A Rant

Its been a long week. Its been a long couple of weeks. Drew got his first cold about 2 weeks ago and we're still struggling through it. Hes taking antibiotics and we've increased his CPT to 3-4 times a day, after using a nebulizer and Albuterol and saline. It takes close to an hour to do all of that...3-4 times a day. And the poor guy is only awake for about 2 hour at a time. He takes between 15-30 min to eat, so when we have to add the CPT process he simply wakes up, eats, takes meds, gets his chest therapy, and goes back to sleep. I hate it.

I've spent hours (yes, literally hours) on the phone with insurance this week trying to get everything with our mail order pharmacy sorted out, and I still don't think its right. There are 10,000 things I could have used that time for and I'm bitter that I'll never get that time back.

I talked to another CF mom and another friend with CF (just turned 49!!) this week about my obsession with germs lately. I just can't seem to figure out or be settled with how i'm going to deal with germs. I wanna ask people to wash their hands when they come into my house. I wanna ask people not to touch him when we're out in public (which is very infrequently). But I haven't gotten that comfortable with that yet. And I think its because I don't want people to think hes weird or different or that there's something wrong with him. But I also don't want him to get sick. There is incessant hand washing and sanitizer use. Our doctor said that since we are his handlers, our hands are most important right now, but when he starts crawling that we will just need to try to make sure his toys are clean and we wash his hands a lot. I know hes gonna get sick, and colds and stuff are in a way good for his immune system. He needs to build up some resistance. But this routine of caring for him when hes sick suck. And I'm sure that this isn't as bad as its gonna get. But they gave me some good perspective and told me that I will figure out what works for us and I know I will. I'm just ready to know how its gonna be

I shouldn't complain. There are a million people who have it a lot worse than I do. But I just wanna complain. I'm tired of this already and its just starting. I'm tired. I'm scared. I'm annoyed. I'm broke. I'm hopeful. I'm scared. I'm hopeful.