Tuesday, December 9, 2014

Today I kinda want to cry . . .

A month ago when we took Olivia in for her first routine CF follow-up at clinic post g-tube surgery, it was a successful appointment. She had gained over 4 lbs - for the first time ever in 3 months time. We were adjusting to life with the g-tube and things were as good as one can expect when cf is involved.

Since she had gained such a tremendous amount of weight and since she was tolerating her nightly g-tube feeds, Jeff and I both discussed stopping the use of the periactin, which is what we had been using for an appetite stimulant, because of the nasty side effects it was having on Olivia. It was mind altering, she was so irritable and it was becoming increasingly more awful for her with each cycle, so we stopped using it. After all, we had succumbed to our final option in trying to get Olivia to gain weight in going forth with the g-tube, it only seemed to make sense that since we now had it that we wouldn't need to force feed, or use the appetite stimulant any longer. We were told the g-tube would alleviate a lot of that meal time stress and weight struggle. 

I guess we never should have let our guards down. 

Here we sit a month later. 

The sweet belly that was beginning to stick out and show . . . 

the pants that we rejoiced in tossing into the "too small bag" for the first time ever no longer are . . .

the chubbier cheeks that were a visual to us of better health . . . 

the stress that was beginning to dissipate with each snack and meal . . . 

it's all gone.

This didn't happen overnight. Olivia has had little to absolutely no appetite at all since she got the g-tube. She doesn't want to eat and I sit her again, day in and day out, spending so much time encouraging her to eat more with little to no avail. I hadn't been pushing her as hard however because we promised her the g-tube would help and that we wouldn't have to make meal times be such a battle. It is painstakingly stressful and frustrating. I knew in the back of my mind, I never should have "relaxed", I wish I'd have listened. 

This is Olivia at the end of October . . . look at those cheeks - she weighed 43 lbs.

and this is Olivia on Thanksgiving Day. . . you can see how much her face has thinned out . . . she is down to 41 lbs - I want to cry. 

Gosh, darn-it! I am so angry and so frustrated and so hurt. Just when things are going okay and just when it seems like you can not let all things CF consume every single part of you and every single moment of every day, it all comes back to haunt you. 

I am so ticked that even with running this g-tube all night long, every night, until Olivia can no longer be convinced to be hooked up to it, the reward isn't there. Today when I weighed her, she's lost over 2 lbs in just a month and this is with using the g-tube every night, between 8 and 10 hours, minus 2 nights when we gave her a break and were visiting Grandma and Grandpa, which lets be real, shouldn't make a difference. Thus as I stated before, just a few weeks after the g-tube surgery . . . the g-tube isn't enough, she has to eat during the day to get in all the calories she needs and that's not happening. I'm at a cross road, do I reintroduce the periactin and live through hell for a week for all of us as Olivia has to deal with all that it does to her and the rest of us get lashed out at? Do I continue to not use it, push harder, add all the stress back in at meals and snacks and see if that is enough? Is there a clear answer?

I don't want to use the periactin and put her through all that it does to her when there is no guarantee it'll work and yet I absolutely will not sit here and watch as she continues to lose weight. We can't up her nightly feeds, she is at the maximum rate her body will tolerate and I for sure as heck do not want to run feedings through her g-tube feeds during the day. We can't force her much more without putting ourselves into a stress induced heart attack. There is no winning at this . . . I knew we would always have issues, I knew this g-tube was never going to be easy and was not a "cure" for the weight gain, and I know that cf doesn't get better, it only gets worse, but man oh man, this just stinks. 

On top of all that and more than likely adding to the issues at hand, Olivia also is showing signs of suffering from post nasal drip, as she tells me the "gagging" she feels makes her not want to eat, understandably so. Post nasal drip is part of CF sinusitis which most commonly shows up around this age - great. Thus a call to clinic is in order to see where to go from here. Thus the stress is back and my Christmas spirit literally just vanished, thus I feel the heavy burden again that CF constantly places on us. 

Oh how I wish there was a cure for CF.