Saturday, May 10, 2014

Three Months Post-Transplant!

The theme for the first part of our week was "waiting." On Monday morning, we went in to have Max's blood drawn so his doctors could check the levels of his anti-rejection/immune suppressor meds, his blood counts, his magnesium levels, and a few other things. We arrived in the morning as instructed and then we waited . . . and waited . . . and waited . . .

Max aged a bit while waiting.

We have to wait for the IV team since Max's best vein for blood draws is on his scalp and we're not sure what happened. We think that maybe there was an emergency in house but after three hours of waiting, I walked over to the heart clinic to talk to our transplant coordinator. She told us that it was now too late to get the medication level and we'd have to try again the next day. She was definitely NOT happy that the IV team kept us waiting for so long with no word--they even stopped taking calls because we had the lab draw station and the heart clinic both page them to try and get an ETA.

On the plus side, since we had to wait for so long, we ended up seeing almost all of Max's transplant team as they passed by. We were particularly glad to see Max's surgeon since we hadn't seen him in about a month. It was great to see him and he couldn't believe how big Max is getting and how good he looks.


We went back to the hospital and Tuesday and started to wait for the IV team again. We figured it would be at least an hour before we saw anyone but we were in and out of the hospital in 20 minutes. I have a feeling that someone gave the IV team a talking to . . . or we just got lucky and got them during a slow time.

It was probably the other one.
Wednesday was a day off from the hospital and then we were back in on Thursday for a physical therapy appointment. Max is doing so well--and his left shoulder isn't tight anymore! He and I have been working a lot to try and loosen it so Jon and I were thrilled when the therapist told us that she couldn't feel a difference between the left and the right shoulders. Max continued to impress the therapist with his head-holding-up skills and overall she said he looks fantastic.


Just before our PT appointment, we ran into some familiar faces. If you've been following the blog for a bit, some of you might remember back in February when Max had his scary run of SVT. The baby a couple doors down was also having a rough day and we asked everyone to keep that baby, Rylee, and her family in your thoughts. We ran into them today and she is doing great! She looks wonderful and it was really nice to see her and her mom.

There's a kind of solidarity among families in the CV ICU or the NICU. It's a club you never wanted to join but the support you can receive from each other is really helpful. Especially when they can help you to have a sense of humor about everything that's going on by sharing this on Facebook:

Oh my god, my life.
Especially the last panel.

Max's blood counts are the same so we're still hanging out at home. Between Max's adorable face and yoga, we're managing to stave off cabin fever.

But now I have new problems.

Tomorrow is Mother's Day and I'm so happy to be able to celebrate at home with Jon and Max. Yeah, we're under house arrest, but I'm so thankful that we have Max here and he's home with us.


Max is now three months post-transplant which is amazing! That was our next big milestone and because he's made it this far, he's now much more likely to make it to six months post-transplant. He's continuing to exceed expectations and I couldn't be prouder to be his mom.

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