|I Googled "happy lungs" and this is what happened.|
His new tentative release date is Monday but in the meantime, our transplant coordinator has been moving forward as if he were still being released on Thursday in terms of teaching us about all the transplant education we need to know for Max's care. We've also been meeting with a ton of different specialists who have been laying out each of their plans for Max, such as a nutritionist, physical therapist, etc. It's a lot of information but I think we're doing pretty well so far.
Initially I thought learning about all 14 of his daily medications would be daunting but so far, that's been fairly easy since we've been so involved with his care and sitting in on morning and evening rounds. What was daunting, however, was learning how to put in Max's NG tube which is the tube that goes in his nose and down to his stomach for his meds and feeds. Jon tried first the other night and it was a traumatic experience for everyone. We didn't like our nurse that night and she wasn't very helpful and kept snapping at Jon and giving unclear instructions. Max was screaming, I was crying because Max was screaming, and Jon felt so horrible about everything and everybody that he was on the verge of crying, too.
|This is meant for me.|
I'll try not to hurt my arm patting myself on the back.
|Seriously. This face. I can't handle how cute he is.|
His stats looked good throughout the test but he was GRUMPY. There were a couple factors that played into his mood but overall it was not a super pleasant experience except for the few times he managed to fall asleep. The nurse assured us that she was sure he'd do better in the actual car because of the vibrations and movement. At this point, I'm just hoping that his results are good enough to where he doesn't have to repeat the test.
Tomorrow is going to be another full day of learning. We've received a few machines to monitor his stats at home as well as a machine to feed him through his NG tube until he's able to feed orally so everyone is making sure we're up to speed on how to properly use them. Hopefully we won't have to use the machine for his feeds for too long though. He really needs to gain weight so we'll have to continue to fortify breast milk with formula like they do here so he can get the extra calories but the goal is to eventually move him over completely to breast feeding. He's been making impressive strides with bottle feeding according to the speech pathologist so we're hopeful that we'll be able to move him off the feeder sooner rather than later.
Thank you all for your continued love, prayers, and support! And thank you to those of you that have donated to his fundraiser. To everyone, we're overwhelmed by and appreciative of your love and generosity :-)