Tuesday's scopes turned out to be an all day event. We started with a 3AM feeding for Joy as it was her last food she could have prior to surgery and then Mercy at 4AM. We left the house at 5:45 and arrived at the hospital at 7AM sharp! They began preping Joy and gave her some "Happy Juice" to relax her before they wheeled her out of my site. Then about an hour later (she was only scheduled for 30 minutes) they told us she was in recovery. The doctor came out and told us that they got the scope to go down but then it stopped into a "pocket". Just above that pocket it looks like her esophagus did a 90 degree reroute. He tried for a long time to get the instruments for dialations to go into that 90 degree hole and just as he was about to give up, down it went. Thank you Lord! He was able to then dialate some.
We have another barrium study scheduled on Monday for Joy to see if we can get a better understanding of the damage after that 90 degree turn. The radiologist was worried about it's irregularity. They are not sure if the original barrium studied that showed that area to be pencil thin for about 2-3 inches was actually that or that the barrium was not able to pass that turn in large amounts making it seem to be thin.
They then wheeled Mercy in next. We went to recovery to see Joy and she was pretty groggy coming out of it. We were expecting Mercy soon as she was scheduled for an hour in the OR due to replacing her G-tube as well. Dan left with Joy so she could go to sleep at home. After about 2 hours I was beginning to get a little worried. The doctors assistant nurse came out and told us they were having trouble getting anything to go down her or up through her g-tube. The doctor had called in his partner away from his patients and he tried to no avail and then they called down the Pediatric Gastro doctor away from his patients. All three of them tried and tried and they could not figure out how on earth she could possibly be eating. But because we had told them how much she ate they kept trying. When they finally brought her out about 1:30 PM the doctor told me they were not able to get the thinist of wires in and it baffeled them all. He told me he would need to think about what the best solution would be after consulting with some other doctors and after the next barrium study for Joy. I told him I would from now on tell Mercy I was the only one allowed to empty her spit cup so we could see what was really going down to give him a better picture.
When Mercy came to, she asked if they were able to dialate and I told her no, that the opening was too small, she began to cry and cry. I'm sure she felt defeated and that this was the last possibility for her. I explained that this was only the beginning and we had to give the doctors time to figure out the next step. I told her it was actually a good thing in the sense that because the doctor can not do dialations that now the insurance HAS to approve her replacement surgery. Dialations could take a year or two for her to be able to eat regular food but with replacement surgery she might be able to eat by summer!
We left there by 3PM and got home by 4PM a tad exhausted to say the least.
She has gained 17 lbs since Dec 10th and is looking much healthier! Perhaps surgery will be just around the corner. We will see what our doctor comes up with for a plan of action.
