Boston Update- Tuesday: just received a call that today will be Bostons last day in the CICU. So many mixed emotions! So happy, so proud , so excited yet so terrified to leave a team of people who has never given up. Always kept us informed. Never once led us to believe things were prettier than what they were. Family is what they now are. Todays changes-- theyve moved his feeding tube from his intestines to his stomach. So now we can see how his tummy is going to tolerate feeds in prep for bottle/breast feeds. Once he goes to HKU (heart and kidney unit) tomorrow, they will continue to work with speech to see just what our feeding future holds. Sweet boy hasnt had milk in his actually tummy for months. It will be a big adjustment regardless. Cycler will be started today. And he is doing well on the 6 hours off of dialysis a day. Hes still not peeing enough so we still pray for that. Other than that we just continue to cruise at his pace. If all goes well in the next couple of weeks.... I get to start mommy boot camp to bring that baby back where he belongs!! Till then, I start mommy boot camp here... Cleaning, de germing as much as possible, and just getting all other appointments out of the way for when I need to make his room my 2nd home for week or so! He is faithful. So faithful. đ
Posted on: Tue, 13 Jan 2015 17:37:12 +0000
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