X had his gj tube changed today and it went beautifully. It could not have gone any better. I didn't tell him what was going to happen until we got there. It's hard to know when to tell him what procedure he is going to have. The last time his tube was changed, it was very traumatic and I didn't want him obsessing about it and working himself up. He did ok when we told him at the hospital. Definitely scared, but not hysterical and he was still able to have fun while we waited. The nurses and anesthesiologist really pushed hard for us to give X some Versed. I mean, they really wanted X to have the drug. We really felt X didn't need it, and we almost caved, but we stuck with our initial decision. It was the best decision.
X did amazing. I am so proud of that little guy (well, not so little anymore). It did hurt once during the procedure, and that was heart breaking, but it wasn't awful pain and he whimpered, but didn't scream, and the pain lasted a few seconds. Everyone was impressed with how well he did and one of the nurses who really pushed for the Versed admitted X did better without it. Instead of being tired and loopy after the procedure, he was able to hop off the table and "work the room" as soon as it was done.
The best part of the day was watching X after the procedure talking with the nurses. His chest was puffed out and he was so proud of himself. Then he looked over at me and ran full board and jumped into my arms and just clung to my neck. My heart just about burst. What an amazing boy (in my biased opinion).
N had a hard time. His poor tummy was a wreck from the minute he woke up. Too many memories for him I think. As soon as the procedure was over, he felt fine. its hard to know when to bring N and when to leave him home. He is more anxious when he isn't with us. Thankfully today was an easy day and a good day, so if he comes with us for something else he won't be as nervous. He was able to talk about it, which is good, but it breaks my heart. X's medical stuff has made affected him in a lot of ways. I also feel he is an amazing boy for everything he has gone through with X.
I cannot even begin to describe the feeling of relief I had when the procedure was done. I actually felt physically lighter. It was amazing. I knew I was struggling with anxiety about the whole thing, but I didn't realize how much I was struggling. I am hoping this is just the beginning of better appointments and the beginning of the end of this feeding tube.
We had our follow up appointment with X's GI doctor and nutritionist. We have a new plan. X will get 800 ml of formula for 9 hours at night and 4 blouses of formula during the day. He will get 200 ml of formula over an hour 4x a day. The blouses will go directly into his stomach. This will hopefully help him "get" the hunger-satiety cycle and help him figure out how to eat so we can wean him off the tube. This will also allow X to take a bath without having to be hooked up to his feeding tube. That is a big thing over here. It also means he can play after supper without having to carry around his backpack. Oh the freedom he will have!
The scary part about all of this, is that we tried this last year when he had the ng tube and that is when all hell broke loose. He basically threw up for almost four months. If he starts vomiting regularly we run the risk of X's oral aversions coming back. I am hesitant to try it, but its the best way to wean him off and if things don't go well, then we will know something else is wrong. I am hopeful things will go well, because so many other things are going well for X. We will start the bolus feeds in the morning. I guess we will get an idea how things are going to go then. For now, I am going to bask in the joy of today.
The nutritionist (who is new) was excited to see how X is gaining weight, but wants the weight gain to taper off or we will have an obesity problem. Good grief. For years we have counted the ounces this boy gains and now we may have to worry about the other extreme? I never would have thought we would ever have to worry about that.
So that was our day. It was a good day. I am thankful for that.
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