Blog

To read about Gage's story from the beginning you may visit http://gagejohnsonisafighter.weebly.com where mommy blogs.

Doing Very Well

Gage watches his favorite show Mickey Mouse Clubhouse while receiving his formula feed. Mickey is one of the only things he'll sit still for.

Gage watches his favorite show Mickey Mouse Clubhouse while receiving his formula feed. Mickey is one of the only things he'll sit still for.

Gage has been doing very well. He has gotten much better at drinking from his sippy cup but only the kind that pours out. He will not suck out of the spill proof cups. Everyday he walks a little further and crawls a little less throughout the day.

He loves practicing at the step near our kitchen. Not mom and dad's favorite thing to see considering the whole issue of falling while on blood thinners but he doesn't know that. Try telling Gage no and see what happens.

I think that's actually Gage's philosophy on life and shows why Gage is so tough through this congenital heart disease battle. Gage refuses to let obstacles stop him on his journey.

Home And Doing Well

Gage was discharged Saturday afternoon after 24 hours without an SVT episode. It seems that an adjustment to the med controlling his SVT was needed. Since he left Boston, the dose had intentionally not been increased over time because we were hoping to see Gage grow out of the SVT problem. He proved that SVT has not gone away.

Since he's been home everything has been normal and he was extremely glad to be back home sleeping in his own bed. He slept through the night only waking a few a couple of times. Up until his visit to the E.R., he had been waking up closer to six times a night so it was obvious last night that was worn out from those rough nights in the hospital.

Last Night's E.R. Visit

Gage remains in the hospital after having a second episode of SVT with a heart rate of 240 bpm just before he was about to be discharged. 

An E.R. Night

Gage woke up crying at about 12:30 tonight. He was very upset and Kristy noticed something wasn't right. With her hand over his heart she could tell immediately that he was in SVT. We got out the stethoscope and confirmed it. His little heart was beating so fast we couldn't even count it. When Gage stopped crying and there was silence for a moment I could hear his mechanical valve racing even with my ear inches away from his chest.

By my count I got 21 beats in the first four seconds. I couldn't keep up. Do the math though and it's about 315 beats per minute. Not his record high if I recall but higher than he's seen in a while. I had just given him his dose of Sotalol at 11pm. It's been the only drug capable of controlling the SVT up until tonight it seems.

Kristy is taking him to the E.R. now.