Gage Comes Home

Gage arrived back home on the evening of May 6, 2016.  He was all kinds of smiles and looked better than ever. It's been just about one week now and everything has been going so well. Gage is actually eating with us at the dinner table and trying just about everything he can. He seems to be much more mellow now than I've ever seen him. He let's me sit with him more and for a longer period than before.

Whether he's on the floor, in his chair, or just laying in his crib, he seems to be pretty content. "He always looks so chill" we find ourselves saying regularly. The best part so far is that he hasn't puked a single time. Not only is he holding his formula feeds down but he's also swallowing real food and keeping that down as well.  Prior to this last trip to Boston, he couldn't even swallow a bread crumb without vomiting everything in his stomach. Small steps leading to big progress...

Gage turns one year old on June 3.

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Happy in Boston

Mr. Gage has been doing very well this past week.  Shortly after his valve replacement, Gage got his G Tube put in.  The GI team in Boston felt that Gage didn't need the Fundo procedure which was a bit of a relief.  For a couple days after the G Tube surgery Gage had us all worried when he was showing signs of blood loss in his diaper and in his vomit. The doctors backed off on the blood thinners for a short period and also opened his G Tube to allow any old blood from the surgery to drain out.

That seemed to do the trick and now Gage is just healing. He is back to his very happy smiley self.  Hopefully within the next week or two, Gage will get to come home.  As far as we know, he just needs his INR to come up a little more and then he'll be discharged. Gavin and I have been fortunate enough to Face Time with Gage and Gage gets a kick out of seeing us too. It amazes me how seeing us on an iPad doesn't seem to confuse him at all.

Gage communicates with us as if we were right there next to him. He really gets excited when Gavin talks to him. He misses his brother very much.

First Week Back in Boston

So the surgery went as well as we could hope for and Gage continues to do well. They'll be taking Gage of off the Sotalol to see if the ablation was successful or not.  If it was, he shouldn't have any SVT over the course of the next week or so.   His heart rate could easily reach the 230's or higher when his SVT was uncontrolled.

He's having a tough time coming off the heavy meds like the morphine and etc.  This was the experience last time we were in Boston as well.  His cardio team did an excellent job of helping him recover last time and I'm sure he'll get through it quickly again.  Hoping to see some smiles soon! I hear he may be sneaking in a few every once in a while but with the withdrawal he's experiencing, I can imagine that he's not too happy.

Less than two months until his one year birthday! 

Out of Surgery

Gage is on his way out of surgery. Everything went well replacing the failed bio prosthetic valve with a mechanical valve. They even closed him up already which was surprising to hear.  He didn't swell up like the time before so there was no need to leave him open. They also made another attempt to ablate the pathway responsible for his SVT problems.

Like the last attempt though, they had to use the freeze method again meaning that we won't know if they were successful until some time has passed. It would be wonderful if they managed to stop the SVT and Gage would no longer have to be on the beta blocker meds anymore. One less medication for Gage would be a big plus.

In Surgery

Gage went in to surgery this morning around 7 AM PST.  It takes some time to prep, so they probably didn't start operating until about 7:30.  Kristy sent me a text stating that he has just been placed on the heart & lung bypass machine at 8:00 AM.  This means they're actually starting the heart operation to replace his valve. From what we've heard so far, he'll be getting a mechanical valve.