Made of Gray

8 Months

Holly D Gray5 Comments
8 whole months! Wow.. We are so fortunate to be where we are today with all the challenges Caleigh has had over the last 8 months. There were good days, there were bad days. We have learned to live each day to the fullest and take nothing for granted. What a little miracle we have on our hands. Here's to 8 more!

On to the miracle.....No more Staph infection! Caleigh's blood cultures have come back negative. So the infection is under control, but we will need to stay in the hospital a few more days to watch things and to make sure Caleigh can start eating again. We still aren't feeding her and her belly sounds are not good. She just needs more time. Caleigh's barometer.......step one, get sick...step two, belly gets huge and we stop feeds. Happens every time, some worse than others and this time was pretty bad.

So we will never know what caused the staph infection. Did you know that 70% of people carry staph in their nose and ears. It's everywhere! Also, a lot of short bowel kids get gut infections and they translocate to the blood stream. Our GI doc was great about easing our concerns. We can't be sure what did it, but the fact that it happened has made us even more cautious about Caleigh's care. I talked to home health (thanks to a good friend) and Eric and I will now be doing Caleigh's weekly blood labs. It is their protocol to not be sterile during drawing blood from Caleigh's line and changing her CVL hub. It's crazy! So now the nurse doesn't need to come out and that leaves one less person that comes in contact with Caleigh's line. I love the 'sign on the door' suggestion and I plan on making a detailed sign when we get home. There are so many people that come and go, home health, nurses evaluating for different programs, therapy crews and then there is all the doctors appointments we go to. I feel like a prisoner in our own home......darn germs.

Caleigh is definitely feeling better. She has been more alert and is back to her home schedule or at least close to it. She is sleeping well, cooing and pushing up when on her belly a little bit more each and every day. Just a cute side note...all the nurses, doctors and just about everyone Caleigh sees checks her lung and belly sounds with a stethoscope. She hates it and screams every time....except with our fabulous GI doc. Caleigh holds his hand and stares into his eyes. She just loves him and so do we.

We have the go ahead to make the trip to Pittsburgh whenever we are ready and I will keep everyone posted on when that will be. Maybe this time Caleigh will want to go with us. I should check Caleigh's schedule and make sure she is available before we make plans......

Don't forget it's the inevitable tax day! Happy filing!
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