Slight Respiratory Distress

Elias had his Esophageal Dilatation canceled this morning at the request of his pulmonologist.  We saw her on Monday and Elias is still wheezing and having some difficulty with labored breathing. They are not sure if it is a trach related infection, viral, or what. They increased his neb treatments and strength of dosage, along with a course of oral steroids to assist. His surgeon really did not want to put the dilatation off, but understood the safety risk of being under anesthesia. So it is rescheduled for next Wednesday. There is a 50/50 chance Elias will have to be admitted after the surgery. It really depends on him and how his respiratory status is. His surgeon told us sometimes with trach patients they like to observe them overnight in case there are anesthesia related respiratory issues. So there is the potential for being in the hospital for Thanksgiving. Hopefully, things will be smooth and that will not be necessary. Elias generally has not had any issue with this surgery, which he has had many times prior.

We saw the GI doctors on Monday also. They changed his antacid regimen by adjusting dosage and frequency. They also changed his feed schedule to accomplish two things, better medicinal absorption and compressing feeds further to encourage weight gain with better absorption of nutrients. However, the practice of this new feed and medicine schedule is intense. He is now being fed 53ml per hour one hour on, one hour rest. So every other hour we are hanging new feeds. That doesn't sound like much, but between all the meds and the feeds, the time goes by so fast you feel like once you get one thing done, it is time for something else. This is not encompassing any of his other cares like diaper changes, stretching PT, etc. So life just became a little busier. Which also means more to plan for Doctor visits, as we will no longer have the luxury of our 4 hour rest, so the feed pump will also travel on the pack mule...a.k.a. Dad. :) The GI doctors commented that while Elias is gaining on average the weight they would like to see, he is still well below the standard curve. He is actually not even able to be plotted on the "growth chart curve" and he is showing signs of  a sharp curve down for some reason. They did say that on a positive note he is growing and gaining proportionately, so the need for overwhelming concern is not needed at this time. As of Monday, Elias is 4.6 kg or 10 lbs 2oz and 21 1/2 inches tall.

We also saw the cardiologist Monday. They did an echo and an EKG. They said things are looking fine still. The VSD is still about the same size, small with no need for great concern. All of the other heart issues seem to look good as well. We actually do not have to go back to see them until next November!! Whoo Hoo! One less doctor! So now we only have 9!! It is the little things worth getting excited over, isn't it?

Besides Elias' surgery next week, we have a few weeks off from doctors, which will be nice. Our next round of appointments are the middle of December with Hematology and Genetics. This will be when we find out which type of FA Elias has and create a plan along with blood counts and discussion of bone marrow biopsy. Until then we are going to try and enjoy some time at home and play!