Status Update, 4/22

William is still at Children's Medical Center, but he appears to be on the tail end of his illness. As it turns out, he had bronchiolitis (which was the result of a common cold virus) and aspiration pneumonia (which was likely due to the bronchiolitis and/or the cold). He hasn't had fever for a couple of days, and he's barely on any oxygen at all right now. They'll be weaning him off of oxygen today and if all goes as planned, he'll be back at Our Children's House tomorrow.

John-Raven did not have his surgery this week because (surprise!) he's come down with basically the same thing that William has. Thankfully, OCH was prepared for it following William's episode and have been able to stop John-Raven's problems from escalating.

At this point, the G-tube surgeries will be delayed by a few weeks. After the boys respiratory distress this week, any anesthesiologist would be hesitant to put them under until a proper length of time has passed.

So the plan right now is: get William back to OCH, get set up with temporary NG-tubes, go home, and then come back to Dallas in a few weeks for the G-tube surgeries. I'll let you know if the plan changes. (Judging by recent events, I wouldn't be surprised if it does.)

Also, to clarify: I've been referring to a G-tube, but actually, the boys will be getting what's called a Mic-Key button. For those who don't know, the Mic-Key button is simply a small, low profile valve that is placed in the stomach to create a feeding port. When it's time to feed, you connect the feeding tube to the button. When feeding is done, the tube is disconnected. (Sometimes, a G-tube is used for a couple of weeks before transitioning to the button, but our surgeon may actually just put the button in right away. We'll see.)

William Visits Children's Medical Center (But Not by Choice)

On Sunday, in a matter of a few hours, William went from this...

To this...

He's much better now, but he gave us some drama for sure. It began in the afternoon. He had been doing fine except that he'd been really congested from seasonal allergies. When he woke up after a nap, he was working really hard to breathe and his color was bad. We called in the nurse, who called in the doctor, who called in a whole team. His oxygen levels were low, and because of his history of aspiration, the doc didn't want to take any chances and wanted to make sure he was in a facility better equipped to tend to whatever problems might arise. So he was on his way to the ER at Children's Medical Center in Dallas.

William is still at Children's, but they're weaning him off of his oxygen now, and if he does well, he'll be back at Our Children's House at Baylor soon. Of course, this will delay his surgery, but maybe for no more than a couple of weeks. John-Raven's surgery, however, is scheduled for Friday unless they bump it up. More to come when we have updates.

Moving Forward with the G-Tube

After closely evaluating the William and John-Raven, the speech therapists at Our Children's Hospital have officially recommended G-tubes for long-term feeding purposes. They feel there are too many risks involved in trying to give the boys the nutrition they need by mouth at this time. We have decided to go ahead with the procedure, which will likely happen early next week in Dallas at Our Children's Hospital since the boys are already admitted there.

In just the week since they've been at OCH, the boys have already gained weight because of the feeding process in the hospital: We feed them for half an hour, and whatever's left, we gavage through the NG-tube. In fact, they've gained more weight in the week since they were admitted than they have in recent months.

But an NG-tube is temporary (through the nose), whereas a G-tube is long term (directly through the stomach). Seeing their gains in the last week, we know they'll have good growth once the G-tube is in place.

We knew the G-tube was a strong possibility. I think that, more than anything else, we weren't so much bothered by the idea of the boys getting feeding tubes as by needing feeding tubes. Like any parent, we want their development to be in the positive direction, and needing a G-tube felt like a step back.

But we've done what we can. We are confident that eventually, we'll get the boys' feeding back on track and off of the G-tube. Doing so will be a long-term process, of course, and in the meantime, they'll get the nutrition they need safely and efficiently to power their little brains and bodies and to give them more time and energy to play and put that nutrition to use. I imagine we'll soon see the G-tube not as a step backward, but as an important tool to help us move forward.