Made of Gray

One day early

Raising the Rare ChildHolly D Gray4 Comments

Yesterday, I called the GI doc to see if we could bring Caleigh in a day early for her appointment. She had been off the 'MUD' antibiotics since Monday and she was already showing signs that the bacterial overgrowth was coming back. She was very fussy (even for her) and she was having a lot of yellow drainage from her button site. Plus she was breathing about a 100 times a minute which told us she was doing her same'ole routine. So they got us in the last appointment and we changed up a few things. First we are starting the 'MUD' mixture again and we will keep Caleigh on it for 2 wks and then see how things go again. Our GI doc also added Bethanechol to the array of meds already on Caleigh's plate. This med helps the muscle system related to the gastrointestinal tract. Since Caleigh's intestinal muscles aren't working we hope this med will stimulate them to do the right thing. Our doc also ordered us melatonin to give to Caleigh at bed time. Melatonin is a natural hormone in everyones body that is triggered by daylight and nighttime. It basically helps you relax and is considered very helpful in children with neurological disorders. Plus it is a natural route to try since so many sleep aides are very habit forming in children. Eric and I are going to start tracking Caleigh's sleep in a log so that when we go to the neurologist appointment we can have an example of her sleep patterns. Also our GI doc made me promise to take some time away really soon......apparently I looked really tired? Go figure :-) Caleigh's labs this week looked great. Her direct bilirubin is .9 which keeps getting better and better.

So on Tuesday we went to do a hip ultrasound and then took Caleigh to the surgeons office. She had a really great day. Loved her car ride, semi-loved the ultrasound and really loved the surgeons office. I'm pretty sure she missed all of her NICU aunts & all of the doctors. It's a definite fact that she misses the florescent lights! Caleigh was in awe of them everywhere we went.

The radiology department called yesterday morning and wants us to come and get hip/leg x-rays on Friday to backup 'whatever' they think they see on the ultrasound. It kinda stinks not being in the NICU for these kind of things. We were always told what they see when they are doing it and we usually didn't have to wait for the radiologist to read the films and write the report. So anyways, I'm sure there is something there or they wouldn't be having us come in for x-rays. Hopefully, we can talk it out of the radiologist on Friday. Wish us luck!

So on to today.... last night Caleigh didn't sleep hardly a wink and she has been asleep pretty much all day long. So at least she is getting the sleep somewhere to catch up. Her button is draining a lot more and her belly is a bit more distended than yesterday. Good thing we started the antibiotics back up this morning. Hopefully, we caught it in time. Other than the normal routine, things are moving along well.

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