G-tube update

I'm finally getting around to updating about how my g-tube is working. I had a peg-tube placed on April 6th. This procedure was done as an outpatient procedure and was one of the worst experiences I've ever had. (I'll spare you the details) They placed the peg-tube in first and then after the site has healed, then they change it out for the g-tube button. Here is a picture of what the peg-tube looks like: (sorry if this makes you queasy....the gauze around it helps it to not look bad...I promise!)
Healing from this procedure was an adventure. The GI dr. said that I would only be in pain for about 2-3 days...but when you have CF and you cough all the time it takes a lot longer! The first couple of days I could hardly move with out being in pain. Finally after 2 1/2 weeks, it didn't hurt when I coughed. After about 3 1/2 weeks it finally didn't hurt when my tube was touched or moved. Constantly dealing with a 10in. tube hanging out of my stomach was very interesting, but I quickly learned how to deal with it. Hooking up to and flushing the tube was also lots of fun. The tube constantly had some of my stomach contents in it and if we were not careful, they would come "spilling out" of the end of the tube when we opened it to flush or connect the tubing for my feedings. (gross I know, but it's part of the package when you get a feeding tube) Another adventure was that the first couple of weeks I had to sleep at a 30 degree angle. This was because the formula can cause reflux problems and could also end up in my airways. I didn't mind at first because it hurt to lay flat. My doctor gave me the go-ahead to sleep flat after a few weeks, as long as I didn't have reflux or breathing problems. Thankfully I tolerate the formula well, so I can now sleep flat and on my side. :o)

This is the formula, or medical food that we are using. In one can it has 375 calories, 14g of fat, 47g of carbohydrates, 16.9 g of protein and has lots of other vitamins and minerals in 1 can. We started off with 2 cans a night with the intent to work our way up to 4 cans a night. When we started to look up information about getting a g-tube and the formula, I had a heart attack with the cost of this stuff. Of course, our insurance would pay for the procedure and all of the supplies needed, but not pay a penny towards the medical food (unless I was under the age of 2!). Peptamen 1.5 is one of the most expensive ones. It is around $219 for 24 cans. So you can imagine how expensive it would be if we did 4 cans a night....ahhh!!! Thankfully I started to gain weight with using 2 cans a night in 1 1/2 weeks, so my doctor didn't want to increase how much we were using because it was working and he wanted to help save us money. Soon we will be switching to a different kind of formula that would still have the nutrients that I need at a fraction of the cost. I'm not sure what we will be using. We got samples of several different formulas this week and we'll begin seeing what I tolerate before we completely switch.

Here is my new "buddy" at night. The pump is small and very quiet. Unfortunately the tubing with the bag is not very long, so the pump has to be right next to my side of the bed. It is a little annoying to have the feeding tube tubing and the oxygen tubing all night long, but I've slept with oxygen at night for over 9 yrs and have been on IV meds too many times to count, so I am use to all of the tubing.

This is my "4th meal". Curtis has taken great pride in preparing my tube feedings each night. He says that he now "cooks for me everyday, making me a gourmet meal every night that has complete balanced nutrition" Dork! All he does is shake up two cans, dump them into the bag, prime the tubing and I'm all ready to go. I'm so glad that I don't have to taste this stuff. It smells gross, even the vanilla flavored formula. So while you could say that I eat all night long, I prefer to think of it as digesting all night long. Eating is when you put food into your mouth, chew, swallow and then digest.

How is my weight? I gained 7 lbs in 5 weeks! I'm now up to 120lbs (which is 10lbs heavier than my lowest weight this year!) Ideally we would like me to gain another 5-10lbs. Since I'm short, my ideal body weight is around 125lbs. I would like to try to get to 130lbs at least. I have been there before, and I would like to be at the higher end just so that when I do get sick and lose weight, it won't be too bad. We are still doing just 2 cans a night. Since it takes 7-8 hrs to get my 700 calories, I wake up hungry, which then translates to me eating more during the day. I didn't realize just how much I was stressing about trying to eat everyday before. Now I no longer worry about it. I eat when I'm hungry and when I want to. I have more energy and I feel better. Best of all, my clothes are starting to fit again! Even with only gaining 7lbs, people are noticing. Many people, especially those at church who've been watching and helping us during all of this, have said how much better I look. :o)

So even though it's been painful and we're still working out some small problems as they come along, it was definitely worth getting the feeding tube. I recently got my peg-tube converted to the button, but I'll wait to share pictures of how that looks after I've healed a little more.