C-Diff Again

C-Diff

Yes...Kylee has c-diff again. I am thinking she has had it for about 2-3 weeks now and we just got it diagnosed on Saturday. She started with a lot of #2 diapers and we thought maybe we were running her feeds on her pump to fast as we were trying to shorten the time she had to be hooked up to the feeding tube. So we dropped her down and she still continued. I called the Dr and said I wanted her tested for c-diff. She sent all the paperwork over and I went and picked up the kit right away. The lab tech told me I needed 2 tablespoons of stool so it took me 5-7 days and I wasn't even close to that. It is so runny it ends up soaked in the diaper or everywhere else. So I took it in and asked if they could run it on what I had and a different then what gave me the test said we had way more then they needed. She has no idea why they would of told us we needed so much. So it came back positive yesterday and we started on the medicine yesterday. She also was starting to become dehydrated from going so much that I was worried she was going to end up in the hospital with an IV. We have such wonderful nurses that they just got her going on the pedialyte and lots of water and she was good to go.

Procedure

I was worried that with the c-diff Kylee's procedures for Monday would be cancelled but they said we are good to go. They will just put us in isolation once we get to the hospital. So on Monday we are going to Milwaukee and she is having an upper scope done with biopsies of her throat, her mass removed from her ear and a culture of her ear so we are sure to be treating the non-stop ear infection with the correct medicine and a new GJ tube (feeding tube). So it will be a busy day but hopefully we will be done with procedures for a while.

Therapy

Even with Kylee not feeling well she has been doing great when it comes to therapy. As I stated she ate a whole jar of baby food which she continues to eat pretty good. She is getting better at her sitting and she is now able to stand by the sofa with nothing on her legs but her orthotics. She kind of lays over the sofa cushion but just the fact that she is keeping her legs down is huge. Usually she gets them tucked under her butt as fast as she can. We also got some new equipment. We got an airwalker swing for in the basement. It was donated by another family. Kylee loves to swing but winter is coming and we won't be able to be outside much. We also got something called a HOSPA dress. It is kind of like a older style johnny jumper. It is a suit that goes around her body and then it is on a pulley system. This is to help her weight bear on her leg but to also teach her cause and affect. Like when she kicks her leg she spins so they want to teach her that if she does it again she will get the same response. Accidental movements become purposeful movements.

Week Ahead

So Monday is Kylee's procedures, Tuesday is speech and hopefully she does as well as last time, Wednesday we have my mother's brother's funeral and I also have to have Kylee's paperwork for school all signed by Wednesday and we have physical therapy on Wednesday. The rest of the week nothing to exciting.....just how I like it :)

**I have pictures of Kylee in her swing and standing by the sofa that I will try to post soon...we are on our way to our block party but wanted to post an update before we left otherwise time gets away from me.