Monday, April 19, 2010


Well, to say this day started well would be...well...a lie. It didn't. Will turned down extra pain medication at 3 am, which I should have overridden, but I was exhausted and sleepy, so I didn't. So, at 6 am, he was in horrid pain. We spent the next few hours dealing with playing catch up, which is never where you want to be post op, and dealing with this rapidly swelling face.

When the resident visited us to discuss pain medication at 6, Will's face seemed fine. When I helped Will go to the restroom at 8, his face looked like a balloon. Once again, no explanation, but the doctors spent the next few hours telling me not to worry about it, and I spent the next few hours thinking that the other shoe is about to fall. I wanted to scream and say, "He has autonomic dysfunction! He does NOT follow the rulebook!"

So, a nurse practitioner with neurosurgery visited us and I asked why he was fine and then two hours later it looked like he had stuffed a bag of marshmallows in his cheeks. He looked at me and told me, "I am not lying to you. This is most likely post op from the surgery." And while I had spent my whole day trying to tell them that the other shoe was falling and they weren't paying attention, I realized that maybe it wasn't falling. Maybe, just maybe, this was surgery related and maybe I could actually take a breath. Maybe I don't have to be ever vigilant because there are other people out there who are helping to be vigilant. No, they don't understand the intricacies of his care, but they are willing to listen and do what they can to manage his care. I don't even have to fight for fluids; they just told me to let them know when it was time. Really. We are not in Fredericksburg anymore, Toto!

So, if I don't have to be ever-vigilant, what am I to do? Well, apparently, the correct answer here is to cry. Which means that Billy and Will and Mica, our nurse, are a bit lost as to what to do with me. So, when a massage therapist is sent in to help Will (The neck muscles are anything but happy!), apparently they can do a chair massage for parents. Yes, this is a hospital service. (Have I mentioned yet that I really do like this hospital???) So, she massaged my very tight shoulders and I cried...again.

So here we are this far the fever has not reappeared. Will's brace was refitted in case that was contributing to the swelling, and Will is finally sleeping. Chelsea managed to have Jimmy Johns delivered to the hospital, so I ate. The social worker came by and is going to call the Ronald McDonald House since we are STILL on the waiting list...and she gave us meal cards. (Parents can order off the menu and have their meal delivered to the room with their child's meal...if you have a $5 meal card...we discovered this little service yesterday.) Dietary is working on Will's foods and is now sending a smoothie twice a day.

Here we are Tuesday afternoon. I only cry when someone sends an e-card, a greeting card, or a package to Will to show their love and support. Or when someone has lunch delivered from a non-cafeteria restaurant. Or when Will wakes up and can actually get out of bed without major assistance but one of his eyes is almost swollen shut. So, overall we have not yet had to build an arc and are surviving our little corner of the hospital.


Anonymous said...

Go ahead and cry. Salt water is healing! :) The beach, tears, by any means.

Praying for you all!

We love and miss you!!!

Angie & The D. Family

Anonymous said...

always praying...I'm glad you're crying, I've actually been praying for that. You need to let go a little and that's a good thing. God has provided such good help for you all, we are all praising Him.
The Muchlers