After nearly five months of fairly stagnant sailing-which in our case is the best type of sailing-we hit a few hiccups yesterday. Starting late last nigh (early this morning) we noticed that Max felt a little hotter than usual and decided to take his temperature. He was running higher than usual, but it wasn't quite to a level of concern and his demeanor seemed fairly normal albeit tired. After about 45 minutes, we decided to check again and noticed that he did have a slight fever and his temperature had jumped up a full degree in less than an hour.
Time to call the doctor team.
Since the heart center recently put a new phone tree in place, we decided to try and use that in an attempt to get ahold of someone. After 20 minutes, we finally go through to someone who was on call. Unfortunately, it was not someone familiar with Max so we had to go through a bit of patient history and that individual had to attempt to get ahold of someone from the transplant team to decide what the best course of action was. During this time, Max's temperature continued to rise and he began to develop a rash along his chest and up towards his neck. Luckily, the doctor on call was the head of the transplant program and one of our favorite physicians. Since Max had no other symptoms and going to the ER is a last resort (seriously, we may treat the fever there but the likelihood of Max being exposed to something even worse is incredibly high), we decided to give Max a fever reducer and ride out the rest of the night at home and come in to the clinic in the morning. It was 3:45am at this point, so that wasn't too much longer to wait.
Fast forward four sleepless hours to the morning. Max still seemed a little off and was consistently hot to the touch. We took his temperature and at this point it was above 100.4, the magic number, so it was time to go see the doctors. Of course our pediatrician, who is very good but also very popular, wasn't able to even be at the hospital today. And, Thursday being clinic day at the hospital as well, all of the transplant team is incredibly busy. Fortunately, we were able to get in to see the entire team-would have been nice under different circumstances-and go from there. Max was still running a fever at the hospital and his throat was a little red, so they decided it was best to run a full blood workup to see what is going on.
And that is where we are at. We are finally home to wait and watch to see if anything changes and wait for test results. At this point, there could be a slew of things. Best case scenario, Max is having a severe reaction to the beginning of teething. Other options are that he was exposed to some type of viral infection-which is unlikely because none of us have any significant expose to ANYONE, seriously, NO ONE-or he could have a a bacterial infection. Since we had to stop a medication that was lowering Max's blood counts that specifically targets a respiratory infection known as CMV, Max could be developing that seeing as how he tested negative at birth but his organ donor was positive. And finally, this could be a sign of organ rejection. Unfortunately, all of these conditions have the exact same symptoms, so it can be very difficult to discern the root cause. The worst case scenario is unlikely, but it is always looming over every cough, sniffle, and fever.
Even though we often keep our cool and do the best to stay positive and bring humor into every stressful situation, being a heart parent f*&king sucks. It does. There is no other way to put it. It is no walk in the park; it is the MOST difficult thing I could ever imagine and makes everything else seem like a cakewalk. Not only are we new parents, wherein each time a healthy kid gets sick is devastatingly terrifying, we are first-time parents to a child with a heart transplant. A child with extremely low blood counts where a common cold could put him in the hospital. Hopefully, Max is just teething, but with a transplant kid you never know. Nothing is ever certain and you can never take anything for granted. Every symptom is worrisome and every change in his behavior, bodily functions, and vitals is significant and extremely stressful.
We will continue to monitor and update as we find out more and progress over the next couple days. For now, though, we are home, decently happy, and hopefully taking a much-needed nap.
We also ask if you could keep some friends of ours in your thoughts. Their daughter is a few days younger than Max and was in the CVICU at the same time. She has had a rough week so if you could send them a positive vibe as well that would be much appreciated.
As always, thank you to everyone for the genuine concern, love, and support. We couldn't make it through this fully alone.