I called ahead and asked them to wire the hospital with wifi for me
but they didn't.
We are here
and getting into a routine
which involves a lot of coloring and painting
But he's cute.
So he's worth it.
The monitors are calibrated to go off when certain levels fall below acceptable rates
which when you are Joshua
It's big fun.
His O2 sat's are at around 65%-70% when he is sitting around
and they fall to 55% when he tries to walk around.
He's doing great though.
Amazing in fact that his body has learned to compensate so well.
He has a very awkward gait and is quite unsteady on his feet.
It's a bit of mystery to them at the moment but the diagnosis they are running with is malnutrition and perhaps a Vitamin D deficiency and/or a mild case of rickets.
He is having a head MRI this afternoon just to rule out an neurological causes.
The doctors just finished their morning rounds and the word of the day in regards to his heart issue is
I just have to say that again cuz it sounded so good.
Mountain be moved.
My God is bigger.
This based on the results of the echo he had yesterday.
Now we wait for tomorrow
cuz tomorrow is heart cath day.
And that's the biggie.
We will have a definitive answer tomorrow afternoon as to whether he is operable or not.
He is as sweet as can be
a little withdrawn at times
but being treated like a rockstar.
He's a bit of an anomaly because they just don't see 7 year old's that have survived this defect
which means we have met pretty much every med student that works here.
I am trying to find a balance and a rhythm
but so far I am failing at that.
I haven't eaten anything besides the crackers and snackage I brought with me because I don't want to leave him.
He gets very nervous when I step into the hall just for coffee so I haven't figured out how to go all the way down to the cafeteria yet.
I'm sure I will figure it out but in the meantime Goldfish crackers and I are besties.
That's all for now!
I've been gone 3 minutes....we'll see how he did.
I am going to try and update every day now
because I'm a girl
and I'm Sonia
which means I have a lot of words that I need to get out each day.
I'm in love!
4 hours ago