7/27 Update
A lot has happened since I last updated. The big news is that Patrick had GI surgery on Friday, but before we get to that, lets refresh. On July 15th, he had a pH probe. We were told it came back positive for reflux. Apparently, that was not precise. It came back positive for reflux episodes--I believe 37 of them, all told. However, his Demeester score was 14.5, and a pH probe is not considered positive unless the score is greater than 14.72. So, although clinically, he has appeared to have reflux, the test was negative as far as the GI docs were concerned. The cardiologists, however, were quite concerned because if Patrick does have reflex and is aspirating, it may be exacerbating his PAH (pulmonary arterial hypertension). So, there was a great deal of back and forth between general surgery and CV (cardiovascular) surgery about what should be done. The two options were a GJ-tube or a Nissen fundoplication.
Heading down to surgery (pic)
Last Thursday, Patrick's surgeon and the head of general surgery finally had a chance to talk and they agreed that the Nissen was the better option. Although it would entail additional surgery (whereas a GJ-tube could be done without it), the GJ-tube wouldn't fix the reflux--just its symptoms. Thus, if the reflux episodes were causing aspiration and exacerbating his PAH, a GJ-tube wouldn't fix it. In addition, the GJ-tube would require continuous feeding, which would make life more complicated overall, as well as making it difficult for him to learn eating by mouth because without bolus feeds, it's hard to develop the sensation of hunger. Phil met with the surgeon and conferenced me in by telephone. We were all in agreement that the Nissen was the way to move forward.
Post-surgery with his angels watching over him (pic)
So, Friday afternoon, around 1:00 p.m., Patrick went down for surgery. We had a chance to talk with the general surgeon who was doing the procedure, and we were quite pleased with her. She was able to keep his G-tube in the same location, both internally and externally, which greatly reduced the amount of healing he would need to do. However, healing from the Nissen is still complicated. A Nissen essentially takes the stomach and wraps it tightly around the esophagus so that nothing can come up. It works like a one-way valve, in that food can still be swallowed. However, because the surgery needs time to heal, Patrick is on continuous feeds for the next two weeks. Then, they will start compressing his feeds over shorter time periods.
He's still been somewhat tachycardic, but his oxygen is good. He was on the vent for surgery and shortly thereafter, but was successfully extubated that night. They were able to start small feeds the next day (yesterday) and he is already up to 35ccs per hour, toward a goal of 40, and isn't even 2 days post-surgery. He hasn't had any retching and he's already getting a lot less pain medication than most kids at this point. We have to vent his G-tube every 4 hours because he can't burp or vomit, so the tube is the only way for him to get relief (although he has been farting pretty well, which helps).
We are expecting to be here roughly three more weeks, while they do the continuous feeds for him to heal and then see how he responds to bolus feeds before sending him home. That is, however, just the GI side of things. He still needs another echo to see how his RV pressures are doing now that he's just on the medication and not the nitric. Given his tachycardia and lower sats, I'm concerned that he hasn't made enough progress on that front, but we'll have to wait to see what the echo shows, and they will probably wait to do it for another few days to allow him more time to heal from surgery for a more accurate reading.
Overall, he seems to be doing well and, hopefully, the Nissen will help both the reflux, the lack of weight gain, the vomiting and discomfort from feeds, and any aspiration, all of which should improve his cardiac outlook. Only time will tell.
