We listen to a lot of music in our hospital room. It calms us all, helps us set a more positive mood, and it makes the place feel a lot less institutional. Yesterday, we were listening to some internet radio, and a Florence and the Machine song, “Shake It Out,” came on. I hadn’t been paying much attention to it, but suddenly the refrain–an old proverb–caught me: ”It’s always darkest before the dawn.” For the past two days, I have found myself repeating this over and over in my head.
Surely dawn is on its way soon because the last two days have been pretty dark as we struggle through these most challenging times post-transplant. We are working hard to find a level of morphine that will keep Caemon’s pain at bay without sedating him too much, and we’re also facing the challenges of complications, which are to be expected. Caemon’s mucositis is just horrible. He has sores all over his mouth, in his throat, in his stomach, and all down his digestive tract. When his pain isn’t managed enough, he cries out, writhes around, does anything he can to find comfort. We talk him through it, work to distract him, and, of course, get him more pain medication as we can, but this is excruciating for all of us to see him constantly fighting pain.
Today, we reached a new low with this, in part as a result of Caemon’s slightly stubborn nature. Because he has discovered that it hurts so much to swallow, he has opted not to swallow anymore. We were told by some of the nurses that he might start drooling, which I thought would be fine, knowing it would be temporary and a good alternative to pain; however, Caemon refuses to drool too. He doesn’t yet know how to spit and won’t try. To make a very long story about my son’s oral habits short, Caemon is now sitting around all day with a mouthful of saliva. We tried to get him used to the suction device, even presenting it as a “teeny-tiny mouth vacuum,” but he wasn’t impressed. Therefore, the entire day he has been tight-lipped and unable to speak lest he leak a little or accidentally swallow. If you’re at all amused, it’s okay because frankly the boy’s stubbornness is quite cute when it isn’t causing him incredible discomfort. That said, I miss hearing him talk and laugh, and I just wish he would let us help him. We can only hope that his frustration with the situation will outweigh his stubbornness before long.
Our biggest concern today, however, revolved around Caemon exhibiting some signs of VOD (veno-occlusive disease), which occurs when some of the blood vessels in the liver are blocked such that blood cannot filter through the liver properly. It can be fairly mild or incredibly dangerous, so it is certainly something for which one needs to be frequently monitored. So far, most of Caemon’s liver levels have been pretty normal, but one level–his bilirubin–did rise both yesterday and today, and along with a slight jump in his weight, his doctors were concerned we might be headed into VOD territory. After an ultrasound for Caemon and a hefty dose of worrying and floor-pacing for me and Jodi, we finally learned that his liver is doing just what it should be doing, and while we will continue to watch every aspect of its function, for now, it is okay, Caemon is okay, and we are breathing again.
We were told so many times before we entered this world of BMT that it is very hard–hard on the patient and particularly hard on the parents. We were told we wouldn’t get much sleep, that there would be many ups and downs, that it would all be very challenging. The experience is certainly living up to those expectations. We are all tired, and Jodi and I miss our boy and his laughter and funny quips so much. We have to endure it all to make it to the other side of this though. The best we can do is hold on, and hope that before we know it, the sun will start inching up over the mountains.