Today was a half way good day today!
Tyler wasn't in the greatest mood, about 15 min before we got to U of M.
I swear that kids whole personality changes (for the worst) when it's a hospital day. Issues with inserting the IV for ECP doesn't help the mood!
We started out at blood draw at 10:30am. Anything I suggested wasn't what he was going to do, but we got through it.
Then we went to clinic. We had a new young doctor helping out the BMT doctors, Dr Andrew Harris. We met him on Halloween when we stopped up on 7Mott (in costume). He is very nice and funny! He grew up here in Ohio not to far from us. He gave Tyler a complete work over, checking muscles and coordination etc. He and Tyler talked Ohayocon ( anime convention in Jan) and Boon Dock Saints movie. They had a lot to talk about. We also seen Dr Kitko. It's been awhile since we got to see her. She thought everything looked pretty good and they also said his counts (the ones that were in) all looked really good.
Then they figured he should get a flu shot. What a look I got from Ty. But he went through with it, but wasn't happy about it.
On our way out Tyler discovered his lap top power cord wasn't in his bag soooo... we ran back to blood draw and up to clinic to see if it had fallen out there. Needless to say it wasn't either place. So another bad attitude, he's sure somehow it was my fault, he was still working on why ( reasons were pretty bad). I'm sure I didn't help because he was fiddling around with stuff in blood draw that he didn't have time to do and my suggestions went on deaf ears, so it kind of ticked me off. We were running around looking for this cord, plus dealing with attitude... and we were a little late for ECP. Oh by the way, later we dicovered the cord was left at home because he forgot to pack it when we had told him to make sure to get around because we were going to leave... oh well.
Today we had Eileen for ECP and she got a vein right away! YAY Eileen!!!! Everything went real well there and that helped his mood somewhat except for the fact he couldn't use his laptop because the battery lost its charge right away.
Once we left up there about 5:15pm he was in a better mood, we weren't. My hubbie forgot to get the parking pass validated so it cost us $6 for parkig!!!!
Oh well, tomorrow is another day!!
By the way we talked to a really nice family again today at ECP. Chris and Frank's daughter Laura had anaplastic anemia and had a transplant. She had 2/six month long stays at the hospital ( other stays also just not as long), 3 week stint in PICU and cGVHD and has done 200 treatments in ECP!!!! Poor kid has been going through so much, her mother told me it has been 10 years of all this! I had a very nice time talking to Chris today, we have more in common than what I thought!
Throw some extra prayers their way.
I am going to try to put some pics of Tyler's costume on today or tomorrow. It's pretty good!
Thanks for checking in
Kelly
