Monday, December 8, 2014

On Thursday (12/4/2014) Zach had his mik-key g-tube placed. He had lost weight again and when the nutritionist from the CF clinic came and saw us in the hospital she said that this had definitely been the right choice for him.

The surgery went good. They ran into a little bump when they discovered that he had more stomach muscle then they expected (which caused a big smile and a "gun show" from Zach). Because of this he wasn't allowed to eat until they rechecked the placement of the tube, which meant he went for 40+ hours with no food what-so-ever, making for a very unhappy boy. Once the study was done and he was allowed to eat, he pigged out (chocolate milk, pb&j sandwich and a burger).

They gave him his initial tube feed Friday night, starting at 35ml an hour and working up to 95ml an hour (the rate he gets at home) over 10 hours. So this meant a 2nd night in the hospital for us (yes I stayed in the hospital). That first night he had some cramping with the feed, but nothing horrible, which meant we got to come home on Saturday.

His appetite since we have been home has been less than what I had hoped it would be. I expected him to not be hungry at breakfast time, at least for a while, but he hasn't ate much for lunch the last 2 days and that concerns me. I am sure his appetite will pick up once his body adjusts to the calories (almost 1500) he is taking in over night.

I know we are probably going to have a slight weight lose before he starts to gain. I was just hoping that it wouldn't happen. I know his body has to adjust to the new feeds and that his stomach will gradually stretch back out so that he has an appetite, I just hope it doesn't take too long.  I suppose if it does we can always talk to nutritionist and see about doing a bolus feeding or 2 during the day, but I don't want him to become dependent on the tube feedings. He is such a picky eater to begin with and I don't want him to start thinking that now that he has the tube he doesn't have to eat normal food.

I have opted to keep him home for this 1st week of recovery. I am sure it is going to be a long week and he will get bored and probably drive me bonkers, but I just didn't feel comfortable sending him to school with the tube so new. He will have a tutor coming in for a few hours a day to keep him up on his school work and he isn't too happy about that, but I refuse to let him fall behind in school.

All in all I still believe he made the right choice to get the g-tube and I do believe in the long run it will be a great benefit to him and his health....

Tuesday, December 2, 2014

Well the day we have been waiting for 2 days off. Zach made this decision and I am so proud of him for it. By this time Thursday he will be resting in his hospital room the proud new recipient of a g-tube.

Many people have questioned his decision to get the tube placed now. I am proud of him for coming to the conclusion that his weight battle may never end without the help of the tube. It was an extremely grown-up decision for a 13 year old to make.

I can't imagine how hard it is for him. He has this "rare" disease, that no one in our family has. He knows 1 other person with CF (a girl his age in his school). He is almost 14, struggles to maintain a weight of 80-85 pounds (most kids his age are at least 100 or better), he is barely 5 foot tall (shortest boy in his class). He's active, but now that puberty has started being active and having trouble maintaining or gaining weight is really affecting his activity tolerance.

 He often feels like he is battling this alone. I don't know how many times I have listened to him fight me on treatments because "you don't have to do them, no one else has to do them, why do I have to???" We hate this disease so much. Some days it seems like its a never ending battle. But then there are those days that it feels like we are finally beating this. Those are the days you live for. Those days when your kid just does his treatments without a fight, takes all his meds, doesn't hate life because he was dealt this shitty hand. The days when he stands up and says "YOU WILL NOT DEFEAT ME OR DEFINE ME". Those are the days we live for.

I am proud of him for deciding it was time to get the g-tube. I am proud of him for finally taking control of his health and starting to make decisions for himself.