Brianna called; she's in Nashville with her best friend for a few days. I didn't want her to go since she's been sick, but I also realize she's 18 and needs these experiences. She's missed out on so much being sick, it's time for her to learn to manage her disease while living life.
Anyway, the doctor called her and said that a lot of the kids in their specialty clinic are having bad flare ups right now due to the extra high allergen counts in the air. They are calling her back this afternoon to discuss changes in medication or if a feeding tube is going to be reinserted.
Brianna told me she has slept 2 hours since yesterday at 7 a.m. since they decided to drive straight through (ugh, youth! LOL), they mainly eat fast food (double ugh!), and her pain is high but she took extra medicine (I will not resort to crazy mommy mode here). They booked a hotel and are now sleeping for a few hours before heading back out tonight.
This is out of my control. She'll be 19 in a few weeks. She wants these experiences. But as a mom who has dealt with her disease for a very long time, I know she's setting up the perfect storm for a long inpatient stay and a lot more medical interventions. But as her medical team said once she hit 16: she knows her body well enough to know if she's willing to suffer the consequences.
I also worry about the financial side of this. Brianna loses her secondary insurance next month. Her primary insurance does not cover all of her medicine/feeding tube supplies. The feeding tube supplies/formula/pump rental can easily go to $3000 a month. That's not covering co-pays for medicine, inpatient stay, x-ray, etc. We are looking into a specialized state insurance for those over 18 who have chronic diseases. She may qualify for a special type of disability (no monetary payments, just insurance) but since she's an adult, she has to do it. She always seems to forget. UGH!
18 is truly an interesting year. They're grown but still a bit childlike.
Anyway, today is still good but I really wish I wasnt trying to do all of this alone. Her dad completely ignores it all and leaves it up to me. I work all this week starting tomorrow and really don't want to be distracted thinking about all of this.
Maybe it's selfish of me, but I'd just love one job where I wasn't also taking care of sick kids alone. I guess that is too much to ask. So as usual, I balance everything alone and hope for the best . . . .