In August, Manny started having troubles with major retching and respiratory issues and we landed in the hospital with atelectasis. Released. Eventually, the tube popped out and we waited 4 days for a new one. Still retching. Released. Tube seemed out of place so back to the hospital. Tests showed it was in place. Released.
Each doctor seemed to think it was a different body part than the one they were in charge of.
For the next 1 1/2 weeks, I did a dance. A very, very dangerous dance. Food was ending up in his stomach (which to him is lifethreatening). So I would have to vent that out so he wouldn't aspirate too much. But if I pull too much, he'll end up dehydrated.
GI was convinced this wasn't a GI issue so I rethought the whole thing and decided ... if the retching isn't coming from below, then maybe it's actually choking and it's from his head/throat.
I go the the ENT. He sees a small episode and looked in his throat ... tons of fluid and he is aspirating. He said there are only 3 ways to deal with secretions that can't be managed. 1) Medicine (such as atropine) but we're way beyond that with him. 2) A Trach. 3) A surgery to tie off the 2 parotid glands and remove the 2 submandibular glands. And he suggested we go with option 3.
I was in shock. I even posted on Facebook that I had news but couldn't share it yet.
So with that news in mind, I started to rethink the problem. The retching can certainly be explained by aspiration but why is there still formula in his stomach?? I went back to the basics: The simplest answer is almost always the right one. In this case, the simple answer is human error ... that I'm putting formula in the wrong port. (Let me assure you ... that's not it!) So assuming that I'm not an idiot, what's the explanation? His Jtube is out of place and has looped back into his stomach (again).
I set out to prove it. I contacted a friend of a friend and they suggested the dye test. Pull stomach contents in a syringe and save. Put one drop of blue dye in 5ccs of water. Put in the Jtube. Wait 30 seconds. Pull stomach contents. Compare. If they're the same, then repeat after 5 minutes, then 10, etc.
His results? Before syringe was formula. After 30 seconds it was blue formula. VERY VERY clear results.
I was MAD. Why am I having to figure all this out?! why is no one believing me? why is no one taking this seriously? For almost TWO weeks, I've been putting the milk in there on faith that the tube was in deed in place. I was having a hard time not screaming.
Call the GI ... let's just say he doesn't believe in the blue dye test, is certain the tube is in place and will see me Wednesday in his office. Thankfully he hung up pretty quickly before I lost it on him. I don't want to do that... I believe in not burning bridges.
Meanwhile, every day Monday-Friday, our Muscular Dystrophy Clinic doctor has been calling some GI docs he knows in Gainesville, Shands Children's. Couldn't get hold of them. But that's where he would like me to go. They have won several awards and were top 5 in Pediatric GI in the nation.
Dan, Manny and I go to dinner at friend's house (Rich and Elsa) and they ask what is going on. I tell them about the whole thing. They used to live in Gainesville and Rich's brother Bill still lives there. So he called him. It was Friday night about 9:45. Turns out, Bill's wife plays tennis with a Pediatric Doc at Shands.
Friday night, I am very conflicted about what to do. I feed him, in faith, basically. His heart rate is erratic ... a sign of dehydration. He's not peeing. We have very little time to figure this out.
Saturday morning, Dr. Thompson (the friend) calls and asks what is going on. I explain. She calls the ER attending, the surgery team, the GI ... all believe we need to get to an ER ... soon. They work out that we can come there.
So Kaley, Manny and I head up (took almost 3 hours due to the Gator football team being at the swamp).
We arrive before 3pm. They are all very nice and had already been informed about what is going on. They start running tests.
Chest xray shows diffuse fluid, but not pneumonia. (GREAT news).
They do a contrast study to show where the G and J are. And to my shock and horror ... the test showed everything was NORMAL. What/??????
I was in tears. I just knew these people wouldn't believe me either. I just knew that they would chalk me up to being psychotic or something. For about 5 hours, I sat there just praying for answers. Every time a doc would walk in, I would tell them that I just KNEW something was wrong, even if the tests weren't showing it.
|Doesn't he look tiny in there? They have a nautical theme and this is the door to his Emergency Room|
FINALLY, a test came back. It was conclusive. The J tube is completely in the G. And his nissen fundoplication is not functioning right. Apparently, his anatomy isn't typical. Part of the bowel sits on top of his stomach. So from a certain angle, you can't see that. So they waited 3 hours (when the contrast should be basically completely out) and then put him under xray in several positions. This proved the bottom part of the J is IN the stomach. They only kept doing tests because I was soooo sure I was right. The whole time I kept feeling crazy but kept pushing anyway, going with "gut", "intuition", "the Holy Spirit" ... whatever you want to call it. Thrilled that I was listened to; trusted enough to keep doing tests even though ALL tests showed nothing is wrong.
I just about lost it. I felt relief for the first time! I was right. Now we can formulate a plan.
What is that plan? Stay tuned. I'll let you know when I know. Just wanted to get this all out since many people are wondering what is going on.