Thursday, January 28, 2010

Annual Clinic visit and results

Samuel had his annual CF clinic visit, which seemed much like a routine visit, on Tuesday.

Just a little background information about me, Samuel's mommee. When I haven't slept well, any and all coping mechanisms fly out the window. Knowing this, it was not good that I didn't sleep well Sunday and Monday evenings. I was tired on Tuesday. Monday evening I kept thinking "I need to get rest. Tomorrow is going to be hard." But did I get good rest? NO! Of course not!

Some other background information: We've been struggling with Samuel's weight (or lack thereof) since he was probably about 9 months old. It was then that we started altering expressed breast milk to add extra calories. We've always been aiming for the 75th% as far as his height to weight ratio, but have only come close at one visit and that was about a year ago.

You may recall his study visit (not a normal clinic visit) revealed a 0.6 pound weight loss over a few months. This got me super busy trying to make up the difference before our clinic visit less than 2 weeks later. While we did add a few ounces, he weighed in at 26 lb, 11 oz, we didn't make it back up to his previous weight of 27 pounds. This brought his height/weight ration percentile down to the 10-25% range.

While this weight plateau is normal for a child without a chronic disease, it's a cause for concern in someone like Samuel. We've been adding as many calories to his food as possible, encouraging him to eat as much fattening cheese, milkshakes and pizza as possible. I can only imagine how he must feel after eating such heavy food all the time. His "super milk" alone makes me queasy. 4 ounces of whole milk, 4 ounces of half-and-half plus a packet of Carnation Instant Breakfast...there is nothing refreshing about chugging half-and-half.

In the 2 years we've been taking Samuel to clinic, we've learned where we stand on his weight by how quickly the nutritionist would come in to see us. It should have occurred to me after we were kept waiting for about 45 minutes that something bigger was going on. But, again, the lack of sleep thing...

Samuel's doctor, Dr. O, came in and apologized for keeping us waiting. Our conversation flowed as normal for a while. Then we discussed the weight issue. I really respect Dr. O. He's never used scare tactics to influence our decisions. So I was pretty open minded when brought up the G-tube. Remember, lack of sleep and I can't cope. I started to cry. I knew this conversation was coming. I just had a feeling that today would be the day since he would have a weight loss.

However, as the nutritionist put it, it's an issue of volume. He needs about 150% of the "normal" caloric intake for a boy his age but he doesn't have as much room in his stomach. That means, if a 2 year-old without CF needs 1400 calories, he requires 2100, just to maintain. When he gets sick, (notice I didn't say "if") he will not eat as much, meaning he will lose more weight and we will be further behind.

To me, a g-tube is a last resort, although I know it's not supposed to be. It's just hard, knowing that as much effort as I put forth, it's not enough. It's heartbreaking, really.

It's also heartbreaking to try to convey the concern to someone who doesn't understand. It's not an issue of eating. Samuel eats like a normal 2 year old. He eats when he wants, and when he wants, he can eat a LOT. He drinks the "super milk" much as 16 ounces of it a day. I make special food for him all the time. He eats cheese with every meal. Milkshakes about 3 evenings a week. I can't make him eat any more.

Yes, he is very active. I know this burns a massive amount of calories. But I will not discourage his activity because I know it is vital for airway clearance.

For right now, it's still our decision but we are being encouraged to strongly consider the idea. If we go ahead with it, it will not be a temporary solution, just like this isn't a temporary problem. He will likely have the G-tube for many years, likely until his teen years or later. Of course, it will be changed to accommodate his growing body, probably about once a year.

We are still considering the idea, trying to get used to what it means to our family and just how much it will change things, better or worse. Part of me still can't believe this is even being considered. It's a lot to wrap my mind around.

Thanks for your continued thoughts and prayers.

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