The last time I posted about Will's eating, it was to tell you that we had been to the doctor who told us that Will's lack of weight gain was becoming a serious concern. He challenged us to assist Will in gaining 4-5 lbs in 4 months, or Will would need to get a surgical gastric tube (herein referred to as a g-tube).
We left that appointment with the feeling of a strong kick in the pants. I proceeded to buy butter crackers to smash up and put in Will's vegetables, and Lorne Doone cookies to smash up and put in his fruit. We made it a goal to use up one full tub of Benecalorie per day, and tried to get Will to take 25 ounces of the special high calorie Boost liquid. Anything with calories and fat... as much as we could put into his system.
He responded with vomit. Lots and lots of vomit. That was some really expensive, calorie-rich vomit on the floor.
We found out around the same time that Will had a sinus infection, which was causing a lot of his nasal congestion issues. They prescribed him 21 days of Augmentin, which proceeded to cause more havoc on his little tummy. When that was done, everyone in our house got colds. This meant that Will had a lot of extra snot in his body, which meant a lot of extra gagging.
Honestly, we started to wonder if he was actually trying to make himself sick. It wasn't a question of "if" vomit was an everyday occurrence... it was a question of how many times did he vomit. It was frustrating and sad, and lead to some very short tempers around here. To make matters worse, we were only able to feed Will small amounts of formula during this time, which meant he was waking up every 2 hours, needing to be fed. Lots of vomit, no sleep... bad.
At a check up last week, we learned that Will - not surprisingly - had lost weight in the past month. This was another type of kick in the pants for us. Maybe fighting Will getting the g-tube wasn't the best thing for him. He clearly wasn't going to gain 4-5 lbs in 3 months, considering he has put on less than 2 lbs since January.
We started asking doctors, friends, acquaintances who have children with cerebral palsy, and our feeding therapist for their advice. The resounding advice was to proceed with the g-tube. There was no point in waiting the 4 months that we were "given" to help Will gain weight. The other resounding point that all of our sources of advice made was that most parents, when they finally get to the decision to go forward with their child's g-tube, ask themselves why did they wait so long to do it?
We basically determined that the last thing standing in our way was our own pride and stubbornness. This is kind of hard to say... but we knew that a lot of children with CP had g-tubes and we were so proud to be able to say that our's didn't have one... that he didn't need one. That we were beating the odds, doing more than expected. Part of coming to peace with this decision has been admitting that I feel like a failure for having Will be so underweight. I know that isn't logical. Its just how I feel. I know how much effort we have put into feeding him... how much thought, and imagination, and time and patience. I know that we have done everything we can. I guess I am just one of those moms who feels like I should always be doing more.
On a side note, when we sat down and looked at a calendar, the 4 month window for Will gaining weight ended squarely on the eve of Will's transition from home day care to a day care center. We really want to eliminate as many transitions as we can for the boys, so starting day care, then pulling him out for surgery and recovery, getting used to a g-tube, and then starting day care again seemed like a lot of extra stress for Will.
So we had our pre-op appointment this morning for Will's surgery. We met with the surgeon and nurse practitioner who will be doing Will's surgery and follow up care. They walked us through the procedure - basically they will stitch Will's stomach to the inside of his abdominal cavity and create a surgical opening between the stomach and the outside of his belly. They likened the g-tube to a body piercing! There will be a silicone "button" on the outside of his belly, where we will attach a feeding tube at night. During the day, he will continue to feed by mouth. Night time feeding by tube will just be to make up his calorie deficit for the day.
The surgery is scheduled for Tuesday June 9, and we will have 3 days in the hospital afterwards to ensure that Will is tolerating the g-tube, and so we learn how to use the pump, place the g-tube back if it falls out, etc. It is really a strange feeling for us to know in advance when Will's surgery is, and to know what to expect as far as time in the hospital afterwards. All of our surgeries thus far have been in emergency situations, and typically surgery is in the middle of the night.
The g-tube could be a a short term solution for Will's feeding problems, depending on how he does with his oral feeding over the next year or so. If he starts eating like a fiend, he could be a little fatty in no time. In the very near term, though, we should see a change in Will. He will probably sleep better through the night because he will be getting all of the calories he needs. He will probably have more energy to thrive and develop and play. His over all mood will probably increase because he won't be as hungry or tired as he has been.
All in all, this is a good decision for Will and a good decision for our family. It has been a long path. Not that we're giving up on one day having Will eat everything by mouth again... just that this is a big decision, 2 years in the making. We've fought it for so long, but now, having spelled out how we got here... I finally feel calm.