Boston updates... from July!

Peter went up to Boston at the end of July for SURGERY! These were not the intestinal closing surgeries that we hope for... one day. But they were surgeries nonetheless. The big deal about "surgery" for Peter is that we had been told in the past the he is a terrible surgical candidate due to his portal hypertension (great bleeding risk), elevated INR (another bleeding risk), and history of poor healing from earlier surgeries on the abdomen. Dr. Jennings has discussed Peter's surgical risks and possibilities with us before (see old posts). As such, we all felt it was a good idea to do these surgeries to help make Peter more comfortable as well as to see if he heals better then he has in the past and to see if the bleeding turned out to be terrible or not.

The surgeries that Peter had done were to move the gastrostomy to a new site, close the old gastrostomy, and close the bilateral hydroceles. This all came about because we were going to be putting Peter to sleep for an upper endoscopy (EGD)to evaluate his esophageal varices (which are due to portal hypertension). I will try to post pictures of his last gastrostomy site and how we had to dress it to keep it from pouring out. The old dressing consisted of aquacel, allevyn, zinc paste, part of a nipple from a baby bottle to stabilize the G-tube, a nursing pad over all of that, surrounded by tegaderm all along the borders. This would be changed one to three times a day, depending on leakage amounts. Our new beautiful G-tube only needs tape to keep it secure, no dressing, just a little skin prep or zinc to protect from scant G-tube ooze. The old site healed remarkably well with some stitches to close the stomach opening and wet-to-dry dressings to close the rest of the hole. It is just a tiny scar now. The hydroceles healed well too. There are two perfectly-healed thin scars from that procedure. Dr. Jennings and Dr. Kamin said that the amount of bleeding was not much, especially considering that he has portal hypertension. Also, the EGD revealed that there has been no increase in the size of the esophageal varices since the evaluation two years ago.

We have started nighttime pump feeds with Peter...very slow rate to begin with. (Elevating the head of a toddler bed-- to keep him from lying flat and getting formula in his lungs while he is tube-fed-- is not as easy as one would think, as the waterproof mattress is slippery and the sheet then moves quite a bit.) We are hoping then to not have to chase him around the house every hour to drink his formula, and to hopefully leave him more physiologically hungry during the day so he will want to work more on eating food. We are still only giving about two ounces of baby food daily, but aspire to increase that over the next few weeks.

Along with pump feeds overnight we are changing from Peptamen Jr to Vital Jr. They are similar products but the flavor of Vital Jr is better than Peptamen Jr and there is a prebiotic in Vital Jr as well.

We have increased his IV iron to see if he can pull out of his anemia. We went from 15mg iron dextran to 25mg. He had pulled out of the anemia before once we put him on IV iron, but he has gained weight and possibly just needs a bigger dose. I am greatly reluctant to put him on enteral iron b/c of the GI side effects that can come from enteral iron.

Back to Boston later this month. That will be just to check in with the Intestinal Rehab Clinic. We are thinking we will get another reduction in TPN as Peter is gaining weight well. He sure seems to feel good!

We have also started vitamin D drops. Endocrinology wants his vitamin D levels up at 30 or above given his istory of osteopenia. Despite going outdoors daily for one to two hours all Spring and Summer, his vitamin D level is only 22.