Burns Family Blog
Fletcher's mother sent out e-mail updates to our friends and
family in order to keep everyone up to date on what's happening.
On January 20, 2007 she started a Blog.
Here is a backup copy of that Blog.
Last Updated: 11/29/2007
Yesterday was a tough day for our little man, Fletcher. He's having desating episodes again. Yesterday he had about 9 of them! Maybe all the changes he's experiencing could be part of it. Last night when I was with him they needed a urine specimen, trach secretion samples and blood for cultures. Well, last night his central line would not draw any blood so they had to stick him and they needed about 5 cc of blood! That's quite a bit when they have to do it with a needle! Poor little guy! This morning when I went to see him he just wasn't himself, but I proceeded on with our morning routine of diaper change, getting dressed then holding him before I put him in his chair for his PO feeding. Well, as soon as I put him that chair he started to desat so I picked him up and put him in his bed and we had to bag him. I asked the RT to change his trach, just in case it might be causing the problems. Fletcher seemed to perk up a little so I fed him a whopping ounce of green beans and applesauce. He did okay, but when he was done he was done! I kept him with me instead of sending him to school. I held him the whole time I was with him this morning. Maddie and I went up there after lunch today and he was trying to be happy for us, but he's just wasn't himself. Craig is with him now hopefully he's had some rest today and will enjoy his time with his daddy.
Eye surgery update: Saturday I received the referral for Fletcher's eye surgery. Great right? No, not so great. Insurance is an enigma to me. First of all, I'm really not in charge of Fletcher's medical happenings (i.e. booking appointments, setting up transportation, etc) so me having the referral on a SATURDAY with an effective date of 8/30/07 and an expiration date of 8/30/07 (no, it's not a typo, you read it correctly! UGH!) doesn't really do anyone much good! So, today I talked with the TCC lady who does handle appointments and she was clueless about what was happening. And on top of it all the person who books appointments for the surgery at Dr. Hildrebrand's office is off and has been since last week. Guess what? It only gets worse. The TCC lady calls the insurance company and they say it's not a typo that is the day of the surgery! Since when has an insurance company booked a surgery for a doctors office? Did they also call Children's Hospital and book an OR? Guess what? They didn't do any of these things! So, who knows? He might be having surgery Thursday. Tune in next time as the EYE DRAMA continues! Obviously I'm a little frustrated and would truly appreciate your prayers. As I always say, we've been trying to get his eye fixed literally since he was born. It just seems so crazy to me.
Oh, yes I do have two other children, right? Friday night Kayleigh went to a lock in at church. She had a blast. She invited her cousins and they stayed up ALL night playing games and hanging out! Boy was Kayleigh tired when I picked her up on Saturday. At one point on the way home I was talking to her and I looked over at her and she was asleep! Good times! Tonight Craig and I went to Open House at Kayleigh's school. She seems to have some really nice teachers this year.
Maddie is enjoying Kindergarten so far. She isn't experiencing any anxiety when I leave her at school and she is tired and hungry when I pick her up. Today we ate lunch at 11:00 am! We usually go home for lunch and then head up to see Fletcher, because as soon as RSV season starts in October gone are the days of her being able to go up there with me. Tomorrow night Maddie starts tap and ballet again. We have been off since last May, she's pretty excited to get started again. I'll post some pictures tomorrow of her in her new leotard, which is blue this time. I still haven't purchased her tap shoes and ballet slippers we'll do that tomorrow after school. Need to go for now! Thanks for dropping by!
Comments by: Kristin Nicole
so, last night I posted a blog that was titled " a lot going on". Then I just read yours and let me tell you it was like a swift kick in the butt! thanks for helping me put things back into perspective.:) We'll being praying for all of your strength.
Posted: 8/31/2007 9:16:00 PM