At the Museum of Play
We drove up to Rochester on Sunday, a day before Nolan's pediatric surgeon appointment. Rochester has a few kid-oriented museums, so we went to the science museum on Sunday and the Strong Museum of Play on Monday morning. Nolan and Matt had a blast, and we really enjoyed making time for some fun amidst the stress of the surgeon appointment.
The appointment was at Golisano Children's Hospital, part of Strong Memorial Hospital. Every time I go through Nolan's history, I realize how long it is. And I always forget something - though I was fortunate to have Dennis with me this time to help fill in the gaps. I do have his history typed up in a nice word file, but somehow managed to forget it on this trip (argh).
The surgeon did ask us why it had taken so long to get a referral for a fundoplication - with Nolan's symptoms, airway involvement, and severity, he should have had a Nissen quite some time ago. We had to explain that we (the parents) were the cause of the delay - his ENT wanted to refer him for surgery quite some time ago, but we wanted to exhaust every other avenue prior to doing this surgery (which, frankly, scares the bejeebies out of us).
The surgeon explained the procedure and how the fundoplication works - the fundus of the stomach is wrapped around the esophagus, and when food enters the stomach it fills the wrapped fundus, exerting pressure on the esophagus to keep anything from going UP.
We discussed our concerns, namely the idea that the surgery couldn't be "undone" if there were problems (he told us this was not true - while it is generally not "undone" because the person really needs it, a Nissen wrap can be taken down if necessary).
We also discussed things like gas bloat, wretching, and other scary, unpleasant side effects that can come with a fundoplication. Nolan is at risk for gas bloat, for a couple of different reasons:
1) He uses a C-Pap to breathe at night. This forces air down his throat, and sometimes that can get forced into the stomach.
2) He has delayed gastric emptying
Since Nolan is "complicated" and a little on the small side, it is common to insert a gastrostomy tube (g-tube) when the fundoplication is performed. If his emptying becomes a problem after surgery or he gets horrible gas bloat, we will be able to vent his stomach to release the trapped air (or stomach contents, in the case of delayed emptying). The g-tube can also be used to deliver medication and nutrition, if needed.
The type of gastrostomy tube that will be placed is called a "Mic-Key." A lot of people simply refer to these as a "button" or a "mickey." It is a small, skin level device that won't interfere with the little guy's daily activities, and if he doesn't need it we can have it removed.
The surgery (for the fundoplication) is done laprascopically, though sometimes the surgeon has to convert to an "open" procedure. From my basic understanding, this has a lot to do with visibility and how the liver covers the operating site.
The surgery requires a 5-7 day stay in the hospital following the laprascopic procedure, and a 7-10 day stay for an open procedure (we're really, really hoping the surgery can be completed laprascopically). While he's in the hospital, I will be trained on g-tube care and how to replace it if it should fall out accidentally. This is a big issue because our local hospital doesn't treat kids and lacks the necessary supplies - and a tube that falls out has to be replaced immediately.
If Nolan doesn't need the tube for venting and is eating well, the tube will be removed about 3 months after the operation. Removal is simple - you simply deflate the retention balloon, pull it out, and stick a bandaid on it - the wound heals in about 2 days.
There is also a restricted diet for a while and the recovery does take some time, but once everything is settled he should be free from reflux-related problems.
In the meantime, we are having his GI medical records sent to Strong Memorial. Since Nolan is "medically complex," the surgeon wants to be absolutely sure that there are no big contra-indications to the procedure. Once he has all of the records and verifies that the procedure is safe, the surgery date will be scheduled. We signed the consent form in his office, so we are simply waiting for the records to get sent and reviewed.