Wednesday, January 18

Hi,
We haven’t had much to report this past week. Things are fairly the same as far as Ryan’s progress and the pain management. He is still in a lot of pain and we are trying to control it with medicated patches rather than taking so many pills. He’s still taking his share, but the patches have helped in cutting down on the “pill schedule”. The therapists are please to see his high level of function both physically and neurologically. It’s difficult to know if the little differences in Ryan are from medication or actually caused by the brain trauma. Guess we won’t know that until after the flap goes back in and he’s cut way down on all the medication. Because he is not feeling well much of the time, it has been difficult for him to complete the “homework” he is assigned. We see a huge positive difference in his demeanor when he has visitors or his therapists are here. Please, don’t be afraid to come visit.

We are frustrated and in the middle of working with our insurance to determine where and who will do the bone flap replacement. Originally we were told by our local HMO representative that Dr. Beamer (the Neurosurgeon who did the craniotomy) would be the one to do it. We didn’t do anything about getting a Neurosurgeon down here because of what she told us. NOW – at this late date - we’re told Dr. Beamer can’t do the surgery – it isn’t covered – and we have to have someone here in San Diego do it who is affiliated with our “group”. Eric and I don’t understand any of this but are trying to keep an open mind. I wouldn’t have a plumber come in and start a plumbing job, then have someone else come in and finish it. Yet they want us to do this with our son’s skull/brain? We’ve never experienced a problem with our HMO because we’ve never had anything catastrophic to deal with before. It would make so much more sense if HMOs would drop the “group requirement” when dealing with something catastrophic. Can you tell I’m venting? To make matters worse, the Neurosurgeon we were referred to here isn’t available for a consultation for 3 weeks so they’ve chosen another Neurosurgeon for us to see next week. We’re getting pot luck – whoever’s available first. This really makes us feel comfortable??!! I don’t think they understand – every day they delay, is another day of pain for Ryan. There’s so much more, but I won’t get into all of it!

I’ll try to be better about postings. I know many of you are checking the blog, but not sending messages. If you’re up to it, please pass on your thoughts. They really help keep us going.

Thank you again and again for your prayers and encouraging words. It must be hard being in your shoes because you don’t know what to say. Please don’t worry, we just love hearing from you and Ryan loves seeing you.

Love,
Debi