According to Patrick’s surgeon, the procedure went as well as could be expected.
We got up at 4:30 this morning to be able to make it to the hospital by 6:00 a.m. We discovered as we were getting him ready that his TPN pump had malfunctioned and did not run overnight. Amazingly, though, he was doing ok. I learned to use his glucometer just the day before and confirmed that his blood sugar was low, but as soon as we gave the TPN, it picked back up. When we got here, the surgeons weren’t overly concerned, since things had normalized.
We checked in as usual, put Patrick in little hospital pj’s (he’s now big enough to wear the pants!), and then waited to talk to the surgeons.
Dr. Rollins, the surgeon, came first and we talked about the plans for the day. As we discussed things, we decided that in the interest of not wasting places for a central line to go, that we would leave Patrick’s PICC line in until it becomes medically necessary to pull it. Then we visited a bit with the anesthesiologist, who looked an awful lot like Shaggy from Scooby Doo.
Then it was off to the surgery waiting room. Urology was scheduled to see him first so, although we were tired and starving, we hung around till we talked to them. They were able to get a catheter in with minimal difficulty so they didn’t do any other procedures. They gave us written and verbal instructions to prevent future problems and then went on their way.
We grabbed a quick breakfast, then went back to waiting. Dr. Jackson, Patrick’s GI, stumbled across us in the waiting room and was excited that he could go in and see Patrick’s anatomy firsthand.
Then we had a long, long wait. We didn’t hear much over the next 3 hours. But about 12:30, Patrick’s surgeon came in smiling. Since we had a lot to talk about, we got to go to one of the consultation rooms for the very first time.
The surgery went relatively smoothly. The only thing unexpected was that the adhesions (severe scarring) that he had were worse than they’d anticipated. They had to take extra time to remove them and find the ends of his intestines.
They put the two pieces together, although they are a less than perfect fit. Dr. Rollins held up his fist and touched one finger to it and said that it looked proportionally about like that. As it turns out, he does not have any jejunum.
He has 17 centimeters of duodenum, measuring from the base of the stomach. This means he doesn’t really have any of the absorbative portion of the small intestine. He does have the left side of his large intestine, the descending colon. It is pretty apparent from what is left that the cause of his short gut was probably that the blood supply to the intestines was lost because they twisted. None of this is really new to us… but it was nice to have it finally confirmed.
They also did a liver biopsy. Dr. Rollins said that on visual inspection the liver looks relatively healthy. It is generally a good color and only a little more firm than normal. This is VERY good news for Patrick right now.
So – where do we go from here? Because the large intestine has never been used, it will need to stretch out and get used to being used. First, though, the point where the intestines were stitched together needs a chance to heal. Right now it is most likely swollen closed.
Until that point, Patrick has a tube going through his nose into his stomach that will suction out stomach acid. Eventually, his intestines will heal and adapt and that won’t be necessary.
The main goal before we can take him home is that he be able to pass stool and no longer need the suction. We’ve been told to expect about 2 weeks of recovery before this is possible. Then we can begin again to work with him on feeds.
In the short term, he’ll stay here in the PICU for a little while. Because of the amount of scarring that needed to be removed, he is in more pain. So right now he is still intubated so that he can safely be on a morphine drip. That is the plan through the night, and then tomorrow they’ll talk about extubating.
With all the tubes, though, he looks pretty good. He obviously hurts. But he has woken up and looked at me… and with the morphine, seems to be resting very well.
The rest of our day will be spent getting settled and keeping Patrick comfortable. And then just working on a quick and smooth recovery. I see all good signs here that they think he’s very stable.
I’ve got pictures to post… but forgot my card today. I’ll add them ASAP.
Patrick Hoopes 