Surgery and talk of coming home

Max's doctor said this morning that she's looking at surgery for next week. This will be the surgery to back in and make the final repairs on his bowel. His ostomy should be gone after this.

The surgeon will come in this afternoon and they'll discuss how he's progressed on his feeds, respiratory, etc... so we should know more then.

For this surgery, Max will go back on the ventilator, stop eating for several days, etc... so it's a big step backward, but one that we know was coming. They'll wean him back off the ventilator and slowly start back up on his feeds.

It's not as "invasive" a surgery as the last bowel surgery. This time around they do not expect to take ALL of his bowels out and check for holes and leaks, etc.. The surgeon will just repair the ostomy piece that's outside, basically, sewing two ends back together, and then put everything back inside.

He does have to go under general anesthesia, which is always a big risk for babies this small, but we've had that twice already with the heart surgery and first bowel surgery, so it seems less scary this time with him being bigger and stronger. The anesthesia paralyzes him, which is why he'll need to go back on the ventilator. Hopefully, it will only be for a short time, and he'll come quickly back off the vent to less oxygen support.

He may very likely swell up REALLY large again like he did last time around. That time he gained 2 pounds plus in just water weight. Once his organs kick back in after the shock of surgery and start working, that fluid comes off and he'll start to look and act normal again. Then they'll start with small, gradual feeding through his tube.

Eventually, he'll work back up to a bottle, and once he can eat EVERYTHING for all 8 feeds per day from a bottle, and have no "spells" where he drops his heart rate of oxygen for at least 2 weeks, THEN he'll be ready to go home.

We're hoping for sometime in August. But we're prepared for October. (That would be 6 months, which was the far side of what babies his age would spend in the NICU. It's also the longest they could keep him at this hospital, before transferring him somewhere else ((Children's Mercy)) for the developmental care he'd also need at that point.

So, we wait for the exact date from his surgeon. We probably won't know that today, but should know by the end of the week. Troy will take the day off and we'll both be here at the hospital with him until he's stable.

Today, he drank 35 mls from a bottle! That's the most yet! They decided to let him try taking a bottle twice a day now. So we'll see if he has enough energy for that this afternoon or this evening.

Troy is coming up after work, so we'll likely try the bottle at 6pm while Daddy is here. Then we are off to take our infant CPR class, just one of the requirements before he can go home. Next week we have our "Homeward Bound" class from the hospital, which includes how to use the monitors, oxygen, etc... Lots to learn just to take him with us eventually!

Luckily, our favorite babysitter, who is also a nurse, "Miss Sarah" is teaching the class we enrolled in tonight. Hopefully she'll give us extra lessons if we need them!