Anytime you put a 7 year old in a hospital and expose her to numerous tests and procedures as a mom you know your in for heartache. But with CF its a necessary evil and one that gets more frequent as they age.
It's hard for me to keep those thoughts out of my mind, you know the kind:
-have our best years passed us by?
-what will her future look like?
-when will she know what she's dealing with?
This stay we learned that Ayla is doing very well, she basically got a full work up. Ultrasound, EKG, chest xray, bronch, ENT check up, and pft...and all of these tests were normal. Her liver and pancreas looked perfect which are major concerns. Her Dr. Is still concerned with the amount of illness' she's had this past year, therefore she is recommending homeschool again. For me this is pretty scary. I feel like I'm unable to do all that's required of me at times. I want my kids to have the best of everything and homeschool is quite challenging.
I know I will make it work, and figure out what's right for us. But it's a daunting task.
During our stay I spent some time in ICU since that's where the bronch'd over the weekend. Wow, that is a hard place to be as a parent. I could roam the halls hearing the vest's shaking the CF patients lungs. I tried to keep my head down but you want to look and it's so hard to see these children lying there, almost lifeless. One appeared to be post transplant.
Another instance when we went to have her lung function test done, we had to wait until the room was clear. A teen came out in a wheel chair her iv pole in tow and face masked. I knew she had cf too. She didn't make eye contact. She seemed so sad. She had brown hair, I couldn't help but wonder if this was The grown version of Ayla.
It became overwhelming and I excused myself to the bathroom so I could "lose it" in private. In those instances I can only pray for help. I need strength and I can't make it through on my own. After a few minutes I went out to cheer Ayla on for her lung function test. She needs me to be strong, and I need her to be a kid. Two things that in this life are far harder to come by than I ever imagined....