Wednesday, July 20, 2011

Update on Hope's Hospital Visit

Hope is still at Motts since her admission on Monday. She has had a lot of tests done and everything came back normal, which is good, but frustrating. Yesterday, neurology started a long term EEG. They are hoping to catch one of Hope's breathing episodes during the monitoring. The EEG could last over 24 hours and then after that they may do a sleep study. It looks like Hope could be there a few more nights, but hopefully that will help them find some answers.

Hope is very thankful for everyone's thoughts and prayers and she is doing her best to tolerate all the extra attention.

Hope laughing with her mom during her EEG

Tuesday, July 19, 2011

Hope's Hospital Visit

Hope could use some extra prayers right now. She is currently in Ann Arbor at the University of Michigan's Mott Children's Hospital.

As you know, Hope has been off the ventilator and doing fantastic breathing on her own! However, on Sunday morning, Hope had a little episode where she stopped breathing completely and had to get assistance from Mom & Dad. They ended up taking her to the Emergency Room, but she had stabilized by that time and really just enjoyed all the attention from the doctor's and nurses at the hospital. The doctor's said Hope could go home and gave instructions to "watch closely", as if that has EVER been a problem!! Clearly they don't understand we can't take our eyes off this cute little girl!

Then yesterday (Monday), Hope had another episode in the morning where she just wasn't breathing. So Mom got her back up and breathing, called the doctors (as well as Dad and Grandma & Grandpa R) and the doctors at Motts said they wanted to see Hope, STAT! So everyone loaded up the car and they headed down to Ann Arbor yesterday. Hope has been enjoying her hospital stay, loving the attention she is getting from everyone, being cute, per the usual. Unfortunately, the doctors needed Hope to stay overnight for monitoring. They aren't sure what is causing these episodes so they are running more tests today and hopefully we'll have some answers soon.

Keep Hope in your prayers!

Thursday, July 7, 2011

Let's play a game

I think most people have heard of the game 5-spot, or simply "Spot the differences" where you look at two pictures and pick out five things that are different between the two. Let's play a game of that with these two pictures....

Okay let's see, what's different? What's that? Why yes, THE VENTILATOR IS GONE!! (Ok, well it's actually in the closet not GONE gone) and not just for the picture! Hope has successfully weaned off of the ventilator! She hasn't been on it at all for over a week now. She's done absolutely great with the weaning process and doesn't need it at all any more.

The next big step will be getting the trach out (likely this fall). Our next appointment with the pulmonologist is at the beginning of September, and we see her ENT doc in August so hopefully they will both give the go-ahead for getting the trach out!

Oh, and for those of you who really wanted to play the game, there really are 5 (ish) differences between the pictures :)