Greetings,
We had the mother of all days today. Ty had a training day today so we had to scramble to get everyone taken care of..My mom and dad took Amelia, Nathan and I over to Ochsners for her appointment. Well the day started off with an unexpected stop! As soon as we got off the causeway (24 mile bridge for my northern followers that was stop and go traffic hell in itself ) Nathan had a funny look on his face as no sooner I had asked him if he was OK...he threw up all over himself! No extra clothes after all he is 6 and we haven't had extra clothes with us in quite some time. So I told my dad to get over so we can get to Kmart to buy him some new clothes to wear...oh joy. Me the bargain hunter got lucky and found him a really cute set with Cars on it for three bucks, my kind of deal!! Any way get him changed and get on our way again and still manage to make it to the doctor for 9:30 exactly!
Things go great at the doctors visit, find out that her platelet count is 35 (WOOOOHOOO for that) Doctor gives me a pat on the back for knowing what I am doing with her and this disease....which what he was talking about is that he has had FA patients before who did nothing to try and save there child's life they buried there head in the sand and refused to do a Bone marrow transplant...I really like Dr Ducos and I like that he listens to me and respects the fact that I do "know" what I am doing and that I stay on top of things with FA! So after a little discussion with him...we talked some about androgens and he help put my mind at ease that I am making the right decision in NOT putting her on them...there is just not enough data out there on their long term side effects and the out come of transplant after being on them.
So off to the hospital we go, we got Amelia checked in at the Pediatric IC unit and get Nathan settled in the sibling play room...they asked if she wanted Versed to help calm the nerves....BIG mistake, only we wouldn't find this out till later. Any way long story short...Tried to get an IV started. This child is the hardest person ever to try and get an IV started on . They couldn't use any in her arms because they were all still blown from Tuesday when we tried to get blood drawn!!!Uggghhhhh So they tried of all places her feet 4 sticks and about an hour later that was it just stop sticking her! Everyone agreed the OR would be the place to do it....problem is we need to wait till her veins get better and they have to schedule it.....so another trip over there and probably two days missed of school!
Needless to say at this time it is about 2:00 and none of us have had anything to eat...so we are all starving. But the "funniest" thing was Amelia on the versed...let me just say it doesn't agree with her...she was mean and trying to kick me, she was screaming and crying, I am so glad that it has worn off and she is back to her sweet little self!!
Now I have a massive headache and I think I'm gonna go watch some TV with my little ones!!!!
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1 comment:
Wow - what a day! We've had the puke thing before too. It's so sad for pukey boy and so gross to try to clean up!
I'm sorry the Versed reaction was so bad! Emma used to be like that after waking up after taking it. Once she screamed for 45 minutes after. They had to give us a private room to lay her down so she could scream and thrash around. I'm so glad she's no longer like that. That's no fun Amelia was like that!
As for transplanting, it does sound like you are very educated on it (hmmm...especially since you've had one already go through it!). Though, in the gentle defense of parents who have chosen to not transplant, I can totally see why. Each child is so different and some have higher risks for it to go bad. Maybe that was how their children were and they felt like the longest/happiest life for their child would be to not transplant. It's a hard decision regardless of the end decision and it sucks we are all stuck having to make it!
Hope you're feeling better! And that Amelia is back to normal;-)
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