Charlie has been earning more frequent flier miles at the hospital. They should really start a program, and give parents parking discounts after a certain number of hospital visits!
Charlie is home now, and he's fine. This past weekend, he had a fever, and on Monday night it spiked to 103.4. I was hoping to wait til morning to bring him in, but around 10pm I ended up taking him to the ER. With his fever so high, he wasn't going to sleep anyway, so there was no point in waiting. In the ER they gave him some ibuprofen, and then admitted him for fluids (he was dehydrated) and observation. By the time we got up to his room (4am), his temp was 98.4! That little stinker. I got about 30 mins of sleep that night. In the morning he still didn't have a fever, so I thought we'd go home. But during rounds they decided that since he still hadn't started his sildenafil, they would start it in the hospital because 1) it's easier to get insurance to cover it and 2) the medicine will put him into congestive heart failure, and the hospital doctor thought it would be best to watch him when we started the med. I was a little surprised, since his primary cardiologist - the expert in PH and the one who actually did the cath - thought he should start it now. Charlie had an echo done at the hospital, which didn't show anything new, but something about it made the cardio change his mind about starting Charlie on the sildenafil. He said it would make him very sick and he should only have it a week before surgery. So...we came home today, after a 2-day hospital stay that ended up being the most expensive dose of ibuprofen ever.
I will be calling Charlie's cardiologist in the morning to check in with her about the sildenafil. We still don't have a surgery date - I don't know which person is dropping the ball on that one. Charlie has a follow-up at his ped's office tomorrow. He's been having repeated fevers for several weeks, and no one knows why. So it's another thing to look into. ...yaaaay.
The GOOD news...my boys are awesome! Charlie is growing bigger and stronger every day. He's picking up signs too! Also, he likes to roar. It sounds a little like a newborn lion. :) Brennan finally started really talking. He said his first word when he was only 8 months old, and said a few words here and there. But he wasn't REALLY talking until the last few weeks. It started a few months ago, when he started saying "more" and "uh-oh" all the time. Now he's saying new words every day! It's adorable. He says some out of the blue, like when he ran across the room, picked up my keys, said "Keeeeey" and then tried to leave! Brennan likes to practice words over and over again, and he's pretty pleased with himself when he pronounces a word correctly for the first time. He still uses sign, and his vocabulary is growing. He'd learn a lot more if we taught it to him better! We need to do a better job at that, especially for Charlie. Brennan has picked up a few signs from watching Signing Time, and he gets all puffed up when he learns a new one. A recent one was "bear". He loves his teddy bears! He has a favorite that he sometimes pushes in Charlie's swing. He also makes this bear bounce bounce bounce by holding the top of it's head and bouncing! It's super cute. Brennan also puts the bear on his bouncy turtle and bounces his own little bottom up and down. He cracks me up everyday. :)
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