We're now at day 38 post transplant and entering week 8 in the hospital. So far, Avery's blood counts are pretty stable...low, but stable. He has needed two red cell transfusions since his transplant but no platelet transfusions, which is pretty amazing! All of his labs are showing that the new cells have engrafted and that the cells being produced are still 100% donor cells. He had about a two week period with a high viral count (adeno virus), but at one point last week, that count was zero. It is back but much lower than it was. His biggest issue right now is eating and digesting food properly. The transplant process itself is hard on the digestive tract since the chemo destroys the lining of the intestine, and it takes some time for it to heal and get back to normal. Transplant patients also complain of changes in their tastes and their appetite. So when you take a kid like Avery who has been a reluctant eater all of his life, struggles with oral aversions, and has an esophageal stricture inhibiting swallowing, the normal eating issues become much worse. There are days when we even show him a bottle that he starts gagging or vomits. We have to be a little pushy with food but not so pushy that he gets sick. Of course, some days, his tummy issues result in a ridiculous amount of diaper changing as well. One day in particular I felt like I had been participating in an athletic event after I lifted him out of bed, wrestled him to change and clean him, put the proper barrier cream on his skin, rediapered him, changed his bed, and lifted him back in bed only to have to repeat the process 15-20 minutes later. One day he ruined all of my clothes, and I actually had to wear scrubs for awhile until I was able to get my clothes washed. The doctors have said that kids with DKC1 tend to take a little longer to heal. The tube feeds have been stopped completely since they were literally going straight through him. He's now getting TPN (total parenteral nutrition) through his central line. It's not the preferred method, but it works best for him. About a week ago, I got him to eat applesauce for the first time in weeks. I was so thrilled, and with each bite, I found myself saying, "Thank you, Jesus." His eating has been hit and miss depending on how he's feeling, and definitely below normal, but I'm glad that he's at least beginning to eat some.
He's off the pain pump and doing pain meds PRN now. He has been pretty grumpy and uncomfortable for the last few days, and then last night started with a low grade fever. He also has a rash that comes and goes, but the skin biopsy came back negative for Graft vs. Host disease, which is a common cause of rash in BMT patients. Despite his bad days, I am so thankful for his progress so far. A few days ago, a little 2 1/2 year old girl passed away following complications from her BMT. She had Diamond Blackfan Anemia, which is the same diagnosis Avery was given at 1 (which has since changed to Dyskeratosis Congenita). She developed Graft vs. Host in her liver and also had a severe adeno virus. This all has struck just too close to home, and my heart just aches for the grieving family.
Last week the team of doctors started talking about a discharge plan for the first time. They said possibly this Tuesday we could be moved across the street to the Ronald McDonald House, so we started the home health education on running his TPN and giving him his meds. I'm really not good with all of that; I prefer to let Phillip do it, but I have to know how to do it for when he's not around. I'm looking forward to getting out of the hospital, but I'm also really nervous about it. You might think that's weird, but I've always had the security of knowing I could push the nurse call button and have someone come check him out or bring additional medication when he's uncomfortable, or the security of knowing his vitals are being taken regularly and recorded. Not to mention the fact that on his high maintenance days when the laundry from multiple bedding changes piles up, the house keeping crew will come in and take care of that. With Avery's last few days being pretty rough, I'm not sure the doctors will feel comfortable discharging him to RMH or not.
Phillip started FMLA on the first of December, and he's off the entire month. I am so glad! It makes things so much easier with him available more. His sister spent the night with Avery last night, which made it possible to spend our 3rd night in nearly 8 weeks under the same roof. It was so cute how Emerson spent so much time just staring and smiling at Phillip like, "Who is this funny man who keeps talking to me?" She has changed a lot in the last two months, and I'm not sure she quite knows who all her family consists of right now! Speaking of Emerson, here are a few snapshots of her now at 4 months old.
Emerson and Ava
Now, to switch gears just a little, last night was the "Christmas for Avery" benefit dinner that some friends and church family planned on Avery's behalf. Phillip and I were really in the dark on most of the plans, and since we haven't been able to attend church regularly, we were even more out of touch. But we were so overwhelmed last night by the event. It was beautifully decorated for Christmas, and there was great food, some donated by local restaurants, and the beef and noodles were homemade by Lydia Duane. The In One Accord girls sang Christmas songs, the little kids sang some classics, and Rodney, Jeff Ward, Andrew Blevins, and Jeff Liette did a lip sync to the Chipmunks songs. There was an auction with donated items, and Richie Sutherland did a photo booth with a holiday background complete with a sleigh and lots of snow. It was truly spectacular! Clearly, much work went into the planning for the night. Phillip and I spent a lot of time talking about how undeserving we felt, and how we didn't even have a clue how to properly say "thank you" to everyone for what was done. To be honest, the last year has been extremely challenging for us in many ways, and it means so much to know that there are so many people who love us and just want to lighten the load a little. We are so touched by every single thing that has been done for our family, and as insignificant as it sounds, we still want to say thank you!!
In case you haven't seen it already, here is a video that my sister made for Avery's benefit. I think it does a good job of capturing his resilience and strength despite his difficult times.
God bless,
Bethany
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