Wednesday, February 26, 2014

Learn All the Things!

We apologize for the lack of updates over the last few days, things have been so busy for us! Max is doing extremely well and the medical staff is looking at discharging him soon. Initially, there had been talk of sending him home tomorrow but unfortunately, we have one final issue before he's able to go home. One of his medications can cause his body to lose most if not all of its magnesium and we need his magnesium levels to be steady before he can go home. This isn't really a big surprise to us since his main doctor called it from the beginning that the magnesium was most likely going to be what keeps him at the hospital. And really, of all the issues he could have that are delaying his homecoming, we'd rather it be something relatively minor like his magnesium levels as opposed to, say, his lungs collapsing again.

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.

Pretty much.
The nurse ended up putting the tube in herself and Jon and I were both left a little gun shy at the prospect of putting the NG tube in ourselves. Yesterday, however, Max decided we needed some practice and he pulled the NG tube out of his nose (which is exactly why we need to know how to put it in). We had a much more supportive nurse this time and I was able to get it on the first try.

This is meant for me.
I'll try not to hurt my arm patting myself on the back.
We've been able to do the bulk of Max's care in terms of administering his meds, bathing him, changing his diaper, etc. (under nurse supervision of course) which is nice because we've been able to basically practice everything we'll need to do at home. In between all that, we also get to spend a lot of time holding him and playing with him.

Seriously. This face. I can't handle how cute he is.
Today Max also had to do something called a car seat test which means he had to sit in his car seat for 90 minutes and then we'd see how his stats looked. We figured that since he loved the bouncy seat that'd be an easy transition to the car seat, right?


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 :-)

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