Friday, July 17, 2009

Long Weeks

Will woke up Monday with a sore throat. No other symptoms, just a sore throat...and every dysautonomia/POTS/mitochondria symptom out there. Called the doctor...the nurse said she would return my call on Friday. Um, is there a sick appointment we can make? I have a non-functional kid here. Nope. So Dr T called me this morning and promptly set up a protocol for the next time. No more waiting for four days for a return call. (She was not happy with said nurse.) :) After talking for about 15 minutes, I was grateful that I had done so much reading. I'm finally getting some level of understanding so the time spent on the phone was really productive!

While discussing Will's situation, we decided that it was time to start a medication to help support his blood pressure which drops dramatically when he has a "mito crash". (It was registered in one dr's office as 60/38 and he was still conscious.) I have a brand new sphygmomenometer (bp cuff) and stethoscope since both of mine died a couple of years ago. We have to take his bp every morning. When there's a drop, off to the ER we go for fluids. Hopefully, between fluids and a new medication, we'll be able to keep these crashes from occurring. Hopefully these lovely ER runs won't occur too frequently. If they do, then they'll put in a permanent port for him...not something he's thrilled about.

On that note...we are still fighting the insurance company for coverage of the high dose CoQ10. It's been a very long week with multiple phone calls...we should have an answer early next week.

As for the rest of life... I leave at 330 in the morning (4 hours from now) to take Andrew to the airport for the Belize mission trip. He's totally beside himself.

Will and I are preparing for Toledo. We leave a week from Monday. Please pray for strength for me. We are so blessed with the loan of a vehicle and with a huge financial gift which makes all of this possible...and amazing friends who are willing to keep the other children.

We have appointments Sept 23 and 24 in Cleveland at the mito clinic. We apparently are going to become really familiar with Ohio!

I'm off for a few hours of sleep so I can drive the taxi to Richmond.

Thank you for praying for us.

No comments: