"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Saturday, October 5, 2013

Busy Busy

What a day!

Charlie's oldest brother turned 5 today. We celebrated by eating John's favorite meal over at grandma and grandpa's house: shrimp, pork steaks, roasted broccoli, sweet carrots and chocolate cake. This is a 5 year old food snob!

Our MOMS Club sponsored a bake sale benefitting Charlie today too! Charlie spent a few hours there smiling (ok - sleeping) at the patrons. We had a chance to meet and visit with a heart transplant recipient who happened by the table. It was wonderful to talk with him and hear his story. It was an awesome happenstance. We honestly can't believe how blessed we've been in this journey. Our friends, family and more than a few strangers have more than stepped up to the plate! I was in tears as I left today.

Tonight was a little rough for Charlie. He's been a tad bit "dusky" and pale the last two days. This evening he was inconsolable and irritable. His eating has been erratic (at best) today. He just didn't seem himself.

When we checked his saturations he was only in the high 60's and his heart rate was higher than it has been in three weeks. Since he had been fussy most the evening this wasn't a huge surprise (he typically desaturates when he's crying). After trying a few things to get his sats up on their own (a.k.a. resolve the fussiness: pain meds, gas meds, bottle, burping) - We resorted to administering oxygen. His pink color came back quickly and his saturations s-l-o-w-l-y came back up to the low 80's. It took nearly an hour and half to get his heart rate back down to a "almost normal" pace.

Charlie is sleeping peacefully in his bassinet now. We'll continue to monitor him throughout the night as he wakes up to eat and tomorrow throughout the day.

Monday is our next cardiology appointment and another echo. We're hoping that the valves in Charlie's heart have slowed (maybe stopped) their leaking and that his aorta shows no further signs or narrowing. If those things happen we should get a full month before we have to return to the cardiologist! And it means we most likely won't have to schedule Charlie's cardiac cath until December or even January.

Prayers that tonight was just a fluke occurrence and Monday yields good results are appreciated!

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