Medical Update

Owen got excited when I told him we were on our way to Cardiology this afternoon. Weird kid. He loves to go to the doctor. Perhaps it's the suckers, or the stickers, or the extra attention he gets from everyone at the office.... whatever works for him, it's working for me too.

Owen's appointment was originally scheduled for Friday at 8am in at PCH. I got a call from Dr Stock's assistant yesterday and she said that he was going to make a special trip to the Mesa office JUST to see Owen. He heard about my bum knee and he also didn't want me having to lug Owen to Phoenix that early in the morning. Best Doctor Ever!!!

Owen started with a weight check that was less than impressive at 28.5lbs. All of his new motor skills are burning calories faster than I can pump them into him. It's time to bump the calories to 1500/day. Yikes. If that doesn't get him gaining, I don't know what will.

He was perfect for his EKG and his length was 37". He cried when the nurse took the EKG stickers off his chest so she gave him a new sheet of sticky EKG stickers. Those were soon stuck all over his legs and stroller. Good times.

I'm sure his echo tech was thrilled to watch "Elmo's Potty Time" for the full hour in the echo room. I will never get over how well he behaves for his echos. He just lies there with his snorty and watches a movie while the tech adjusts him, rolls him on his side and then arches him over the pillow to get up in his neck. He did say that he was done on more than one occasions, but he was easily distracted by the jumbo stuffed Elmo in the room.

Dr Stock came in after reviewing his echo and nothing has changed. It's good and bad new all at once. I always secretly hold on to hope that his echo will improve.. the function, the leaky valve, anything... so that maybe another surgery would postpone transplant. No such luck. Not today. The good news is that he is stable. I'll take stable.

His sats are a little concerning lately... he is up to a liter, sometimes a liter and a half of oxygen. His sats are barely hanging in the mid 70 range on that liter flow. When he's playing or walking (wahoo!), his sats plummet to the 50's and at times into the 40's. He quickly recovers back to his baseline with rest, but I'm seeing more blueberry boy that I'm comfortable with.

Owen's blood pressure also remains ridiculously low, but he tolerates it, so I guess it is what it is. We can't increase or adjust his meds due to this, so he is on the same doses as he was over a year ago. We are going to try to wean the Viagra over the next few weeks, the only sign I can look for that he's not tolerating the wean is that his oxygen saturations will drop. Yikes. More decreasing oxygen sats?

Dr Stock once again feels that it's best to move up Owen's cath at Stanford. If we were to do it here, we would have it scheduled for the end of the month, but we all feel more comfortable having it done at Stanford. In case something were to go wrong in the cath lab. Dr Stock will send off Owen's echo and clinic notes and I will call Stanford on Tuesday and talk to them about bumping things up from Oct to Sept. If not... at least we have things booked for October.

We have another appointment scheduled with Dr Stock in a few weeks. Until then... Owen will keep on walking! He is getting so confident on those two feet of his. We're going to buy his first "real" pair of shoes tomorrow. We are so excited for him!