Saturday, July 12, 2014

Tough Guy

Well, another month has passed since our last clinic appointment, so this week we headed in to the hospital for our now monthly blood work, echocardiogram, EKG, and meeting with our favorite transplant coordinator. It seems like we were just at the hospital last week for clinic since time has seemingly sped up since Max was born.

Apparently, this is a thing. 

In an event so rare that it could be classified as a true "phenomenon," we only had to wait about 15 minutes for the IV team to show up; the appointment was already off to a great start. Since blood counts have been so low, the nurses have to mask up, which, for once, seemed to be oddly comforting to Max. Perhaps this will bode well in the feature when he has to be the one to sport a trendy germ-guard.

They even come in "hipster!"

Even though Max is quite the trooper, blood draws are often pretty traumatizing for him. He has to be briefly taken away from his mom, put on a cold table, surrounded by barely familiar faces, held down, and poked. Today, however, Max decided that he was a big boy and that blood draws were no big thing. Every time he caught eyes with Em, Max smiled and even laughed a couple times. He shed the obligatory single tear with the initial poke, but otherwise there was no crying to be had. As an awesome side-effect of staying calm, he stopped bleeding almost instantly once the draw was complete. Fantastic.

The little guy is definitely growing up...


We made our way over to the clinic for the rest of the appointment. Other than seemingly pooping his brains out multiple times throughout the visit, the process was relatively painless.

Me after what seemed like the 17th diaper in the last 10 minutes. 

Max, as always, was a trooper for his what was likely the fastest echo we have ever had. The EKG was also completed on the first try, which NEVER happens. Other than having to wait around for a while--the heart center recently merged with another office, so things have been in a somewhat chaotic transition for the past month or so--the appointment was one of the best we have ever had. Our wonderful new nutritionist said that everything is looking great and Max is gaining weight in a very satisfactory fashion. He was 13.3 pounds this visit, which is over a pound up from last time! Very awesome indeed. Plus, this weight gain was as the direct result of using primarily unfortified feeds, which is something we never thought would happen.

Things are going well for the little man.

The next day, Max's physician called with the blood test results. Everything is looking great...except for those pesky white counts. However, there was a bit of positive increase. He is nowhere near the 5000 count we are all shooting for (which itself is the low side of average), but he has made some progress in the right direction. Not very much progress, but progress nonetheless. We will continue to hold a few of his medications for the next month, which is a trade-off we discussed in a previous post, so hopefully those number will continue to rise.

Pictured: Max's immune system. 

Out next visit will be slightly delayed until Max has his next heart catheter and biopsy next month. Even though we are not looking forward to Max having another surgical procedure, we will hopefully get the confirmation that there are absolutely no signs of rejection. Relatively, things have been going so well thus far, so we hope the trend continues.



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