Tuesday, October 26, 2004

Little T's coming home!!

We're very excited because Little T's most likely coming home on Friday!!!! Well, as long as his blood pressure stays low enough. He's going to continue to need medical care at home. We're going to take care of his Broviac, give him 5 different medications at home, wrap and unwrap the bandage on his arm and give him massage and range-of-motion exercises. He will also get his blood tested twice a week at the Hematology clinic and will continue to receive transfusions as needed on an out-patient basis. He's down to about 1 transfusion twice a week now.

With all the medical care he needs, we're also scared. C is most scared about his Broviac, because it's a central line down to his heart and he has to open it every day and flush Heparin down it. I'm more scared about how I'm going to take care of him with all he needs and Special K. He's going to have a lot of doctors' appointments and physical therapy. Right now he gets fed every 2 hours 24 hours a day due to his reflux and nausea.

Special K burst into tears when we told her Little T was coming home, and expresses unhappiness whenever his homecoming is mentioned. OTOH at home, she'll finally get to do all the things we told her a big sister can do, like hold her baby brother, dress him and give him a bottle. I'm also scared that something will happen, and he'll have to go back to the hospital again. I know it'll all be okay in the end, and somehow we'll manage, but right now we're anticipating and waiting, and we don't yet have the joy of having him home.

So having said how much work he is, let me tell you some great things about my little boy. He's almost 6 weeks old and already is his own little man. He's very strong in spirit and body. His heart has always handled the big extra load that his condition and all the transfusions put on him. So he must have a big heart. He has a tough grip and good head control for a baby of his age. He's usually very calm, and gazes at you intently in a way several nurses have said is "very engaging." Few things bother him and he gets a lot of unpleasant stuff done to him. For example, he doesn't cry if he gets his Interferon shot and sleeps through it if he's asleep. But if he has a dirty diaper, or is hungry, you get about 30 seconds to fix it before he starts crying loudly. My friend Jenny gave me his horoscope today and according to that, he's a Virgo, so perfection is important to him.

So that's my update, which I know is briefer than usual, but we still have a lot of little errands to do before he gets home and I have to go pump now.

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