Prior to the OR.
Jaime was taken down to the OR holding room about 2:00 pm yesterday. He had his last giant "poo" in the holding room....oops! There we met with the physician conducting the studies. After talking in length about Jaime's digestive issues, the dr. decided to change what we were doing in the OR. This is what Jaime was supposed to have done...an esophageal and colonic manometry. Then it was changed to an EGD, esphageal and colonic manometry and a colonoscopy, a colonic manometry, a balloon dilation and Botox. We walked him in to the OR (something we decided that most parents go their whole lives without ever having to experience-and thank God for that), laid him on the OR table...kissed him goodbye as he drifted off to sleep. We went down to the cafeteria, my phone rang (my heart stopped), it was the OR...changing the procedure yet again! I told them to do whatever they needed to within reason and that I would consent to it. So, what did he end up with...he got an EGD, an esophageal manometry tube placed, a balloon dilation of his pylori sphincter (the area that empties food into the intestines), he had Botox injections in this same area, he had a flexible sigmoidoscopy and finished with Botox injections in his anal sphincter. He had several biopsies along the way as well.
After the OR, back in his room.
So, why did they do all of that? Well, the balloon was placed to expand the sphincter to help his stomach empty faster, the Botox injections are to relax the area to allow for easier passage (both in the pylori and anal sphincters). So these were the "correction" to the emptying issues. The only problem is that this only lasts about 2 to 3 months. So, depending on how the next few months go, we may have to do it all over again or he may end up on medication that allows for him to have a faster digestive system. We won't know that until we get the results back from the Manometry study that is currently running.
Before I get to the manometry, let me explain a finding on the EGD. Someone finally figured out what was going on with the "narrowing" near the esophagus! It's actually a vein that goes along the back of the esophagus...the downfall to this...it's constantly pulsating and this is likely one of the reasons he gags and throws up a lot. The way to fix this is actually through a heart surgery...in which he will NOT be having. There is potential for Jaime to grow out of it, so the GI dr. was just going to make the cardiologist aware of this finding and have it monitored that way.
Now on to the manometry study. Jaime had the tube placed in the OR yesterday...to have the study started today. It takes 6 hours, we're actually almost done. First they hooked him up the to manometry machine, ran it for an hour, then gave him IV medication, ran it for almost 2 hours, then let him drink Pediasure. They ran it for another hour or so, finally he got his last dose of IV medication for the study and he has to be on the machine until around 2:30 or so. They will pull his tube (the one in his nose that goes down into his small bowel) and we should be good to go. It will take a week or so for the dr. to interpret the study, they will call us with results sometime next week.
On the manometry machine.
All of those blue tube looking things to the left of the picture are sensors in the big tube in his nose down to his intestines. The monitor shows what his digestive system is doing.
All of those blue tube looking things to the left of the picture are sensors in the big tube in his nose down to his intestines. The monitor shows what his digestive system is doing.
After the first dose of medication on the manometry.
We will be discharged today. While the study will be done before 3:00 pm, Jaime's hemophilia medication will NOT be here until AFTER 3:00 pm. Jaime will be coming home needing IV Factor twice a day for the next 4 days. His factor VIII level wasn't very high after the OR, so they're pumping him up again. Jaime's home nurse will come over tomorrow to start a line and I'll infuse him until next Tuesday. We just need the meds to do it with. They want to cover him since he had so much work done, including the injections. So, that's it in a nutshell.
After FINALLY being aloud to drink...he wanted Banana Pediasure...and he got it.
Jaime's been a trooper through it all, though I have to say, he pretty much hates everyone that walks in the room. He immediately starts crying...and it's a pathetic cry because his throat is so horse from the breathing tube in the OR...not to mention that he's only had 2 Popsicles and drank 7 ounces of fluid in the 3 days we've been here. He even managed to kick Bev when she was here visiting because he doesn't want anyone here. :( He's literally done nothing in the last 24 hours except lay in bed and pretty still I might add. I hope that he's able to go back to his normal self once we're home. I know he misses Jared a lot, so seeing him will perk him up.
Anyway, that's the update. I'll try to update later this weekend to let you know how Jaime's doing. Thank you for continuing to keep Jaime in your thoughts...it means a lot to us!
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