Delays, Delays...

I have struggled to get to the keyboard and update here; sorry for the lack of posts. My hands have been busy helping Katie through this month -- perhaps I could order another pair of hands on Amazon -- that's not the first time that thought crossed my mind! Then again, they would never be able to keep them in stock; it would be the favorite item of ANY mom out there! LOL I will snatch a few minutes and try to catch up.

Thanks to Katie's aunt, we now have Katie's frightening acid reflux episodes more in hand. We have learned about foods to avoid, and she has gone from 2-4 episodes a day to just one every few days. What a blessing and relief that is. She still struggles with acid reflux during the day, especially after eating, but at least she is not fighting to breathe.

We continue to wait to get Katie to Primary Children's Medical Center. We were so very hopeful for a call last Tuesday telling us to bring her up, but instead the news was "there were no beds available". No room at the inn, so to speak. "Maybe next week." There have been so many "maybe next week"s and delays due to insurance issues, and delays with doctors leaving town. (By the way, Dr. S-N will be leaving town again here during the end of April: more delays.) Delays delays!!!! If Katie's mascot is a pink zebra, maybe mine will be Marvin Martian from the old Bugs Bunny cartoons... :-P 

All the while, Katie deals with unbearable nerve pain and a page-long list full of symptoms on top of that. It is so hard to watch her suffer while we wait. It is one day at a time, and very often one hour at a time. We keep up with her ridiculously ineffective pain medication (Tylenol and Aleve; really?!) and try to distract her the best we can. Katie has been dealing with nerve pain since last August. Last AUGUST. Hearing of another delay, and thinking of all that Katie is going through, my mom-heart broke while on the phone with the rehab manager, and tears flowed freely for most of our phone conversation.

The plan is to try to get her in "next week", and admit her to Primary Children's for a week. Perhaps because of my tears, they arranged to get Katie on Gabapentin right away; a nerve pain medicine.  We started her that day. It takes 1-3 days to build up in your system before you see relief. We are on day 2. No relief yet, but lots of side effects. Drowsiness and dizziness are not the worst side effects out there, but when you are fatigued all the time, and always dizzy and light-headed already, it's not good -- it is making those symptoms much worse and hard to bear; it's scary for her. Katie insists on sticking with it, though, to see if the Gabapentin will bring her some relief.

And so we wait to see on that as well.

I am beginning to loathe the word "wait."