Well Kyleigh’s tummy has been firm ever since surgery. Her inny was going towards an outty. They restarted her feeds thru her tube at just 5 cc and hour. Good thing we mentioned something about it and got them to start slow on breast milk because now she is hard. Her tummy is so bloated that the skin is tight. She is on the Dex and they upped it and you can still see her grimace. She started to wiggle around and they gave her some Morphine and stopped the feeds (they were going to increase them). They are going to give her a laxative in a few minutes and see if that helps. She has had no solid colostomy output since the surgery only gas.

They doctor who came in to check asked if she had been on laxatives at home and we said no, no problems ever with that. They also asked us since she has reactive airway and other croupiness since we got to the hospital if she has ever had breathing treatments at home. We said no always crystal clear and they are surprised since every other heart baby has problems.

It seems that our little Kyleigh when her body is stressed with surgery goes all out of whack. Today alone she had at least three breathing treatments we saw. No to count the breathing treatments they give her when the intubate her to make her accept it.

Tough to find out on our first surgery what she needs done when surgery happens. But now we know for the next one they need to start laxatives ASAP and we need to stop her feeds beforehand a little sooner than we are supposed to. We know to tell them she has reactive airway so they can intubate her easier. Oh the fun of finding this stuff out.

She is back asleep again now (yes she woke up and looked at me thru the Dex). You can still see her furl her eyebrows, but the medicine is too effective to allow her to move. It is reassuring to know though that even though Dex knocks her out very nicely that she can still feel pain and wake up and tell us thru the Dex.

Another thing I noticed in looking thru my bloggings is that on Monday she took 9 ounces by mouth and the next day it dropped off substantially. Tuesday we actually made a comment that she is acting like she did at home and we tried the red rubber nipple again so she could eat before she would be NPO for the sedation echo. In retrospect that was a signal that she couldn’t breath well and that the fluid was pressing on her lungs and that stressed her heart which eventually led to the high heart rate. The little things add up so don’t ignore them or toss them aside. Because of this we didn’t waste time in pointing out the firm belly and because of that probably saved Kyleigh and me from another bad night. She would have been bloated to the moon on a 30 cc an hour feed and doing the exorcist uncomfort bend.

Again so nice that this place actually listened to us, took the concern, changed the course of her care and as such identified a problem, a solution and kept Kyleigh as comfortable as possible. There is a good reason this hospital is ranked in the top ten in the nation.

Kyleigh’s heart rate is down to an all time low of 106. Another indicator that her pain was going up is that her blood pressures have kept increasing with the feeds. Again tiny little indicators of internal problems.

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