Tuesday, March 1, 2011

Feeding Tube for Bryson (G-tube)

At 2 months you can see the difference between the two babies. They were only about a pound different at the time.
 Bryson is a little guy. He always has been. I'm pretty sure it's because of his Cystic Fibrosis. We have fought and fought and fought to get some meat on the kids bones every since he came home. Well actually before that even. They worked really hard while he was in the hospital as a new born too. The doctors have been telling us off and on to consider a feeding tube for him. We, as his family didn't want it to end up there so we did EVERYTHING in our power to get him to eat. He was on a special formula called Pregestimil. Its a high fat, pre-digested formula. It helped for a little while, but not long enough so his dietitian had us up the amount of powder to water to make it higher in calories. He grew slowly, but he grew. (through all of this, we were needing to take him to the Dr every week to be weighed!)
Here he is at 2.5 months. Such a little thing.
 When he got old enough to have solids we had to put butter in his meats and veggies and heavy whipping cream in his fruits and cereal. When his weight gain would slow down we would add more butter and cream to his foods. He got sick of this so we were told to add even more powder to water for his formula. It was 5 oz of water and 4 scoops of powder. That makes the bottle 30 calories for oz, which is the highest they could go with formula.
Almost 4 months old he was a little over a pound different.
 So we decided to start giving him Pedisure and he really liked the chocolate and it was a nice change. We would also give him cheese, cookies, french fries, cake, cheese puffs, hamburgers with mayo and cheese, anything and everything we could think of that was HIGH calorie, he got it.
 It still wasn't enough.
He is such a happy little guy!

So we went back to Doernbecher a few weeks ago and they put him on a Kids Boost Essentials. This stuff is 45 calories per oz, they told us to stop his formula and only give him the boost to drink and offer him anything and everything that is fattening to us. 
Bryson ended up getting sick, we're not sure if the boost made him sick or if it was just the flu or what, but he ended up VERY sick last week and was throwing up EVERYTHING so we had to stop the boost. We had a clinic visit yesterday and he lost almost a pound! We don't have a choice anymore. Bryson has to get a feeding tube. Unfortunately, that means another surgery for my little man. We have our initial consultation with the surgeons next week.

 I have very mixed emotions about this. I know in my heart that he does need this and I know he will get bigger and hopefully reach the 50% like Bridgette. But I can't help but feel like a failure too. I hear about and read about so many other CF babies that don't need this, or at least not yet. Am I missing something? Is there more I should be doing to help him gain? It's just such a weird thing. I fight with my weight, but at the other end and people say, " Wow, I wish I had that problem"  If only you knew! I personally know what it's like on both ends of the spectrum now. I wouldn't wish this problem on anyone. People don't realize how unhealthy it is to be so little. Of course we all know that being obese is a health risk, but being malnourished is too. Right now, Bryson isn't even on the growth chart and is considered "failure to thrive".

The reason this is such an issue is because Cystic Fibrosis is not only a digestive disease but a lung disease too.  When the kids don't grow, then their lungs can't grow and when the lungs don't grow properly in the early years it sets them up for more issues later. And that is where the real problems start. I guess the bottom line is, I would rather my son have a feeding tube now, if it can (hopefully) prevent him from needing a lung transplant later! 
Breathing treatment
 As a side note... When Bryson turned a year old that is when he was given the OK to have the boost. My Insurance plan kept telling me that they wouldn't cover it unless he had a feeding tube. This stuff is expensive!!! Bryson's dietary requirements were four 8 oz boxes a day = 120 a month = $357.88 a month.  Of course I can't put a price tag in Bryson's health, but I knew that there had to be a way for the Insurance company to see it my way. I fought with them for days about it, well one phone call I happened to get a really nice, understanding rep that told me that there was a loop hole kind of thing.  If we could get our Dr. to send in documentation showing that he had "Severe intestinal malabsorption issues, he was being followed by a registered dietitian and his main nutritional intake is from the boost. They would consider covering it. So I called the office and let them know and they were happy to do this for us. A few days later I got a call from the office saying that insurance was going to cover it. I also found out that regular pharmacy can't do fill this RX tho, it has to come from the specialty mail order pharmacy. But we did get it figured out. *happy dance*
I also had to fight with the insurance company for days to get them to cover his TOBI.  So to all the CF parents that are having issues with insurance companies not covering things, FIGHT it. Of course they don't want to pay, but if you push it, chances are, they will cover it in the end. Be a strong advocate for you kiddo, If you don't, who will?

                    Thanks for reading!!

No comments:

Post a Comment