Tuesday, February 13, 2007
I am emotionally exhausted from today's pre-op events and really, we haven't even started. It's only going to get worse.
The Biscuit is having heart surgery on Thursday. More than that, I'm not comfortable sharing. My husband and I want to protect his medical privacy so have decided to be very guarded about what we share and where. Obviously, I've mentioned that he has Down syndrome, because without that so much of what I say here and leave as comments on other blogs just wouldn't make sense. It's a big part of where I'm coming from. And he had a congenital heart defect that has been repaired. However, that just made them able to see that there was more that needs fixing, hence the second surgery. The main problem we have is that the Down syndrome will follow him his whole life. He will have struggles that we can't imagine. We don't need strangers meeting him someday that know more about him than he does. And we don't need him to not get a job that he wants because they are worried about his heart or something. It's far-fetched, but we are doing what we feel comfortable with.
So, that is why his real name is not in this blog. Nor any photos of him. Nor his detailed diagnosis or details of his surgeries. But thank you, so very much, to the people who have asked. I can only assume that you do so with kindness and care in your hearts, and I thank you. I take it to be the blog-world equivalent of bringing us a casserole. I hope you can understand why I feel the need to protect him as best as I can while still allowing myself a place to express myself.
Today we saw the cardiologist, heart surgeon, had x-rays taken, and had his blood drawn. I knew how he would hate the blood draw, but I had not seen him sitting in the little plastic device they use to hold small children still for an x-ray. His arms were straight up in the air (holding Dad's hands) and he was encased in 2 pieces of plastic that went up both sides almost to his wrists. There was a small opening for his face, just wide enough. It was horrible. I had waited out in the hall last time on the off-chance that I might be pregnant, while my mom stayed with him. This time they had me go behind the glass so I could "stay" but all I could really do was bear witness to the awfulness of what he must have been feeling. I felt horrible for my husband because I hadn't realized what I was asking him to do when I asked him to take the day off work and come, especially since I couldn't stay with The Biscuit for the x-ray part. I just had no idea. If I had known I would have asked my mom to come with me instead.
When all of this was finally over and we got home there was a message waiting for us that they need to re-draw some of his blood so could we call them? Dear Lord. We had already made a promise to The Biscuit that he was done for the day. So I called and asked if the doctors would have their lab results in time if we came back for the re-draw tomorrow and the man on the phone was so nice. "Oh, yes, ma'am. Absolutely, ma'am." He had answered the phone the way anyone would an inside line who talks with co-workers in other hospital departments all day would, but when I told him I was a mom and that I was concerned about surgery being postponed if we didn't come in until tomorrow he spoke to me with such caring and reassurance in his voice. It was really very sweet. Too bad I didn't think to get his name so that I could say thank you. They have little pink cards all around the hospital so that you can let them know when someone does a good job. Maybe I can find out his name when we are there tomorrow.
I don't know when I'll have the time or energy to post again, but rest assured that I'll be back when I can. Tomorrow I get my haircut; one thing I am doing for myself so that at least my hair might look ok after sleeping in one of those chair/bed contraptions. I don't honestly know at this point how I'll be able to leave his room to come home and shower. Maybe this is the hospital stay where I'll use the shower they have for parents on the pediatric floor.
See you all when I get back.
Posted by Kath Youell at 11:29 PM