Saturday, June 22, 2013

Need RCF...mild food panic

Brayden is on a ketogenic diet.  Several items are measured very precisely to create his food, a formula to go into his j-tube.  This diet put him into ketosis...kind of like medicine for seizure control.  Before he started this diet, he would experience 12+ major seizures a day.  On the diet, he had 1-3 seizures a day.  Dramatic difference.

Part of Brayden's formula mixture is something called RCF carbohydrate free soy formula.  This is like liquid gold in our house...and insurance seems to treat it that way to.  We cannot order it ahead of time because it is a prescription.  We depend upon Brayden's medical supply company to get us this formula, as well as his other feeding needs.

I ordered his food supplies, in plenty of time for our vacation.  It did not show up.  So I called...I called for 5 days straight.  All days that it was supposed to be delivered but never came.

Finally, I was told that it was "out for delivery".  It was on the truck and would be at our house any time that day.  It was Friday.  We are leaving for vacation Saturday.

Our UPS and FedEx guys tend to be at our house around the middle of the day.  By 1:00 and no feeding supplies.  I call every hour to make sure it was coming. Every time I was told, it was on the truck to our house.  At my 5:00 hour, I am starting to panic...still NO delivery.  I must have the RCF carbohydrate free soy formula.  We didn't even have enough for the weekend, let alone for our vacation.

By 6:00, the medical supply company discovered that part of Brayden's delivery was damaged and being returned to them.  All I really need immediately is the RCF and thankfully that was not damaged and still on the way.  By 7:00, it is discovered that all the packages were damaged and being sent back.

We have no food for Brayden.  I try to overnight some by ordering online...cannot work because it is medical supplies.  I try to call the medical supply company but it is now Friday night and I only get the on call service...they are not helpful.  I start calling the hospitals and Brayden's doctors to see if they can get some at the hospital.

Did I mention we are supposed to leave for vacation in the morning and I don't even have enough food for the weekend, let alone our vacation?!

One doctor suggested we admit Brayden to the hospital so he can get the food until the medical supply company can get the food to us...um, no way.

Finally, Brayden's nutritionist contacted the hospital and put some aside for Brayden.

The only problem, it is put aside at Children's in DC.  We are not heading that direction.  Carter had a soccer tournament an hour south of DC and we planned to leave for the beach from soccer.  Instead, I had to leave soccer, drive into DC (DC in the summer with all the tourist traffic is torture, it was a looooong drive to the hospital) and the drive south again.

We headed to DC, Luke (my 8 yr old), Brayden and I.  I did not park the car, left the car with lights flashing to run inside.  I could not get Brayden's wheelchair out because it was packed in the car with our gear for vacation.  So Luke and I had to carry him (cast and all) to run inside to get the food.

Cans were waiting for us, we grabbed them and headed for the beach.

After that mess I was ready for vacation.

3 comments:

Courtney Cassada said...

good GRIEF! that is craziness!

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