So this might turn into a mini rant so if you read this whole post I am quite impressed.
Today was a baaaad clinic visit. Medically, mentally, and physically (well, for Luke anyways). We have been keeping a close eye on Luke's weight and I know that I have mentioned it before on here. I have been feeding him super high fat and calorie foods, giving him 3 scandishakes a day, and always giving him milk before naps, bed, and with dinner. However, I knew his weight was not changing. I had set him up a profile on Wii Fit and have been keeping track of his weight. He still can't seem to pull past 25 lbs.
I was hoping that the same thing would happen at clinic that has happened before. They tell me to keep giving him high cal/protein/ fat foods and scandishakes. They didn't do that. Eileen came in very serious. I hate when people are serious. She is very concerned that Luke has some underlying issue that is going on that she can't put her finger on.
They think he might have diabetes or Celiacs. I know that Celiacs is treatable and that if kept on a the right diet totally manageable. It's just frustrating to think that Luke has to deal with CF and a digestive issue. Besides,(most) gluten free foods taste nasty and I feel for the child! I did gluten free diet for awhile and it was not yummy!
I have a feeling that he doesn't have it though. Which wouldn't exactly be a good thing.
If all the blood tests they did today come back negative Luke is more than likely getting a g-tube placed. I don't know how I am going to manage that. Remember, Luke pulls PICC's out. I have no idea how he will handle a g-tube. Not to mention he is in a big boy bed and all I can imagine is him getting up in the middle of the night and being attached and pulling it out.
Luke has had a total reversal it seems. In the beginning he gained like a champ but he had serious lung issues. Now it's changed and Luke's lungs are extremely clear but he hasn't gained weight in a year.
He looks and acts sooo normal. He's happy and loooves to eat. The kid can plow through a McDonalds Happy Meal quicker than I can eat a Big Mac and that's pretty fast!!
I am a control freak. Pure and simple. I know it. Dan knows it. Most people who meet me know it. I am having issues dealing with the fact that I can't control Luke's weight gain.
I see other CF kids seeming to do fine. No g-tubes, no ports, no extra 'underlying' problems. I feel like Luke got a raw deal.
What kills me is that I can't help him. I have tried and I failed. I feel like the biggest failure ever. I can't even make me son gain weight. I pump about 2500 calories into Luke every day. 1800 of those are from Scandishakes. It's impossible for me to give him any more calories. I make the fattiest meals, I give him the fattiest drinks. Nothing works.
I don't know. Maybe none of this makes sense. Maybe I am not getting my thoughts across. I never have been linguistically gifted.
I am just overwhelmed right now.
This could all be getting to me because I have a cold and am exhausted. I think that I have been pushing myself too hard but unless I do something, it never gets done. Dan tries to help but he has work responsibilities and we REALLY need every paycheck so I don't want him to compromise his job in any way.
It's stinks because even if all the tests come back negative I know that he will probably still have to undergo surgery and deal with all the crap that a g-tube brings.
I don't even know what to think. What do I hope for?? Celiacs?? Diabetes?? G-tube?? None of them sound good.
I just wish it could all go away.
Seriously, we need a stinkin cure. Like now.
