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
The last two days have been tough for our sweet Fletcher. He has a very bad yeast infection around his trach and g-tube, on his tummy, under his left armpit and in his groin! UGH! Our concern is that the infection will get to his central line and that would be bad news! But, so far they have been able to keep it at bay. Right now they are treating it with Difulcan and a topical cream, they'll try this for 48 hours and if it doesn't clear up they will give him an IV anti-fungal. He's just been cranky and I don't blame him! Last night our church had Holy Halloween, the plan was to load up Fletcher and take him to the church. Well, that plan fell through when we went to TCC to get him ready and he just wasn't happy and nothing we said or did changed his attitude. Then as soon as we put him in his wheelchair he desated. That's when I said forget about it, he's not going anywhere. The girls were already at the church so Craig stayed with Bubba and I went to meet the girls. I was so sad not to have Fletcher with me. I'm so tired of not having a normal family where we can all go places together. And I hate that that's our normal. People don't ask where Fletcher is, because it's normal for him not to be with us. I know, having this kind of attitude doesn't help and you all know I don't dwell on this constantly but some days are just harder than others. And yesterday was one of those days! The girls had a great time. Maddie played all the games and bounced the night away in an inflatable! Kayleigh helped her youth group sell nachos and throw people in 'jail'! After Holy Halloween, Kayleigh had a blast trick or treating with her cousin. Well, that's all for now, please keep Fletcher in your prayers that this yeast infection would go away and that he'll stay healthy this winter.
PS I have started working on my 'Fletcher series', but I'm kind of struggling with putting this experience in words. So, it might take a little longer than I planned...
Comments by: mom huebert
I'm so sorry you didn't get to have the fun family time you had hoped for.
By the way, could you define "desated" for me? I've been all over the internet trying to find out, and I'm still at a loss.
Posted: 11/1/2007 8:30:00 PM
Comments by: Catherine
I had no idea what was going on with Fletcher! I didn't get by to see him today like I usually do! We will be praying that that clears up soon! I'm sorry that things didn't go as you planned! I was thinking of Andrew too all last night and I prayed that next year he could be with us for our trick-or-treat with the famiy. I feel envious of other people sometimes and then I always pray forgivness for that because I know I shouldn't feel envy like that, but it is hard. Praying can do awesome things and we will be praying extra hard for Fletcher!
Posted: 11/1/2007 9:21:00 PM
Comments by: mom huebert
Thanks for visiting my blog and answering my question. But now I have another question. I'm sorry, I'm pretty ignorant about medical terminology and slang, but what is "bagging"?
And I'm so sorry you have such problems with Fletcher, but how wonderful that you have him.
Posted: 11/1/2007 11:35:00 PM
Comments by: Kristi
We love you Denise!
Posted: 11/2/2007 8:21:00 AM
Comments by: Mayhem And Miracles
I just came over here from Ashley's site, and it has really (REALLY) started to become a thought of mine to imagine what this must TRULY be like - the constant separation. I think it is one of those things that you TRY NOT to think about because it is so uncomfortable. But then I thought how you and Craig and Dave and Trish don't have that choice. You HAVE to face it - daily - whether you feel like you can handle it or not. I really don't know what to say. I know Fletcher's value or Ashley's is not diminished one tiny iota by all the extra care they require, but there is not a human being alive who wouldn't get tired from all the extra routine and fatigue just plain makes things harder to handle. So in that sense, I am SO SORRY for your family, that you can't just take for granted a night out to dinner or a fall festival like the rest of us. If nothing else, you all have made me much more aware of those types of blessings in my life - the simple ones that I just take for granted. I hope that Fletcher is protected from all the nastiness that lurks in hospitals this time of year. I haven't been to the center in quite a while. I would sure love to meet that little guy and you! I am hoping tomorrow perks up for you. (Wasn't today's weather weird? I felt really blue today too, but for me it was for no good reason.) I am so glad you left me that first comment, so glad to get to "know" your family, and so eager to hear Fletcher's story. I have come to love him through his photos and hope to have the chance IRL real soon!
Posted: 11/2/2007 7:44:00 PM
Comments by: Sniz
Maddie made such a cute cheerleader. Poor Fletcher and your poor family. I'll be praying for all of you.
Posted: 11/3/2007 9:07:00 PM