I forgot to update
Rachel did not have the surgery yesterday, I cancelled it at the last minute. I couldn’t get over how terrifying the post-operative clean out appointments would be for her. I tried very hard to get her a Valium type medication from both the ENT and our Primary Care but no one felt comfortable prescribing that for her because they are respiratory suppressants.
I am going to push harder for her to use saline and maybe try to pin her down and use a neti pot on her. Increase the humidity in her room and possible get her a hospital type bed so she can sleep reclined. I’m also going to see if I can get our primary care Dr. to prescribe a steroid nasal spray to try and decrease her inflammation that way.
I have no doubt that the end result of the surgery would have improved her breathing but I couldn’t get past how terrified she would be every time I took her back for another “clean-out.”
I feel good about my decision.
My brother comes out to visit next week…. better get the lobster order ready.
I promise a “non Rachel & Batten disease” entry later today.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Thanks for the surgery update. I think you know what’s best for your child, and there are pros and cons to just about everything. Ultimately, making her life less stressful is the best choice possible. I think you’ve managed that. Good job, mama!
You did what is best for your chid, as any good mother would. Only you know what she is capable of enduring. ((HUGS))