We took Elias to see his GI team last Thursday. They are the team responsible for managing Elias feeding and overseeing his growth. Unfortunately the politics of the hospital plus the fact that Elias is part of the Aero Digestive Team prevent him from seeing the Fanconi Anemia GI specialist. It is a long complex and idiotic issue. It actually took the FA dietician pushing the dietician that is part of this team to actually set an appointment. So many thanks to her for helping us rage the battle and winning. FA children can not be managed on paper and that is what this team is trying to do. It is even easier now that the hospital is on a new computer system that allows all a patients information to be access across multi-discipline channels without waiting. On paper this is an amazing tool, but we refer to this system called EPIC as EPIC Fail! This is mainly due to the fact no one truly knows how to use it properly. Each doctor, nurse, or support staff learn the minimum and still struggle with it. That in turn leaves information out and prevents the most current information from being accurate. We know this because every clinic visit we have to make the same changes repeatedly.
So on to the appointment...According to the scale in the GI clinic Elias now weights 8.4kg or 18 1/2 pounds for us Americans, and is 28 1/4 inches tall. His last weight 3 weeks ago was 8.02kg at his IVIG. That is a big jump for someone that has hovered at the 8.0kg mark for nearly 8 months now. We go back for IVIG this week so we will see how the scales correlate. If he is back down the we are going to question the best how we will go about tracking things. As we were mentioning earlier the FA dietician also helped impress on our team’s dietician that FA patients must be physically seen versus trusting plots on a growth chart. This is due to the varying growth factors. As with Elias although he his almost 2 1/2 years old he is still the size of a 6-9 month old. However, when you see him he looks healthy and even has a little chub on his thighs. That means he is getting the calories and volume he needs with his feeds. On the flip side the paper assessment dictates increasing his calories and volume intake because his growth chart has plateau rather than keeping a curve. After minimal debate from us GI has agreed to regularly scheduled visits every few months for this monitoring.
While we were there we brought up the issues we mentioned a few updates ago about potential dumping with his feeds. They agreed that there might be some concern. We need to track his blood sugars now for a few weeks to see if they are changing during the episodes. So we are having to do this at the start of each feed, at the time he begins to exhibit the symptoms and again 1 hr after the feed ends. This will amount to about 12-15 checks per day for a couple of weeks at least. Hopefully, this will be short term and not become a regular routine on top of all the other things we have going on with his cares. They did say that even if it is positive for dumping they do not feel as though there is any chance this has any connection to the apnea episodes, even though there is documentation that this type of event can occur time to time if the conditions are right. So we will see what we get with this and pray that there is not much issue.