Lilly and I spent last weekend our local Children’s Hospital, The Stollery for pain issues. Lilly’s chronic pain was higher than usual and she was admitted to try to get better control. The x-rays showed that nothing has changed and the pain was muscular. Lilly also started a new med while admitted and did not react to it!
During her admission I noticed something…Lilly had regressed with her feeding and swallowing. Textures that she once was able to eat no problem has became a struggle for her. Upon release from the hospital I have been experimenting with her textures and have noticed there was a regression.
This is alarming because usually Lilly doesn’t regress with her eating.
Luckily I had a call in with her dietician who we have a long history with. (She’s been with us since Lilly was 6 months) The dietician put Lilly back on a soft food diet with options, and a calorie count. With a follow-up appointment next Tuesday. 🙂 The dietician’s biggest concern is Lilly getting enough nutrition before the surgery?
G-tubes and N-tubes discussion isn’t something new for us
Lilly as a baby and toddler was border line needing a G-tube but she was able to learn to eat. It took three years to get her to master different textures and she rocks them know. As she heads for surgery the major concern is will she eat enough to sustain her new activity level. For her the g-tube would be away to top up her calories.
There’s always pros and cons to every decision you make.
I can see the pros with getting a G-tube for Lilly. With the fact she can regress so easily it is one way to ensure she is getting the right nutrition at any stage. The Con is in someway it feels like defeat. For so long we worked hard to stay away from the G-tube. It feels like a step back wards.
On top of managing Lilly’s medical needs, (tons of phone calls to professionals) I got a letter in the mail from Aids To Daily Living, (AADL) about Lilly’s old wheelchair. It was actually a finally notice to return the wheelchair or they would take me to court. The thing is I got the first notice the day I dropped off the old wheelchair and picked up the new one.
I just assumed it would be taken care of.
I called AADL on Thursday morning and was instantly put on hold. While on hold I called the vendor and found out there was a miss communication between vendor and AADL. That the vendor will fix it. That issue was fixed but know I had the issue of the cost share to clean up.
AADL Cost Share
AADL has annual cost share that you pay for equipment which is 25 percent of a product unless it succeeds 500. Once you succeed the 500 you don’t pay any more for the rest of the year. Personally we have paid the 500 every year since Lilly was a baby. The issue is my status hasn’t been changed since I maxed out.
Once I got a hold of someone I got transferred to another person. At which point my kids started fighting and once I came back to the phone no one was there. Frustrating is the understatement. I don’t have time to spend being on hold for that long.
Right now I am barely keeping on top of basic day-to-day plus medical stuff.
The fact is I am getting tired of agencies that are supposed to be assisting us giving us the run around. When you submit things it takes months to get approval, or you need to advocate consistently to get the things your child needs. If there is a misscomunication you need to jump through hoops just to talk to someone.
If you have a story similar to mine I’d like to hear it.