We had our first official meeting with the Infant ICU staff this afternoon. It was good to be able to voice our concerns regarding the not-so-very-good transition. The attending physician was in agreement with how horribly everything went down. At least they are aware and understanding of our concern. Before he can go home he will get another echo to evaluate his heart, have some more hearing studies, another echo to evaluate heart function, immunological workup because of absent thymus, and his 4-month vaccinations. The main thing for us to get him home is our parent training. We need to complete all the trach/g-tube check-offs, vent class (he will be coming home on a ventilator), vent check-offs, an 8 hour shift on our own, and a 24 hour shift on our own (John and I each must do these separately). The majority of his minor followups (neurology, genetics, urology, ophthamology, audiology, etc.) will be done at 6 months of age. The major followups (cardiology, developmental pediatrics, pulmonology, etc) will be done at least monthly from the time of discharge. We also need to get home supplies and home nursing lined up (hopefully 8 to 12 hours a day) and we will need to decide if our preference will be nighttime help or daytime help.
A good day overall, though. I got a lot of my MT work in, picked up the house, spent quality time with Emerson, made it to the hospital to meet with the docs, played with Malachi, did some trach training, came home to an even cleaner house (thanks, girls!), and enjoyed pizza and a movie with our home family. One day, our hospital family and our home family will just be our HOME FAMILY! One day... If Malachi behaves himself, it just a matter of getting all of our training in and getting comfortable with his new accessories. Four to six weeks!?!?!
Oh he is SOOOO cute! Praying that he will come home soon!
ReplyDeletelooking good he will do it i know
ReplyDeleteWhat great pics. Praying that it all happens quickly but in the right time. He is looking better and better in every set of pictures, Marissa!
ReplyDeleteYay! Great to see that handsome boy's face.
ReplyDeleteSo glad that you have a plan for getting home. I'm praying for Mr. Malachi and that he will be able to continute to take steps toward getting home. Although he doesn't know what home is, he will feel it when he gets there and I'm sure he'll do so much better outside of the hospital.
This all must seem so overwhelming right now... when my son was an infant other CHARGE families told me that the first year is the hardest and things get progressively easier with time. I doubted it at first, but it's true. All those appointments will begin to slow down and you'll settle into your own routines... your new "normal."
Sending lots of prayers and postive thoughts your way, for Malachi, your family, and your medical team.
He looks better and better everyday!! His color looks wonderful and I hope everything continues to go well and he is home soon.
ReplyDeletehugs,
Crystal and Eva