Thursday, June 14, 2012
OK, we had Ian's surgical pre-op this morning at CHOP. After running an hour behind, we were able to get into a room since Ian needed to eat and his blood sugar was dropping. The Dr. was running two hours behind but fortunately we were able to move up a bit due to his situation.
It was decided from the previous upper GI series and radiographs that approximately 1/3rd of Ian's stomach is in his esophagus! No wonder the kid never wants to eat or swallow!! The vomiting and retching now is definitely due to reflux and not dumping syndrome or osmolarity issues.
Dr. Blinman informed us that this is a much more complicated surgery than the initial one. He needs to try and use the same incisions, but may need new ones because of scar tissue. He is also going to try and preserve Ian's G Tube site because it is working well and healed wonderfully.
Once in, the surgeon will need to repair some of the dissection that may have been done before. Some surgeons are a little more "scalpel happy" than others. Sometimes the dissection is done to make the surgery "easier." Dr. Blinman will repair the damage done, if any.
After that, he will need to cut through all of the scar tissue that has formed from the prior surgery in order to "UNDO" everything from before. He will need to start from scratch in order to eliminate the hernia. This takes most of the time.
Dr. Blinman said that after he has done this, he can begin again. This time, Ian will have a Toupet wrap, which is a 3/4 wrap. This type of fundoplication brings the posterior part of the top of the stomach around the back of the esophagus into the front. It is then secured to the esophagus itself, leaving 1/4th of the esophagus open with no stomach attached.
This wrap allows enough "tightness" that he will be unable to reflux through it, but allows 1/4th of the throat open to allow for expansion when the *real* need to vomit occurs.
The surgery will take about 4 hours and the efficacy of the Toupet wrap the second time around is the same as if done the first time around. They have the same success rate... which is very reassuring because most wraps decrease in success as they are repeated, or repaired.
We will probably be in the hospital for about 4 days, depending on how the feeding routine goes. After the surgery, Ian's late dumping syndrome, or reactive hypoglycemia, may disappear. They will begin from scratch with evaluating what he can tolerate with feedings and what his system needs.
The time has come for this repair because over the last 4 weeks, Ian has vomited over 20 times. The vomiting comes during feedings or right after, signaling a reflux vomit as opposed to a hypoglycemia vomit. It is sad that we can not only distinguish between spit-ups, vomits, and projectile vomits..... but now we can also classify them!!
The surgeon at CHOP that will be doing the surgery does all of the reflux surgeries here and runs the clinic for these types of kids. He is wonderful and I wish we could have found him before hitting bottom last fall. We are glad to have him heading our team now.
Tomorrow we visit with Endocrinology about growth. Ian has not grown or gained weight in over three months. He is now off his growth curve, even for his adjusted age.... 30 inches and 22 pounds. He has even lost a little weight. They had backed down on his calories to make him hungrier in hopes that he would eat more, but he didn't. Between the cut backs and the vomiting, they were not surprised about the plateau. We will evaluate for hormonal treatment or other options tomorrow, and most likely after the surgery.
The surgery is scheduled for Monday, July 30th. It is not considered emergency surgery and that was the next available opening. In the meantime, we will keep Ian's feeding hourly rates low and do the best we can to keep what we feed him in his belly. I don't know what feeding therapy will be in the meantime, but we will assess that next week.
Thank you everyone for your prayers, thoughts, and concerns for Ian. Having such a large and loving support group of friends, family, and FB lovers means more to our family than I could ever express. I will post more as we get more information.