I am suffering from sleep deprivation at the moment, so please bear with me if I ramble on too much. Ryan is connected to IV lines 24 hours a day. He even has to take a bath or shower with his IV pole in tow, and yesterday, there were issues with air getting into his line. About every 5-10 minutes the alarm on his pole would go off and someone would have to come in and try to get the bubbles out then reset the machine. If someone didn’t respond within a few minutes, the machine would increase in volume until it would be at and almost unbearable level. This went on until around 2:00 AM, when one of the nurses was able to resolve whatever the problem was.
The morning started off really rough for Ryan. He wasn’t hungry for breakfast, didn’t feel like drinking anything, was looking like he was going to throw up, and had an overall look of being miserable. He couldn’t even take his AM pills. The team thought, and I agreed, that his medications should be switched over to IV. We also discussed that he was probably done eating for awhile and would likely need to start total parenteral nutrition (TPN) via IV. However, they generally try to delay switching someone to TPN for as long as possible because it is very hard on the liver. Then, after requiring TPN for awhile, if things don’t improve, they will insert a feeding tube instead. We were able to dodge all of that for today, because around 1:30 Ryan bounced back and decided he wanted to eat and play. He managed to keep down everything he ate, but he didn’t want to eat anything for dinner and now he is feeling nauseous again.
Another side effect of transplant conditioning has started to kick in as well: “Roid Rage”. They are giving Ryan high dose steroids in an effort to prevent Graft Verses Host Disease (GVHD). GVHD can be chronic or acute and can be as minor as a slight temporary skin rash to permanent damage of major organs. It is a big concern and is watched for very closely. The problem with steroids is that children are generally much more sensitive to the side effects. In fact, they can act totally out of character to the point where they are extremely difficult to reason with, and it can seem that they have turned into a completely different person.
Ryan has definitely had moments of rage the last two days. Something as simple as him getting cold after his shower and thinking I am not drying him off fast enough can send him into a rage. He will yell at me, scrunch up his face and glare, then clench his fists down by his sides so tight that his upper body starts to shake. It is hard to see your child act like that, especially when it is most often direct hatefully at you. The good news is that the side effects go away once the steroids are stopped. The bad news is, that could be months in the future, depending on how things are going.
We also had a few visitors today. Grandma Terry and Grandma & Grandpa N. stopped by for awhile. Ryan didn’t feel good most of the time and was fairly anti-social. Then, later in the afternoon, a fellow transplant mom, Valancy, came to visit. Valancy’s son Julian had aplastic anemia and successfully received a bone marrow transplant here at Seattle Children’s a couple years ago. She also started a Seattle Children’s Hospital Guild called Julian’s Dinosaur Guild (http://www.juliansguild.org/), which is a 501(c)(3) research focused Guild with the mission of “making aplastic anemia extinct”.
In a round about way, I met Valancy through a Guild fundraising event last September. At the time, I was trying to get an appointment for Ryan with Dr. Akiko Shimamura, one of the leading bone marrow failure experts in the world. I learned that Dr. Shimamura was going to be speaking about the latest developments in aplastic anemia research at the Julian’s Dinosaur Guild fundraiser so I decided to attend. Not only did I get to meet Dr. Shimamura and was told that I could email her directly for help in getting Ryan an appointment, but I also unknowingly happened to sit at a table with one of Valancy’s friends, which led to us meeting. Ironically, Valancy had been following my blog about Ryan. Since then, she has been really encouraging to me and has been a great support in “showing me the ropes” with SCCA and Seattle Children’s. I am really grateful that she has generously shared her time with me and put me more at ease in realizing this process can be very successful.