that is what I call our dr visit days to Duke. Wednesday was this months day, and we had 2 appointments this time. One with the surgeon and one with the Gi doctor.
The surgeon was first. He was very pleased with Riley's progress and said "it's time". Meaning time to do the surgery. Riley is big and strong enough now, that anytime we want to "get rid of that thing" as he said, we can schedule it. We are still planning to hold off, until likely September, and the surgeon is agreeable to that, as keeping the ostomy is not hurting Riley, it just makes more work for us. But we would like to get through the summer months first, and enjoy our summer. We go back in August (no July appointment necessary, hooray!) and will probably schedule it then. He said before the surgery, he would need to have a contrast enema done on Riley so he could see what he was dealing with, in terms of his large intestine. Since we were going to be there all day, he got it arranged to do right after our appointment with him, then it's out of the way, and we took away the chance of having to drive all the way there and back, for a short procedure. He also expects Riley to be in the hospital for MUCH less time than he originally speculated for this surgery. That was shocking news.
The contrast study afterwards, which should have taken about 10 minutes, ended up lasting about an hour, and an entire hour of Riley just SCREAMING. WHy did it take so long? Because Riley is SO strong and SO strong willed, that he was pretty much making it impossible to do the test. I'll spare you the details, but they did manage to do it, and the fluid flowed all the way through what large intestine he has left!!! That was GREAT news in itself because it was previously thought that he had one complete stricture, or blockage. There is an area that is narrowed that I could see, and I suspected in my mind that it would have to be removed for sure, but the doctors of course are the experts.
Afterwards, we went for a quick lunch and then back to the clinic for appointment number 2 (or does that make it 3 now?) of the day. The GI doctor was once again thrilled with his weight gain (16lbs 6oz - still below the 5th percentile), and his length. He had seen the results of the test we took earlier, and he said, in his expereince what he thinks will happen is this: That one area of narrowing, which is about an inch and a half in length, will be removed, and the rest is good and will stay. Granted, the study from the exam before his last surgery didn't show any issues with his right colon, and when they got in there, it was so dead it wasn't salvageable, so they had to remove it, but fluid passed through it ok, so the study doesn't tell everything, but right now, things look good for his next surgery. He said that if that is the case, that only that one area has to be removed, and he keeps the remainder of his large intestine, that he will be left with plenty of large intestine to remove the water from his stools and have normal bowel function (not diaherrea all the time). That was GREAT GREAT news. He then once again told me, that this is NOT the norm. He agreed with the surgeons estimation of how long he'd have to spend in the hospital, and just expressed how overall thrilled he is with Riley's progress. I asked him if he still considered him short gut...and he said he HAS a short gut...but is regaining NORMAL BOWEL FUNCTION!!! How exciting and amazing is that?! Just amazing and SO far from where we came from and where we thought we'd be at and be heading.
When he was finished talking, the nutritionist came in, she told me that they are "opening the flood gates" on foods. I can feed him anything I would a normal baby...and they no longer feel like any food is likely to trigger such an extreme reaction that he'd be hospitalized any longer. There is ALWAYS that chance, but it's so much smaller of a chance now. I still have to be cautious, monitor his output, etc. There is likely to be foods he just will not tolerate, and that's ok. But at least we can try things and find out,and not have to be truly fearful of what will happen. She even said, "if your baking a cake, and want to let him have a little lick of icing, go for it...just don't let him eat a whole bowl of it of course".
So overall, a positive day. Saw the ostomy nurse who taught me everything I know, and she also was so pleased with him AND his ostomy and answered a few questions I have. Thankfully, Riley doesn't do an army crawl, and hopefully he just won't because THAT will make things challenging. As it is, he tries to pull off his bag when he can.
We go back to Duke next Saturday for the ICN reunion and it'll be so nice to see some old friends and let them see how far Riley has come!! Our good buddy Carter will be there as well.
Riley wasn't up for pictures after his contrast study