Tuesday, July 6, 2010

Ixnay on Epstay OoTay

*Deep Breath*

Well, that's it for Step Two. As I posted previously, I've been administering Propranolol to V under the direction of a surgeon and her pediatrician, in hopes of shrinking the hemangioma on her eyelid, and it's been making her very, very sick. She's screamed for hours each day in pain. She's had every awful stomach-related side effect you can think of. Its been...bad. And uncommon, to my understanding. Though these are listed as possible side-effects of Propranolol, I'm told that most people tolerate the medication fairly well. I guess most people taking it are not 12 weeks old though. The tragedy of it is that it has shrunk the growth some. Shrinking it completely may take weeks or even months though, and there is a distinct possibility that it will only grow back once she's off the med. That information, combined with the amount of misery she's been in helped me make a decision to move on to the terrifying prospect of surgery - terrifying for me (and James), but in the end, less traumatic for V than weeks or months of feeling this way. Over the weekend, I started weaning her off of the Propranolol. I've been corresponding with the oculo-facial plastic surgeon, Dr. N this morning, and he gave me the go-ahead to stop giving the medication altogether, for which I am eternally thankful. I'll hear later this morning about scheduling an MRI for her, which will require sedation and intubation. The surgery looks like it will be on Tuesday, August 10th. Please pray for V and please pray for us, that we will have courage and discernment to make the right decisions and to see this through to its conclusion.


tracyannc said...

Thinking of you all!

Becca B said...

Just wanted to tell you that I am thinking about you guys...I know all to well what you are going through and I hate that you have to do it.

On a random side note...when Truman had his MRI they were able to avoid sedation by strapping him into this straight jacket type of thing. It looked horrible but he actually was so cozy that he fell asleep which I guess is what 90% of kids do. We were at a Children's hospital so I don't know if they do it in normal hospitals or not...but it could avoid at least one sedation maybe?

Big hugs from Kansas!

Jaimey said...

Hugs friends! I'm sorry you are having to deal with all this and that you had to make that decision. grrr. Hopefully the surgery will take care of it quickly and easily and all will be well soon. Love and hugs!