When It Rains..

As the old saying goes..

When it rains, it pours.

Rewind back to last Friday night.

Monica and I are getting ready to attend an annual Christmas party thrown the owners of my former employer. I am drying off from a shower, and Monica is dressing Katie Lynn. She asks me to come look at Katie Lynn; her intestine had come out some into her ostomy bag. We were concerned, so we called Katie Lynn’s surgeon’s office knowing we’d be forwarded to an answering service. The service informed us that her surgeon was not on-call that weekend, but would have the other surgeon (who we’d met, knew, and were comfortable with) give us a call. Dr. Goldthorn told us it was normal, that we shouldn’t worry, but if it came out more and we were concerned to give her a call and she’d take a look.

We went to the party and had a great time. We got home and took a look at Katie Lynn. Sure enough – her intestine had come out some more. We called Dr. Goldthorn who told us to come up to the hospital to let her take a look. Once there, the doctor looked at her and said it wasn’t that bad. Yeah, sure to her.. but to us is another story! She pushes it back in but says that it will just come back out again as she moves and fusses. She proceeds to ask what her stools are like. We tell her they’re fairly regular (about 50% of her diapers contain some stool). Then she drops the bomb on us.. she and Dr. McGill (Katie Lynn’s surgeon) believe the earlier diagnosis of Intestinal Neuronal Dysplasia was a mis-diagnosis. Dr. Goldthorn referenced other patients of hers that were 3, 4, and 5 years old who had never stooled. She told us that the biopsy tests results (that lead to the IND diagnosis) only come back as “not working” or “working” – not “immature/underdeveloped”, “not working”, or “working”. Based on this, she feels a reconnect is in order but would consult with Dr. McGill since it would be his call.

Fast forward to this past Monday. We have a 10:30am appointment scheduled with Dr. McGill so that he could take a look at Katie Lynn and decide on a plan of action. Monica wakes me up around Katie Lynn’s 5:30am feeding because she (Monica) is having some pains in her abdomen beneath her right rib. She tells me this is the fifth or six time she’s had these pains in the last two weeks or so. I “make” (strongly suggest.. forcibly..) her to go the ER to get it looked at. She agrees and off she goes while I look after Katie Lynn.

Monica calls me later that morning before Katie Lynn’s appointment that she has gall stones and will be having her gall bladder removed! Monica’s sister Amanda is up there to comfort her and keep her company since I was unable to.

The appointment with Dr. McGill goes pretty much exactly how we figured it would. He agrees with Dr. Goldthorn and schedules surgery for Thursday morning to reconnect her again with the hopes and intentions that she will function normally.

Monica’s surgery goes well and is sent home around 6:30pm.

Katie Lynn’s surgery gets scheduled for 7:30am on Thursday; first of the day. We have to arrive at 5:30 for admitting and pre-op. Her surgery goes well and is sent to Pediatrics to recover. We are awaiting a “greeny” stool and, when started up again, Katie Lynn taking to her feedings.

Her first night went decently – no stool though. This morning Katie Lynn began spitting up the green substance again. The surgeon and gastroenteroligist both reassured us that this was normal after surgery as the gut is the first thing to go to sleep when given anesthesia and the last to wake up afterwards. Around noon Katie Lynn did have a stool; however, it was more like the ones we had seen previously only much thicker.

Then around 5pm Katie Lynn made Monica and me ecstatic – a stooled diaper with a definite green hue/tint to it! Katie Lynn is still occasionally throwing up the green stuff, but each time it gets less consistent, less green, and more liquidy.

Things seem to be progressing, and we ask that everyone continue to pray for Katie Lynn’s continued health and recovery as well as Monica’s recovery now as well.