Saturday, April 28, 2007

Yesterday Katlyn's line wasn't drawing back any blood so they decided to use this blood thinning agent in her lines. This whole idea made me really nervous, but they assured us that they used this stuff all the time. So they put 0.5 ml of this stuff in the main line and we waited an hour and drew it out no problem. After that we gave her her antibiotic intravenously. They came the second line. Because the line is a bit smaller, they only put 0.4 ml this time. So we let that sit in the line for about an hour and then the nurse came in. She could get that stuff out but still couldn't pull back any blood, so she decided to leave it in for a bit longer. There is a two hour maximum on this stuff being in her lines but the doctor said we'd only do an hour. Anyway, after two hours the nurse came back in and couldn't get that stuff out at all. She tried everything. When I spoke with Katlyn's doctor today I let him know that I wasn't exactly thrilled about the idea of this stuff sitting in her line. He said he wasn't either and actually thinks the stuff was infused. This makes me so nervous because this is a blood thinning product. There's no reason to thin Katlyn's blood. So today she got a little bit of blood taken to test and see if that stuff has had any effect on Katlyn. If it hasn't, then everything is okay. But if it has, we will have to infuse a clotting agent. Yeah!!! I know it is very important to have Katlyn's line open because we need it, but I think we should have gave up after the first hour with the second line. I think getting a little to sure about removing that clot was foolish. Anyway, what do you do? Hopefully there is no problems. We'll find out in a couple of hours anyway.

Katlyn is doing very well. Her doctor had a meeting yesterday about her gene therapy. He let us know that so far everything is in the clear for the gene therapy. He said there are still some tests that need to come back, but he really doesn't expect any surprises. And yes I almost forgot, Katlyn had a little bit of a rash when she first got here, but we figured it out and now it's all gone. We think it was the baby wipes we were using from here. The are actually perfumed. So I went out and got her some very sensitive ones and now the rash is all gone. She is developing so beautifully. She seems to be adjusting to this hospital very well. I think she has a lot of fun running around this room. She gets awfully disappointed if there is ever a reason why we have to take her off the floor. Like for instance, if someone walk right in here with no booties on. Sometimes that happens. Like this morning for example the kitchen lady brought Katlyn's meal tray right in the room and didn't even read the sign first. It was unfortunate, but we just cleaned the floor very quickly afterwards and Katlyn was back at it. She is so funny. Actually, as I've been writing this message on her blog she has come over and stole the mouse from me and is now playing with it on the floor--like it's a truck or something. ha ha!!

I have been feeling a bit better myself.I'm not really in pain that much today. I'm just uncomfortable. Hopefully that will all be fixed on Tuesday. I was talking with the surgical coordinator of urology and she told me she already go a pre-approved letter from our insurance company. This is great. Now I know the procedure will actually be done this time. The surgery will be done at 10:45. What they do is send something like sound waves up there and hopefully they break up the stone. If it all works as it should then I should be left with sand. That's easy enough for me. I just can't wait for all of this to be over and behind us. My job is way to important taking care of Katlyn, to be slowed down this much. I got stuff to do.

So Johnathan went on the shopping trip in Washington with the Children's Inn today. I think he will have a lot of fun. He was hoping that they would at least drive past the White House,but I don't think they do. I think they are going to a completely different end. Anyway, hopefully while he is at the mall he remembers to pick up a memory card reader and hopefully that will allow me to do what I need to do to get some pictures on here for everyone. Here's hoping. I don't think he will forget since I reminded him about 50 times, but I think I'm scared it won't work. I'm going to cross my fingers.