Thursday, April 30, 2009

Things Could Be Worse, But I'd Like Them To Be Better

Ok, I could write for days and still not tell what we have been through the past 5 days. So I'll spare you all on that part. Bailey ended up being discarged yesterday right before lunch with an appointment at 3:15 in Jackson with an ENT to be scoped to find out why she still has stridor. Of scoping her, which she did fabulous with, much better than her Mama at 25 when I had sinus surgery, it was determined that has a "strawberry birthmark" in her throat/esphogus. I mean, really...WHAT???? So, we are scheduled to go back to Children's in Jackson on May 8th for her to put under general antheshia and "explore" the exact location and size of this pesty little thing. At that time, the doctor may remove it, may not. I'm not real clear on what will determine if he does or not. But I've got a call in to his office so I can ask more questions. I was kind of stunned when that's what he said it was so I didn't ask questions, which is odd for me.

Ok, so this doctor just scored some major points. He just called back and it's only been about 5 mins since I left a message with him. Now that's a man that knows how to deal with a mama's anxiety. Dr. Carron says that we'll know more after Friday. He'll remove it if it is taking up less than 50% of her airway. He'll leave it in and manage it with steriods if it is taking up more. So the interventions used to deal with this ranges from medications, to surgery, to a ventilator, to ultimatly being trached if her breathing becomes that compromised. He says this is very rare and he's only traced a kid once over the past 7 years and she had other things going on too, not just this. He also reiterated this may not be what she has once he gets in there. It may just be scar tissue caused from the vent at birth. But we'll know more about it. He's going to look at her other "parts" to check and see if there is anything else causing the reflux and he'll start her on prevacid, which is stronger than the zantac. I LOVE this doctor. I just wish we'd gone straight to Jackson.

Without getting into 5 days worth of a story, I was so mad by the time we left this hospital, the CEO had been to visit me. I don't think she really cared what I had to say, but she did show her face. I'm not done with them yet, they will be getting a letter. And the bad thing is, the care she received was great. It was just the over-all fact that we sat there for 5 days doing something that wasn't making her better, 2 of those 5 days, I was asking to transfer her to Children's and they wouldn't do it. When I get finished, they are going to wish they had just transferred her on.

Just say a prayer for my sweet little girl. She sure does love life and was even smiling and laughing and talking to the ENT when he was scoping her. He couldn't beleive it. NeNe stayed with her at the hospital Tuesday night so we could get some rest and I'm very thankful for that. We needed it since we had to go to Jackson yesterday. I let her Bailey stay at home today so she could relax and rest. Sid kept her this morning and then i came to be with her this afternoon so he could go to work.

Andrew, Chris and Leslie's new baby, has to have hernia surgery next week. So say a little prayer for that fella. Miss Erin is 5 freakin years old today. I. can. not. believe. that!!! It makes me so sad to think about her growing her. We'll be going to Alabama on Saturday for her party at Froggy's. I hear her Mimi took her and let her pick out some princess shoes and dress (pagenet dress) for her to play dress up in and she's having a ball.

MOm and dad made it back from Costa Rica last night. Seems as if they had a great time! We're glad they made it back!

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