Made of Gray

The New Beach Destination

Raising the Rare ChildHolly D Gray2 Comments
Where am I writing you from....you may ask? Not Pittsburgh!

Caleigh has decided that her new favorite destination is Cook Children's Hospital. Yep you read right......were back. Yesterday, about noon, I took Caleigh's temp. It was 99.6 degrees. I uncovered her and then the ECI people came out to do their evaluation. Around 2:40 or so I took her temp again, when they left, and it was 101.00 degrees.

Now let me explain something here.... normal baby you would call the Pedi and give Tylenol, watch the temp. Any kiddo that has a central line, aka Caleigh, this means serious business and a possible blood infection. A blood infection could mean that we would have to pull her central line, which is considered her life line at this point. Bad News......

Gave Caleigh some Tylenol. I called our GI doc and told him what was going on. He of course said to go to the ER, and after some crazy packing, Eric rushing home from work, my mom holding Caleigh while I accomplished the crazy packing......we finally arrived at the ER about 4:30. Just in time to beat the Friday 5pm rush. It's funny because a lot of the staff remembered us. Especially when we explained that our GI doc is really Caleigh's primary doctor. We got in without a wait and started telling the whole story to everyone that asked. I think I should just give them the blog address! I've actually been working on a medical history summary that we can just hand the admissions people, but I haven't been able to finish with all the admissions we have had to do! Another thing of interest, the ER is swarming with firefighters, all of which are paramedics. Each time we go it's like showing up to a firehouse, it's nice and makes us feel more comfortable and at home about the situation.

Ok, so I got off rambling, anyways they started tests, we did a chest x-ray (Caleigh hasn't kicked the cough since our last visit) and then we waited for our GI doc to come. He came about 7ish and ordered some more tests, told us not to cancel our trip just yet and (most exciting of all) gave Caleigh a new G-button. The old one had been in since January and we had been having so much trouble with it leaking. When he showed up it had started to bleed around the stoma, she was in pain and I told him to please do something about it. He went and got a new size 15 french 1.5cm (old one was 18 french 1.7cm) and swapped it out just as easy as can be. It's the weirdest thing seeing a hole in someones stomach, especially your own child. And presto! Just like that the hole was plugged and NOT leaking a bit! I'm so excited about it I could just scream!

So our doc decided that since Caleigh is medically fragile (one of many labels), he should keep her in the hospital at least until the preliminary results from the blood cultures come back. They did start her on two different antibiotics, Vancomycin & Rifaxin, just in case there is some kind of infection. So the cultures are sent to the lab where they are watched to see if anything bad grows. They come back at 24, 48, & 72 hours. If nothing has grown in 24 hours, which would be 6pm tonight, then we will be discharged and sent off to Pittsburgh. Of course, if something does grow then we will be hanging out at our new destination spot a little bit longer.

My thoughts are that Caleigh hasn't got rid of her cough which makes me think sinus infection or something like that, but with her line we just can't take the chance. Her fever went away by midnight last night mainly because the antibiotics were kicking in. She's fussy and acts like she doesn't feel good, so it's definitely hard to tell what is going on.

*As I was writing, our nurse came in and told us that the preliminary came back with gram positive bacteria. We will still have to wait and see just what kind of bacteria it is that is growing. We're waiting on our doc to come by and give us a game plan. As of now, Caleigh is getting good antibiotics and now we begin the waiting game at our new beach front property.

As soon as we know more, I''ll let everyone know!


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