Monday, June 16, 2014

Low Blood Counts are the Bane of My Existence

Hi, everyone!

Last week we had a couple of appointments for Max. The first one was a well-baby visit with his pediatrician on Tuesday. We ended up running a few minutes late and when we got there, we were seen by one of the pediatricians main nurses. Max looked great and the pediatrician said based on his nurse's assessment that he didn't feel like he needed to actually see Max. His next appointment will be in a couple months after his six month biopsy and we'll hopefully be able to start getting Max some of his vaccinations.

A couple days later on Thursday we went in for Max's heart clinic appointment. The IV team was very quick at arriving to do his lab draws and we then headed to the heart clinic. Max is weighing in at about 12 lbs now which is awesome but Jon and I had both expected him to weight closer to 13. He's filling out a lot more now and he's starting to get little baby fat rolls around his wrists and what were skinny little frog legs are now finally filling out to chubby baby legs.

Max's EKG and echo both look excellent. His heart function is great and one of our cardiologists who reviewed the echo told us that his aortic arch and his pulmonary veins are growing, which is amazing news since they were kind of small due to Max's HLHS.

And then there are his blood counts . . . after two months of this, we're still dealing with Max's low blood counts. His doctors have decided to change up his medications in an effort to elevate his counts. We've stopped three of his medications that can have side effects of lowering his white counts and we'll be going in for weekly blood draws for the next month.

"That should just about do it. See you next week!"

One of our biggest concerns is that one of the medications we're stopping is Valganciclovir which is used to treat cytomegalovirus infections, or CMV for short. The tricky part about CMV is that while Max is negative for it, his heart donor was positive . . . which means that a viral infection could develop at any time. Because of the difference between Max and his heart, there's really not a whole lot we can do other than use medication to to prevent an infection. But the medication, the Valganciclovir, has a side effect of lowering his blood counts which brings us to the trade off: if he's on the Valganciclovir, it helps prevent CMV but it further lowers his already suppressed immunity which exposes him to everything else. By taking him off of Valganciclovir for a while, his blood counts will (HOPEFULLY) go up but he'll be at a greater risk for CMV.

The doctors also told us to pause CellCept, which is one of his anti-rejection medications. Jon and I think this might be the culprit because if we remember correctly, it was soon after we started CellCept that his blood counts dropped. Hopefully taking him off the CellCept will help but again, it's a trade off because without it, he's at a higher risk for organ rejection.

Pictured: Max's immune system.

Unfortunately, there isn't a whole lot we can do right now. We trust our doctors and we're modifying his medications as per their instructions and we just have to keep on being cautious and bathing in Purell.

Seriously, you should all buy stock.

I'm trying to keep my stress levels down but I can't help it--I'm worried about him. His blood counts have been low for two months and I feel so helpless because I can't do anything other than what we're doing. I try not to focus on that but it's hard not to.

Enough of the worry--on to the fun stuff!

You might remember that a while ago, Max rolled from his back to his front. Last Wednesday, Max rolled from front to back! Ever since then, it's like a switch flipped and now he does it all the time (although I'd prefer he not try to do it during diaper changes . . .) He's such a funny kid because that seems to be the way. He did the same thing with breastfeeding--he was only nursing a couple times a day and taking a bottle the rest of the time and then all of a sudden, one day he was like, "No, I love this! I've always loved this!"

Yesterday we celebrated Jon's first Father's Day and we're limited in what we can do because of his blood counts but I think Jon still had a good day.

We'll have lab draws on Wednesday so keep your fingers crossed for Max that his blood counts go up!

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