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That is what I fed to Nicky this evening.

We are going in to CHOP tomorrow morning. Early, early. We’ve got an 8:00 appointment for a perfusion scan. They’ll hook him up to an IV and push some radioactive dye into his blood stream. Then they’ll use an X-ray like camera to take pictures of his chest. The pictures will show us how well the blood is flowing in and out of his lungs. We are pretty much doing our part for science, here. It is not going to influence our diagnosis and treatment of Nicky, as everyone is agreed that VEPTR is Nicky’s only option. However, a before and after scan of Nicky will make it easier for them to make these treatment decisions for children in the future.

Nicky is worried about the IV. The last set of IVs he had were in the hospital and he *hated* them. Its hard to sensibly explain that he was so doped up and in pain and uncomfortable and shaking anesthetic last July that we shouldn’t really use that time as the example to which all other IV scenarios are compared. So we talked about how Momma gives blood all the time and this is similar and that he will not have the IV for long and that they’ll numb up his hand before inserting the IV and that they will not put him to sleep and that the pictures of his lungs will be really cool. I suppose the pictures will be interesting, but lets not kid ourselves — its all damn invasive.

Worries or no, I didn’t let him go to sleep in my bed tonight and he is in his own. No tears so far.

After the perfusion scan we’ll pop up to orthopedics and they will slip us in. We were supposed to have a 7:50 appointment with orthopedics, but (despite what the receptionist tried to tell me today) there is no way we can do orthopedics at 7:50 and the perfusion scan at 8:00. So, we start with the scan and they’ll fit us in at orthopedics. Then, we’ll stop by and see the pulmonologist — assuming its not too late. He wants to visit with us, but I don’t think its a requirement. It might be nice to talk with him about the results of the perfusion scan, though. Hopefully we are all done in time to pick Noelle up. I’m worried about the lack of an official appointment time at orthopedics … they are the kind of department that run an hour late on the first appointment of the day.

We’ll be up early and drop Noelle off with Angie at about 6:15 am. She’s excited. She packed her Home Depot apron in the car weeks ago. Apparently Angie wears an apron when she makes breakfast in the morning and its Noelle’s job to help when she comes over, so Noelle needs to bring her apron to be the same as Angie.

I’ve got my set of questions for orthopedics. I guess I’m as prepared as I can be. Its so big, you know. So big. For the most part I try to live in the now in regard to Nicky’s medical issues. No sense worrying about the worst cases … he is my beautiful, loving, empathetic, sweet, brilliant son and will be no matter the success or failure of surgeries. My subconscious doesn’t seem to be taking orders from my conscious, though — I’ve been grinding my teeth at night. Its time to take the bull by the horns and make a plan.

Oh my, its 11:00. Time for me to finish off that document for work and go to bed, so that I can get enough sleep to wake up at 5:30 tomorrow morning.

This entry was posted on Thursday, March 22nd, 2007 at 10:00 pm and is filed under Family, Noelle, Nicky, My Valley Of Love and Delight, Medical. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.