Audrey is still in the hospital with no upcoming plans about going home. Yesterday she went down for an upper GI. Many people have these tests, I've had one myself and it is fairly non-invasive. However, my 2 year old is terrified of x-ray. I know this so I asked ahead of time for Child Life to go with us, hoping for better tolerance. She showed up with a basket of distraction tools which made her gurney ride through the hospital lots of fun. However as soon as we got to x-ray the crying and clinging started. The radiologist was very nice and understanding but Audrey doesn't seem to understand "lay still" "keep you legs straight" "no kicking" especially once she gets so worked up. So that took about an hour and then we had a few hours of x-rays in her room which barely went any better.
So, after much miscommunication the fellow finally came in to say she does have delayed gastric emptying, her stomach is shaped funny which may be part of the problem, and she has mild SMA syndrome. Huh? I don't know that one. SMA syndrome or superior mesenteric artery syndrome was described to me as something that happens when you quickly lose weight. the fat pad between the aorta and superior mesenteric artery, which gives blood to your entire gut, is decreased causing compression on the duodenum lead to a bowel obstruction. So the plan was to consult surgery and notify GI to find their recommendations but ultimately she really needs to gain weight. So of course, once the doctor left I hoped onto google. I know it's bad and I always advise my patients to be cautious of what they read but I can't seem to help myself. The first article I read said "this is a very rare but serious and life threatening event with a mortality rate of 1 in 3." What?!?! This seriousness was definitely not relayed to me by the doctor. So I continued my google search and found lots of interesting information, not all of it reassuring, but learned there are varying degrees of seriousness and hers is still mild. That being said it is so important to get her to gain weight to prevent progression.
So here we are on Saturday, and as some people know, nothing happens on the weekend in the hospital. I know my girl has this rare but potentially serious condition on top of her already-difficult-to-treat mitochondrial disease. We can't feed her through the g-tube and they weren't able to do the PICC line so she has an IV in her hand which does not last long. She had 4 IV sticks already and they will continue to add up this weekend. I know eventually they will go to her right hand. They have avoided it so far because she sucks her thumb, but it's bound to happen and she will not be a happy camper. I am obviously still very worried about though maybe I am relieved to find an answer?? At least this new problem has a potential solution where as everything else she has is just hoping and treatment of symptoms. So here's so to at least getting a plan for Monday since nothing will happen on the weekend!