Tuesday, April 22, 2014

Blood Count Update, PT, and a Baby Bunny

Happy (belated) Easter, everyone!


After a week of house arrest, we went in to the hospital yesterday for more blood draws to check Max's blood counts and various medicine levels. Luckily we didn't have an appointment after the lab draws and the IV team showed up very quickly. Instead of using the usual lab techs, Max has to use the IV team because he's so little and because they have to draw from the big vein on his head. However, the IV team has to take care of the inpatient orders first so we can end up waiting anywhere from fifteen minutes to two and a half hours--it all just depends on what's going on in the hospital that day. But like I said, we were able to get in and out within thirty minutes which was awesome.

We got some lab results back today and not only did our transplant coordinator up Max's anti-rejection/immune suppressor dosage, she said his blood counts are still low. She didn't go into a lot of detail at the time but she said she was planning on consulting with the hematologist to try and come up with a course of action before our clinic appointment next week.

Jon and I were pretty bummed out by that news. House arrest has to continue and we're worried about his levels. But we trust that the doctors will be able to come up with something. After all, they figured out a course of action to stop him from being a magnesium hostage when he was inpatient so I'm sure they'll figure out a solution.

Pictured: not our doctors.

This is also something that we kind of anticipated because of Max's age with the transplant. Because he's so little, he has much less of a chance of rejection because he doesn't have an established immune system to reject the foreign organ. However, this means that his risk of infection is higher. If he'd been older when he received his transplant, his risk of infection could be lower but his risk of rejection would be higher. It's a trade-off, much like with everything involving the transplant. As Jon mentioned in the last post, as a result of the transplant Max is at a much higher risk for certain cancers. However, as our transplant cardiologist put it, "yeah, Max will be at a higher risk for certain cancers, GI issues, and a whole mess of other problems but when you're holding him and he's got a heart with four chambers that beats the way it's supposed to, do you really care about any of that right now?"

We didn't have to think about that for very long.

On the bright side, Max had a physical therapy appointment today and he kicked ass. He's met all of the regular developmental milestones and he's doing incredibly well at holding up his head and strengthening his neck. The physical therapist was blown away by his progress and told us that she was extremely impressed with him.


His left shoulder is still a little tight but it's very much improved from the last time she saw him which is great. She also gave us a few more tips for things to do with Max to help keep his development moving forward.

We're done with appointments until next Wednesday for speech therapy and Thursday for clinic so we'll continue to lay low at home because of his blood counts. But we have some new physical therapy exercises to do with Max and then Jon and I have restarted our yoga practice so that should hopefully keep the cabin fever at bay.


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