian angel's been watching out for your boys. :) Things'll be okay. Love you.
In the words of Scarlet O'Hara - think about it tomorrow. Try and relax with being home as the first few weeks are a hard adjustment. Make a plan about getting a second opinion. Once you know if there are any long term effects make a plan to get both you and Fin help when and where needed. As I have found out - getting help can take months of waiting on lists so be an advocate for yourselves. Okay getting off my soap box now ;-)Praying for you!
This must be such a tough time for you right now. Thinking of you lots and still praying.
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