Kaden is happy, mostly healthy (for him) and excited about the holidays. He's really enjoyed the last couple of weeks because Brandon came for a visit. Brandon leaves tomorrow and it will be hard on all of us, especially Brian and Kaden. It's hard to prepare a child with Dysautonomia for any physical or emotional compromise because either one can throw him into an Autonomic Storm. Those can be gruesome times for our family.
So, I'm sure you read before that the team in Charleston put him on a "hunger challenge". What. A. Joke.
We know that no mal-intention existed regarding the doctors, but they seem to rush everything. Sometimes it's very intimidating speaking to the head doctor, especially when he makes a mistake, and correct him while simultaneously being graceful. I've worked too hard on becoming a graceful, knowledgeable and a humble advocate for Kaden. I must continue to speak on his behalf, as will Brian.
In the beginning of the "Hunger Challenge', Kaden started asking for food constantly. He successfully ate tiny little portions throughout the day, but didn't want to drink. However, we still rejoiced in the fact that he wanted to eat. He also can't eat large portions because of his Nissen wrap. His stomach is only 2/3 the size that it should be, and for some reason unknown to us, the team can't remember that important fact. We noticed a significant decrease in his energy level. We were told to take him to the pediatrician everyday to weigh him and to have his urine checked to make sure we weren't compromising his kidneys. That part of the challenge only lasted 2 days when his urine test came back abnormal.
The doctor said to start giving him plain water through his g-tube to keep him hydrated, but to still hold his feeds. He truly believed that Kaden would snap into "hunger mode" if we took him off his feed. Five days into the challenge, we were still encouraging very high calorie foods for Kaden, but his little cheeks disappeared, his pants started falling off, and his hair started falling out. We returned to the doctor to find out his weight plummeted from 35.8 lbs in March, to 33.9 lbs in June, to 32.6 lbs in August, to 29.4 lbs at the appointment. We pulled out Kaden's weight logs. He hasn't weigh 29 lbs, aside from a his complications after surgery in 2010, since he was 23 months old. If my math is correct, he's lost almost 21% of his body mass since March, and the majority of it since he's been off Mestinon. His doctor also made his own observation that Kaden has not grown in height in over 24 months. He also made the observation that the team should start listening to Kaden's family.-For that, we are grateful.
Amazing.... a humble doctor realized he screwed up big time. Three years of progress with Kaden's weight have now been flushed down the toilet. Dr. S hugged me and said we need to keep marching on, but slowly. The doctor reinstated some of his feeds and thought that he would go ahead and try to stretch Kaden's stomach by giving him a large volume over a few hours. Need I say that this plan failed as well?
This is the same trial that we've done every month for the last 2 years. Same result- retching.
We emailed the doctor to inform him of our concerns and he finally threw the towel in. We assume he contacted some colleagues to educate himself more about Kaden's delicate and extraordinarily rare disorder. So, here we go again....back on the roller coaster of trying to help our son thrive. We made so many sacrifices to be here so he could get better. I'm really struggling with grace, patience, and understanding right now. We would like to see him becoming more typical everyday. More genetic tests will be completed soon, and than we might be able to pinpoint a better care plan.
Progression of his weight loss captured by photographs...July- now- the most bothersome realization is that his arms have even lost fat.
Love, Us
