Friday, March 21, 2014

Clinic Visits, Tube Freedom, and Photo Shoot Results

Hi, everyone!

It's been another busy week for us with Mr. Max! It's still wonderful to have him home (even when he decides we all need to be awake starting at 4am).

Max's health has been moving in exactly the direction we want it to. There are no signs of organ rejection at this time, his magnesium levels seem to have evened out, and we're able to start him on his other anti-rejection/immune suppressor medication that we'd had on hold while we got the magnesium under control.

Some of the best news we've had lately is . . . Max no longer has to use his NG tube! He's been doing so well with taking his food and medication orally that we were able to lose the tube. Max seems MUCH happier without it and I can't blame him--I'd feel so much better to not have something jammed up my nose all the time, too.

We also had some exciting news at the hospital this week. We've been going in a couple times a week for clinic visits where Max has his blood drawn for labs, the doctors give him a quick exam, he gets an echo or an EKG, and we discuss how he's doing with either the transplant coordinator or Max's transplant cardiologist. He's doing so well that instead of having to come in twice a week for clinic, we're being moved down to once a week. This is huge because we didn't think we'd be able to do that for several months, so this is a great sign that they think he's doing so well. Also, this keeps us from having to hang out in the waiting area for the blood draw station which, I'm pretty sure, attracts the sickest, most unclean people in the hospital outside of the ER.

This is a much nicer picture than one of a seventeen-year-old who doesn't cover his mouth when he coughs.
Or of sick children crawling around on the floor.
Of a hospital.

On an unrelated note, I wanted to follow up on one of our last posts when we talked about our impromptu photo session with some of Max's medical team. We received the photos yesterday . . . and Jon and I look about as homeless as we expected. We keep forgetting that we look fairly normal by Flagstaff standards but in Phoenix, you don't run across very many white dudes with dreads who aren't living in a bus station.

Of course, the doctors all look great and Max is, naturally, so cute it hurts. There were some cute moments in the photos like how Max's surgeon and his cardiologist seemed to keep trading off which one of them was smiling at Max. And then there were some funny moments like how towards the end of the photos, my smile got really strained and awkward and Jon's eyes were slowly closing bit by bit in each picture because he was so tired.

But there were some really great photos in there and hey, now we have our first family photo taken by a professional!

Next week, even though we're only down to one clinic visit, we'll be at the hospital a few times because Max is going to start his various therapy appointments (speech/feeding, occupational, and physical). We'll keep everyone posted but in the meantime, we're just enjoying our Max!

1 comment:

  1. Ya'll look wonderful and so does Mighty Max. I am proud for you.
    He is a handsome young fella!