William is Watching You

All Buttoned Up

Sing it with me, folks: M-I-C, K-E-Y, M-O-U B-U-T-T-O-N (the "button" part doesn't flow as well, but it's the only joke I could think of.) The boys now have their g-buttons. (The specific type is the Mic-Key button: www.mic-key.com.)

The surgery was performed by Dr. Herman last Wednesday morning in the OR at Our Children's House at Baylor, and the boys were discharged Friday afternoon (at 5 o'clock, meaning I got to fight Dallas traffic with two post-surgery one-year-olds...who, I must say, were much calmer than I was. Let's just say it's good the boys aren't repeating what they hear yet.)

Here they are post-surgery at Our Children's House. William didn't take long to perk up after coming off the anesthesia and didn't seem to be in any real pain. John-Raven was clearly uncomfortable, so he got some additional medication. (Can you tell by that faraway look in his eyes?)

As of today, the boys' Mic-Key buttons have been in for a week, and the boys have recovered nicely. William is having more trouble with teething issues than with last week's surgery.

Happy Birthday, Boys!

Hard to believe it's been a year.

Home Again, Home Again

The boys are back home, but this time, they have what we've come to call their "mobile feeding station."

So far, they're digging it.

Status Update for 4/25 (with Cuteness)

Both boys are back at Baylor's Our Children's House now. William was transferred over on Friday without incident. It's nice to have them in the same place again.

They're coming completely off oxygen today, and so far, their oxygen saturation is good. They're not really sick anymore, but they're still coughing up some of the last of the junk that's in their lungs.

The plan is to get the boys back home on Tuesday. After that, we'll wait two or three weeks before coming back to get their Mic-Key buttons.

And now, your weekend dose of cuteness.

John-Raven managed to get along even without his brother. He tolerates his therapies fairly well on most days...

But he presents some challenges to his nurses (and his parents) when it comes to equipment. Keeping his nasal cannula in place is difficult when he'd clearly rather chew on it than breathe from it...

William has had a good attitude about the whole ordeal this week. He still has some stuff to get out of his lungs, and a good cough helps with that. So Dad was trying to model for him by demonstrating a good cough. William misinterpreted it as entertainment...

When the time came to sleep, he slept.

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.