Monday, February 29, 2016
It has been a year since my last post. A lot of "life" has been going on for Camden, but mainly good. He even got a new baby sister last December and is officially a big brother. He has been sick a few times and is having a difficult time fighting things off once he gets them. I have to remember he is lacking a spleen. He has been sick for a few weeks now but after an ER visit with a shot of Rocephin, he seems to be on the mend. As far as meds go, he is still on Prevacid and a prophylactic antibiotic. So here we are with new concerns: Camden's gtube has been out since around the time he turned four. He is now seven, and not thriving. We have tried for 3 years to get him to gain. The issue is no longer oral aversion! He LOVES food. He loves to taste new things. He isn't picky. The problem is what happens after he eats and how he feels. This part of it has gotten worse. He feels full too fast & constantly complains he feels like he is going to throw up. (which he can not do because of nissin surgeries) Breakfast is out of the question and by lunch and dinner time he is slowly trying to eat to catch up on calories and then we realize we haven't reached out goal for the day. Every day. Sometimes he will surprise us and eat a lot of pasta! You just never know. With all the surgeries he has had, who knows what the culprit could be. His stomach is smaller now because of the surgeries as well. But what I do know is that it isn't ok for him to be 36 pounds being 4 ft tall and 7 years old. I took him to Nemours in Jax to see his old GI doctor. Some of his words were,"..we need to act fast..." which confirmed for me that I wasn't just being that complete dramatic crazy mother that many already think I am.;) I have been concerned over this for a while as I watched him not gain what I felt like was enough. In the last couple of months he has lost 3 pounds and that is when I decided we needed to go see GI again. We are going to do an emptying scan this coming Thursday and then an upper GI with the Bravo (which he will need to put under for) on the 28th. Camden is also going to need a gtube put back in. I would be lying if it doesn't make me a little teary eyed when I think of it, but I think it is more because I dread his little body being cut on again. I think the scar tissue he has scares me the most. And the anestesia. And the fact that he is older now and will remember things and be so nervous before he goes under. We will also go to ortho on the 23rd to do our yearly scoliosis check. (We skipped last years check up which I felt totally fine with, so he is due for one) Im sure things will be ok. Some wonderful things I am thankful for: He can run around. He is such a happy child. He is so smart and his reading is amazing. He is in 1st grade and has joined his siblings in the homeschooling journey on the Roell Homestead.:) His breathing has been excellent! He hasn't needed oxygen in 2-ish years and I don't see him needing it any time soon. His recent Xray showed his diaphragm patch still in place. Thankful. Thankful. Thankful. I do not feel getting a gtube is a setback. I think of it as a boost for his already
good AMAZING progression! I can't wait to get my boy looking and feeling more healthy. It has been 3 years of a struggle and we just kept thinking he would eventually gain while we kept trying new ways to gain and new ideas. It just isn't happening, and now his weight is concerning and scary. I will post results for tests and surgery date.