Yesterday was fast-paced, full of phone calls, driving, tests, admission to the hospital, talking to 300 doctors.
Today? Crickets. Yes, I know it's Sunday and nothing happens on a weekend in a hospital.
So I have worked on making life here more bearable. First, I figured out how to get the internet up and running. (They have a pamphlet that shows how to do it, with user id and password (case sensitive). Problem? It's not right. I go to the nurses station and ask if there's a secret or if it's been changed or anything. She tells me, "You have to type it EXACTLY like it's there." To which I tried not to be snotty back. Anyway ... I played around with it long enough and actually landed on the right combo! (Yes, I told the nurse later.)
Next? We got one sleeper bed that will work for tonight.
Then? Discovered there's a Wendy's on campus and it was not too far away. So I dashed down and got us all sorts of food. Kaley and I ate only one meal yesterday (lunch) and didn't get breakfast today. So we were hungry. Thankfully there's a microwave and refrigerator.
So with access to the internet, a place to sleep and lunch in my belly, what more could we need? Snacks, toys and a bed for Kaley. There's a Target around the corner! Never left the baby and Kaley before with no supervision. (And I've only left them one time WITH supervision.) But we were in need so off I went.
45 minutes later, I was back with all we need (and a bunch of stuff we DON'T need).
|Manny with a new PlayDoh Dog, Kaley took the picture |
|Not singing, he's crying... but 2 minutes later, he was sleeping through the CPT vest|
I guess I should mention ... this is a teaching hospital (associated with a college) so lots of people in various stages of learning are coming through. There are pros and cons for sure. With a regular hospital, you get one specialist, usually well trained and having specialized for a long time. They have BTDT. They know the way things go. But the other side is that they have limits to their knowledge/experience. There's only one point of view and if the person isn't willing to learn, they won't. With a teaching hospital, you get a multitude of ideas, thoughts. But you also feel like you're educating people (Hand holding a bit). And you have to tell the same story 100 times. But ... personally, I like this type better as I find it easier to work with hungry "young beavers" who are looking for a way to impress their boss versus working with an "old dog" who won't learn new tricks.
The interesting thing about Manny is .. his diagnosis and current condition are pretty rare. So lots of people want to come and take a gander. I was told there are only about 100 kids with Merosin Deficient Congenital Muscular Dystrophy in the US. So most of these people have never seen and likely will never see another case of it in their lifetime. And at a teaching hospital, that's a big deal. Then throw in the unusual anatomy and current GI complications, he's a virtual jackpot! (I've been thinking of Grey's Anatomy a lot during this visit as it's about a teaching hospital and their up and coming surgeons ... the people I am dealing with.)
Anyway ... it's bedtime and we got Kaley's airmattress blown up and she's happily laying on it tonight.
As I was getting ready for bed tonight, it HIT ME! The answer has been right in front of me all along. As I sit here typing this tonight, the irony is very strong.
Maybe I should just let the picture speak for itself.
So every night that we've been in the hospital for the past year as he's been suffering, I've been wearing this shirt. Prophetic? Maybe. I've been praying for answers ... and I had one with me all along! Now I'm wondering how many other things are RIGHT IN FRONT OF ME that I'm missing.