Sunday, August 17, 2008

Settling in

Sunday Night:
So here we are at the beginning of week three and Simon, Jaime, and I seem to be settling in here in bay 22 in the ICU Annex. Simon will have another echo tomorrow but we're not expecting to see anything different which is actually a good thing given that they're slowly weaning him from the Milrinone. The wean has also begun on the Heparin (blood thinner) with a subsequent substitution to the oral medication that we can take him home on. It's all good. It's not great but we're hanging on to the theory that every day that he's stable he's actually another day into his recovery.
Monday Morning:
So his echo cardiogram doesn't look any different but they weren't expecting it too (slow and steady, slow and steady). The big news though is that they're starting a more aggressive weaning of his two heart medications. The hope is that if he tolerates that, we can get rid of his PICC line by the end of the week!!! No more needles in his head!! They'll need to give him his Heparin via a subcutaneous line but that's tiny compared to the cyborg like set up he has right now.
The other crazy thing is that they're starting to let Jaime and I take over a lot of care so right now I have three syringes waiting beside me for when he wakes up that I will personally administer to him. Simon will be getting most of his meds orally right now and those are things that they encourage parents to be doing even before he leaves the hospital. It's funny to think that all of a sudden Shimmy's flavor experience is about to triple. He's going from knowing just what breastmilk tastes like to experiencing a minty flavor and couple of different fruity flavors. That's crazy. I guess he also knew what Symethicone tasted like but that was mostly just a sweet tasting gas-be-gone thing that we used to treat him with when he was super farty.
He's still nursing somewhat inconsistently throughout the day but better when he does in fact latch on. The little sucker nearly emptied my boob this morning and took his 75 ML's via his NG tube too. He's gaining weight a little slower than when he was on fortified breastmilk but still at a more than respectable rate. Yay for no bovine powder (for the time being at least- I can be happy with that and just fine if he needs it again).
Still no answer as to how this all started. They're closer to ruling out metabolic with just a test or two due to come back this week and the viral test results should also be back sometime in the next week or two. Dr Kate, when asked by my mom to say the most positive thing she could, said "I think we can be cautiously optimistic." Cautious feels right. I love thinking about Shimmy's first birthday party and his first steps and what type of pork product he'll enjoy the most (remember he doesn't need to be worried about a low fat diet :-) but I am also feeling very tender and raw about what we've been through and don't want to get blindsided by bad news. I want to be somewhat prepared. It's a delicate balancing act and while I'd much rather live in the place of birthday parties and first steps I feel a little need for the protective armor of the other side.
So, I think we're still here for a couple of weeks or more but the sun is breaking through the clouds.

Love to all

Laura

2 comments:

Polly said...

Ahh memories of the echo. Cedar had to be put under for each of his until this last one last year. he has to get one every 3-6 years to make sure he had no complications from Kawasaki's disease. yes like the motorcycle. They tried to get him drunk basically to put him to sleep. He became extremely affectionate, and wanted to take all his clothes off. he was only one, but now we will know what he will be like when he does get drunk. I'm feeling good vibes about your tyke. Take care. Polly

Mia said...

Oh, Laura, I started reading your blog from a yogamoms link and got WAY into it before I realized it was about the adorable little Simon from baby yoga. I'm so sorry you've had to go through this terrible ordeal and I send you all the love and strength in the world. I know Simon is in excellent hands - with the MDs at Children's and with such a strong and supportive family. We will see you back at baby yoga soon!
Health and strength,
Mia and baby Zeke