Monday, November 12, 2007

Ciarra is sick, and other things

Well, Ciarra has been pretty sick, with what we thought was the monthly sinus infection crap. We have been dealing with it since she got her tonsils out in June of 05. Recurrent nasties, she wakes up with patches of disgusting...stuff...all over her throat and mouth. We clean her all out and she then just has this nasty nose and bulging eyes, she sounds like she needs to blow her nose badly. Well, this time life decided to toss a bit more our way. It should be noted that Ciarra has had ruptured eardrums in the past which have left really large holes in her ears. Holes that dont want to heal. She had tonsils and adenoids out 2 years ago, and we thought maybe this would end. But it only made things worse. Not sure if she got something AT the hospital, just wont go away. ENT tells me it has NOTHING to do with her having DS and everything to do with my family's known antibiotic resistance/reactions. We have tried everything.
Anyway, just about 2 months ago, we got the wonderful news that the perforations in her ears are healing, coming slightly closer to the size she could avoid surgery with. We had been praying for that. Even with the improvement, the hearing center wanted to discuss hearing aides. Our ENT said hold off, the holes were closing, give them a BIT more time.
This morning we discovered that Ciarra's ears were bleeding. You have no idea how hard and fast my heart hit my shoes. This is bad on many levels, not the least of which is...shes ON an antibiotic (omnicef) and it is apparently not touching this bug. Beyond that, she is hurting, and a bit freaked out. So the "really good" anti isnt helping, and we are getting desperate. My Ped, who I adore, chose today to joke around about "I dont know" regarding the answer. Im afraid I was a bit crabby in my reply. I should add that on my way in to his office, we received a call that our business (a small garage) had been vandalized AGAIN. 4th time this year. This time, broken windshields. I was not in a good mood, to say the least.
So he prescribed Cipro, which apparently, is a big gun. It will kill most staph, just in case this IS staph. (Which cultures had shown it wasnt, but we recultured Friday)
Did I mention this is a holiday, and the ENTs office is closed? So is the lab, so no culture report is available. Oh, and our pharmacy had no cipro, so we had to drive into the city (thats TWO towns away, for those keeping score) to get it. I drove through McDonalds for Ciarra, and bought her an ice cream to make her smile. Poor girl is a trooper.
We see the ENT tomorrow. I am not sure what to think. It is painfully obvious that the perforations will now be bigger...again....after 2 years of willing them to close. We are likely looking at surgery, which our Doc says would need to be done in Boston, because she is too small. It involves putting fine pieces of rice paper over her ear drums and grafting them in with skin....sounds like fun, huh? *I* just want to know WHAT is causing this thing? what germ are we dealing with? What is this CALLED? Surely something so persistent has a name? I just want to know what Im dealing with, because "Here Miss Harmon, put her on another antibiotic and call me in the morning" is not working for me. And you know what? I have been known to tell a doc an antibiotic was NECESSARY, when it was. I havent been wrong yet, the kids various ills usually respond to an anti when I say they need one. I know my kids. But this time...I just dont know. This time it is BAD. This time its happening while she is on omnicef. HOW? Hopefully tomorrows culture will tell us more. I think Im gonna host a protest and chain myself to the ENTs desk till we get an answer Ciarra can live with.


LeeJo said...

Hugs to Ciarra. I hope she's on the mend. Does she have tubes? Alex bleeds from his tubes several times a year, after they've been irritated. His ENT says they've been in for a long time and the tissue is trying to expell them, but they are still working.

If she doesn't have tubes, just ignore the above. Praying for Sweet Ciarra.

Megan's got 47 said...

I HATE HATE HATE when we get the I don't know response. To me it is "I could make that determination and make the big bucks"...kinda like when I watch football and the receiver drops a catch...well I want to make millions to drop a catch...I could do that easily!
Doctor's these days never seem to know the answers to all these new medical issues...I do believe we are in an age of the super bug and we might not get answers like we used to when we were young.
Good luck with the Omnicef. We had bad side effects from using that with Olivia. She ended up with blood in her stools. But many of my friends have said it was a god send.

Michelle said...

actually, the omnicef DIDNT work. We are on to Cipro...the big guns. They are really messing with her too. But they're necessary. Send a prayer for her, willya?

Leah said...

Hmmmm I know you don't want to hear this, but I would really suggest they put her on IV antibiotics for a few days. The holes in her drums are acting as tubes, so the fact her ear is draining is actually a good thing (in an odd sort of way) because had the hole been healed she probably would have just blown her drums again. The grafting surgery is NOT FUN! The surgery itself really isn't that big a deal in the scheme of things, it's the post-op care that's a pain in the neck. The graft tissues is extremely fragile, so the kids need to be very inactive for several weeks following the procedure. I can't imagine telling Angela "No jumping!" I don't remember, has Ciarra ever been tested for reflux? It can sure cause some nasty problems with the ears and sinuses! That refluxed material travels up the eustacian tube then just grows gunk in there. It also washes up into the sinuses growing stuff there was well. Poor kid, definitely NOT FUN to be sick!