Wednesday, May 14, 2014

The Mighty Saga Continues

Max had his bi-monthly clinic visit on Monday where he had his usual set of labs, an echocardiogram, and a visit with his favorite transplant coordinator. Once again, we had to wait for hours for the IV team to draw Max's labs, but our doctors have had enough of this nonsense and are trying to find a solution to this problem, especially since the draw itself takes all of two minutes. Other than the inconvenience of waiting--and one would think at this point that we would be accustomed to this consistent proverbial hold, but alas it is continually draining--everything looked great! Max's heart is strongly pumping away, he is gaining weight (OVER 10 POUNDS!), and the biggest news of all, we have been upgraded to a monthly clinic visit.

This is huge news, but since he is over three months post-transplant and doing wonderfully, this is to be expected. We will still go in for weekly labs along with therapy appointments, pediatrician visits, and a follow-up next week with neurology regarding some concerns they had while Max was inpatient. Max's blood counts are continually low, albeit consistent. Since there have been relatively few changes to these levels throughout the last three weeks, it seems that his natural infant physiology coupled with immunosuppression are the culprits here rather than some acute attack or the side-effect of one of his other medications. Hopefully, over the next few months, those levels will begin to slowly rise and give us a little peace of mind. Until then, we remain vigilant and on pseudo house arrest for the foreseeable future.

Pictured: Reality. 

Since Max is doing so well and his last biopsy yielded incredible results, we are able to skip over the tentative three-month biopsy and go straight to the six-month. For many transplant patients, the team likes to go in every three months to check for early signs of rejection and to get an up close look at heart function. However, since Max's case is a bit different than others, we are able to change things up a bit. This means that hopefully Max will not have to have another surgical procedure until early August when he goes in for his next heart catheter. This is such a huge relief and will give the little man a lot of time before he has to have another inpatient procedure. If everything looks good in August, he likely will not have another biopsy until he is around a year old. Awesome.

Max continues to make huge gains and advances each week. Despite everything his has gone through, he is ahead of the curve for the majority of his physical milestones and you can almost watch him grow and age with each day. His progress in mind-blowing and we literally could not have hoped for better circumstances with all things considered. He is such an impressive human being and the fact that he has remained such a happy and easy-going baby speaks wonders to his strength and spirit. Honestly, we couldn't be luckier.

Max's new favorite toy is the wrapper that encases his medicinal oral swabs. It is a nice crinkly plastic, so it does make some pretty great noises. Move over expensive toys and hello, plastic wrap!

In other news, a few people have asked us exactly how much Max's stint in the hospital actually cost. Even though this is a question that is somewhat personal in nature, we don't mind giving a bit of insight into a situation that most have no experience with. We generally just gave a ballpark figure because there was really no way to justifiably answer this million-dollar question, but we can give a hint in the form of an insurance statement/bill. The image below is what 24 days in the CVICU will cost in terms of rent (this is just for his stay in the hospital, and nothing more):

To be fair, everyone warned us that kids were expensive...

Like we said, this was only for his stay post-transplant through discharge. Apparently, it is pretty pricey to be a miracle baby.

Until next time.

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