Oh, for the love. All in all, today was progress, but just because you’re headed in the right direction doesn’t mean it’s easy.
First things first. We had Luke’s first developmental assessment this morning. Because of the trauma of surgery and his bad infection to the bowel, he’s at-risk for delays. Amazingly, his small size has little to do with it – who knew? At any rate, he passed with flying colors today (yippee!) and we will keep checking in for many months until he’s at least a year, maybe more, to make sure he’s on track with fine and gross motor skills. Take home message from this visit? Give him more tummy time. Done.
Next up was the surgeon visit. After waiting an HOUR, we finally got in to see Dr. Meyer. Man, I am so not patient and that just stunk. I digress. Luke got a good report. Quick recap for those just joining in on the Luke train – he got a nasty third-ring-of-hellish infection in his small intestine and colon. Emergency surgery removed his appendix and 16cm of small intestine and the end of that intestine was brought to the outside of his belly. So, basically, instead of pooping out his hiney, it comes out through a bag. Yeah, I thought that was cool on the diaper changing front until I realized what a pain in the you-know-what it is to change a leaking bag that collects all that stuff.
The intestine has to be reconnected to his colon to get his bowel working like normal. The “ostomy take down” will take place December 11 @ 1pm. Mark it on your calendars for some prayer time. We need it.
Take home message from this visit? We need to ramp up the prayers that he has limited damage to his colon and that the ‘take down’ goes down well 🙂
Sheez, by the time all that finished today, I sped to get the girls, rushed home to feed Luke and then the phone rang. You know you’re a hospital regular when they call you 3x in one day. Is that a record? Tomorrow morning, we head to the hospital for his TWO-HOUR MRI. Yikes. Clearly, the papoose contraption that kept him happy for the last 20-minute MRI will not work this time around. He’ll be under general anesthesia and I think I might join him.
If you happen to be up at 3:30 this morning, offer up some prayers – that’s the last time we can feed him until his procedure at 9am. Yeah, that’s gonna be a blast. I’m trying to keep my eye on the prize. MRI = answers…which we so desperately need. The MRI will give us more clues as to what’s going on with the cysts on his brain, as well as the sacral dimple above his hiney. We’re hoping it rules out spina bifida. We shall see.
Man, I’m tired just reading all that.
Take home message for Mom? I’m in freak-out mode…again. Ugh, this roller coaster didn’t really end in the NICU. In fact, I think that was just the warm-up phase. So, here we go again. On the one hand, I’m excited that we’re going to put in some more pieces of the puzzle. Problem is, we have no idea what that puzzle looks like. And, I don’t like surprises.
Yeah, we’re back to that whole, ‘God is in control’ thing 🙂 So, we take it one thing at a time. Getting him to 3:30am and mighty full and then getting to the hospital on time. Beyond that, there’s not much more we can do.
As always, your knee time is appreciated – more than you really know. We’ll be doing some of that at Dell tomorrow. I’ll keep you posted via FB in the morning and I’ll do my best to get a full report up tomorrow night.