9/10/18 - Discharge Planning

First, I did a speech therapy session. I ate a bunch of carrots again. They are delicious. MMM! Right after, my physical therapist came in. Good thing, too, because I was dozing off. She caught up with me just in time and we played a little while. I kicked the block that lights up. I reached my arms out and touched the lights, too. I am getting better at reaching while sitting now. That makes me proud that I figured it out. I am getting smarter and stronger. Everyone is very excited for me! I dozed off hard after playing in therapy. Snuggled up with Mommy for a long snooze.

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I am still doing good with my G (tummy) Feeds. I am up to 20ml/hr now! It’s the most I’ve ever gotten! No pukes so far! Yay! I will probably go home with a feeding pump that pumps the milk into my tummy continuously. I’ll use that for a while, until my tummy and gut is stronger. It’s a little weak still. When I can, I’ll get bolus feeds. Those are bigger amounts, a few times a day. Like a normal baby would get. I am still learning to eat, so hopefully I will be better and eating more by mouth then, too.

You may have noticed that I am back on the O2 nasal cannula. My blood oxygen stats have been a little (just a little) bit lower than where they should be, so the team decided to keep the Oxygen on for a while longer. We hope that I can wean off of it by the time I go home (possibly mid week next week is the talk now). If I can’t, then I will go home with Oxygen and wean off of it at home. So, we will see how it goes.

The transplant team met with Mom today, I ease dropped per usual. They are starting discharge planning! It’s crazy to think about!!?? They talked about rejection signs, keeping me safe from germs and sickness, my medicines, schedules and appointments and a bunch of other stuff today. Tomorrow will go more indepth. Tomorrow, I’ll tell you more about that stuff. Talk to you then. Night nite! -Heath

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