Monday, December 28, 2009

Day 2: Sinai PICU #SMA

Diana actually let me sleep most of the night last night, and I did -- like a baby - but grown up and on an awkward chair/bed thing with non-breathable fabric that makes you sweat when you're actually cold.

Emily, on the other hand, had a decent night and and even better morning. She's so pampered. ;) Her xray this morning look MUCH improved from yesterday and externally her chest looked more squared out then when her lung was collapsed. This is good. We were able to ween her Oxygen all the way back to 2.5 and she rested a bit. We had a semi-good B'day lunch for me -- and then things went south.

Emily had a pretty bad crash today and, in typical style, it was just after Diana walked off the floor. That's fine, but when she crashes it's nice to have two people. So, I yelled for help as Emily stopped breathing and her Oxygen saturation dipped into the 50's. :/ Sheesh! Thankfully we are Cough Assist ninjas and I got to work clearing some pretty serious mucus plugging out of Emily's lungs. When on the road to recovery JUNK starts to move in the lungs -- and migrating junk is like debris in a flash flood -- it's not good. In this case we were victorious and now Emily is trying desperately to get some sleep. It's not over yet, pumpkin. :/

That's the life of a family with Spinal Muscular Atrophy (SMA) in the PICU. Emily's on 3 different antibiotics and so far her blood and mucus cultures are all coming back negative. They may not reveal anything since we were on meds for a week before admitting to the PICU. Anyway, the bottom line is THINGS ARE IMPROVING -- despite how it may look, like earlier today, we are in an upward trend. :)

Thanks for stopping by.

8 comments:

Sky said...

other then the plug, it sounds like she is doing better!!! Prayers headed your way for a fast recovery!!!!

Maria B. said...

Keeping your little girl and you and your wife in our prayers...

CureSMA4Stella said...
This comment has been removed by the author.
CureSMA4Stella said...

Thinking of you Lee family and glad to hear you think she's a little better today! Hugs from Iowa

Jana Gundy said...

I haven't been keeping up lately! We will add you all to our prayers. I'm very thankful you all found a better hospital than that awful John Hopkins.

Tina said...

Our prayers continue for Emily and your family. Hospitals stink, but I am glad you are in a safe place and getting some support. Hopefully you will be home in the near future.

Happy be-lated birthday Nate.

Hugs from Chicago,
Tina, Ally and family

Paul said...

good news. Keep up the fight Emily.

Mary said...

Glad to hear she had a better day. We will keep her in our thoughts and prayers and we hope you are all home soon! Mary & Paul