This past week has been tough! After the dilatation did not work, the plan has become to try an reverse the fundoplication, with hopes that once the wrap is undone, Jadon will be able to cope with his secretions. There is still question of whether they should redo a loose wrap, a partial wrap or no wrap at all. Of course, if the fundoplication is undone, the likelihood is Jadon will once again experience severe reflux. In view of this, the medical team decided to change his G-tube (tube sticking directly into his stomach) into a GJ-tube (a tube through the same hole, but passing through the stomach, through the duodenum and into the jejunum). The thought is that the feeds entering directly into the intestine will decrease the acidity of the stomach and thus decrease the reflux once the fundoplication is taken down.
This change in feeding tube was done on Tuesday and once again, it was tricky to get the procedure completed on Jadon. I asked the radiologist who completed the insertion about the danger of intussusception (when the small intestine telescopes on itself), a potentially dangerous issue sometimes triggered by a GJ insertion. I was told that it mostly happens with younger children/infants and it was very rare in someone Jadon's age. I should have taken that as a warning!
On Wednesday, Jadon was showing some abdominal discomfort and was taken for an x-ray and ultrasound. They discovered some fluid collections around his stomach and they were querying a perforated bowel. I rushed to get down to the hospital in the evening as it was indicated that an emergency surgery was quite likely. An upper GI study under fluoroscopy ruled out a perforation and so that was averted though the adrenaline rush to the whole family was not!
Over the weekend Jadon was more lethargic, to the point where he spent all day Sunday sleeping and/or just hanging out in my arms, which is NOT like him at all! He could not even be talked into a walk to the playroom or splash with water in his bed. Since all his vital signs were good, the staff kept an eye on him but there was nothing to intervene on.
At shift change, Jadon's blood pressure was quite low. General surgery, GI and CCRT were called. Given his lethargic state and continued dropping of blood pressure, they wanted to take no chances on Jadon and we were once again admitted to the ICU. Jadon received another blood transfusion and blood pressers for a while to get his pressure up. He looked quite good in the morning and back to his mischievious self, but his stamina was gone. By the early afternoon he was quite lethargic again. With several more x-rays and ultrasounds, they determined that yes, of course, the rare instance occured. Jadon had intesusseption. So they have removed his GJ-tube and replaced it with a G-tube. (one step forward, one step back). He is feeling a bit better now but still in abdominal pain. They will continue to monitor him and hope that he will be over this in the next few days.
As we were admitted into the ICU, we were told what room number we were going to. Sara looked at me at said, "Figures, that is the ONE room of the 8 possible rooms in the cardiac side that we have not been in yet!"
Jadon is still quite week, somewhat lethargic and has very little stamina. He is still a lot of work as we manage his pain, care for and protect his chest wound, and make sure he maintains a good fluid balance. It will lilelybtake a few weeks yet until we get the full Energizer Jadon. However, we are making progress. He is having moments where his mischievous twinkle returns to his eyes. They are becoming more frequent and lasting longer.
