Nothing Worse

There is nothing worse than when your child who was Cystic Fibrosis is not eating well and when he does drink down a milk/scandishake combo pukes it all up about an hour after eating all over your parents living room floor.
Yeah, this was how my day started.

Kyle has not been eating very well over the past 3 days now.  Picking like a bird at his breakfast, lunch, snack and dinner.  I've been banking on him getting his calories from his milk shakes, but not today.  We can kiss those calories good bye.

When he puked I just about started crying myself.  This disease is so frustrating.  This isn't the first time he's puked, actually it's not even the first time he's puked at my parents' house, try the 3rd or 4th time, but when he does I just keep hearing the words "feeding tube" in the back of my mind.

After he puked he started crying and choking on his vomit, so I rushed him into the bathroom and got him in the tub.  He calmed down once he sat down in the warm water and got some toys for him to play with.  I soaped him up and washed his hair and then let him play in the tub while my Dad cleaned the carpet.

I just hate days like these.

At least now he's taking a nap and will hopefully wake up with a good appetite.  I fear making him another "shake" and him drinking it down without eating any food.  I have a feeling they are just too rich for him tummy when he's eaten no food with them.  If only this kid would eat. something.

The CF clinic wants him back for another weigh-in in a few weeks.  I guess they could weigh him at the infant PFT appointment, which is scheduled for the 29th.  No sense making a separate trip down just for a weigh-in.

2 steps forward, 1 step back.  Every day with the crap-tastic disease.  I hate you.  I hate you, CF and everything you stand for.  A big FU to CF!