Saturday, July 11, 2015

Another Chloe Update

{ This chic can rock a hospital gown.}

Last week we attempted to take out Chloe's G-tube called a Mic-Key, and put in a GJ tube {aka goes into intestine}. The idea being that since Chloe's fundo is blown//no longer exists, that we'd bypass stomach and feed into her intestine to lower puking episodes {...sorry, gross post warning...might want to finish eating first...}. We took her down to have it placed, and unfortunately it didn't take because the guide wire wouldn't go into her intestine. One of the nurses that helped said it was like they were hitting a brick wall. It didn't make sense though considering that when dye//contrast was shown on imaging it going through intestines, and she's still making diapers, so there's no real blockage. Chloe continues to throw us curve balls. She likes baseball season. We need to get her some KC Royals clothes.

That was Thursday.

On Friday, we tried again. No such luck. Same as before.

We all decided that either going back to original Mic-Key button was best idea, and get her eating again this way even if it meant going down on feeds. But then they said, "You know, if there's something going on though, we really need to know what's up with the intestines and do an upper GI scope." We were at first stressed about stressing her out with more sedation, but it's no more invasive than what they did last week, so we agreed, but it'd have to wait till Monday. After phone calls half way home where they almost had us turn around and come back so they could do it on Friday, we decided it's best to wait till this coming week and not stress her out anymore. She already threw up blood on Thursday during the procedure and on Friday, and got pretty upset during those episodes. She needed to rest, and as her parents, we pushed for this.

So we head back tomorrow, and hope that early this week we can get that GI scope done, that they do not find narrowing of the intestine, no blockage, and they can advance the J portion of the tube into the intestine. We pray they can get feeds going again and that she'll FINALLY feel better tummy-wise.

It's been a whirlwind of a week, and an emotional roller coaster.

The good news of the week is that her heart surgeon thinks Sildenafil {drug used to relax heart and lungs} is working. The good news is that for healthy child, this surgeon gives 5% risk of complication. For Chloe, he's giving 10% chance, not 40-50% like we thought he meant. We've feeling more confident to bring her home this week since she's almost back to baseline, and soak up the snuggles and let her rest until August 10th, surgery date.

Thank you all for reading, encouraging, prayer, and helping us through this crazy last month. Please pray in coming days that she can get this test, and that she comes off sedation well without requiring another PICU stay.


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