March Madness

Without Florida, Finley's cheering for Duke....(it helps that this is one of three shirts she can wear with her casts on!)

Riley and Toby are undecided......

Glad to be home

We are home - yay! Finley was released from the hospital yesterday and was able to get a flight back last night. Today we've been laying around mostly, emotionally letting down, I guess.
She's doing great, all things considered- grandma even had her laughing this afternoon. Now, the countdown begins - 5 days down, 16 to go until these lovely purple beauties come off!

Update

The chest x-rays came back last night....Pneumonia. They can not treat her with steroids, as it interferes with tissue repair (ie skin grafts). So, for now, it's breathing treatments and antibiotics. We have to stay until at least Saturday. The weather meant to be nasty today and tomorrow, so it may not have been possible for us to get home anyhow. She sleeping less and we're starting to see her personality reappear today, which are good signs...

The respiratory dr. came by this afternoon - seems that Finley's lungs are full of "junk". She has been on a continuous breathing treatment for the past 4 hrs; has just had a chest xray; will receive additional breathing treatments every 2 hours throughout the night and he will look at her first thing in the morning. He thinks that she may have to stay until Saturday. Dr. Fearon thinks this might be a bit excessive so will discuss with him in the morning after they have both seen her. SO....hoping to leave early, turns out we have to stay at least one more night.

Everyone here has been extremely kind and helpful. We are on the non-infectious side of the peds. unit of the hospital, so basically it's us and the oncology patients.....it has been so humbling. Our worry, stress and heartache for our own baby seems so small compared to what these families are dealing with....I can't even imagine. We are so blessed.

Check me O-U-T!

Finley's doing great. She's had a bit of trouble keeping her SATs up as high as they needed to be overnight (the oxygenation levels in her blood) and ran a fever as well. They just gave her a breathing treatment, hoping that this will loosen up some of the stuff in her chest so that she will breath a bit easier and get outta here! Everyone has been very kind and helpful - they brought a wagon this morning for us to take her for a little ride around the floor. Dr. Fearon came by first thing this morning, was a bit concerned about her breathing, so will come back around lunchtime to reassess and either discharge her or call in a pulmonary specialist to see her.

Andy took these photos with his Blackberry, so that we could get them online, so they are not the best quality, but it gives you a good idea of what she's going through.

Before they casted her in surgery yesterday, he took photos of her hands. I cannot wait for three weeks to go by so that I can see them again nor can I wait for her to see them and start to use them. Nothing short of amazing. Her right (the one with one more release this time around) looks like a normal little hand. Very, very exciting.......

Update

It's nearly 11:30 - everything is going well in surgery. We've been able to call into the operating room about every half-hour for updates. The ENT started by putting tubes in this morning, which only took about 15 minutes. By 10:30, Dr. Fearon had seperated both feet and he was working on the right hand. He had said this morning that the x-rays were just what he had expected with her hands.....the right foot had less fusion than he usually sees. We just checked in again, they are putting the casts on now (purple, per Riley's request) and expect to be completed in 10-15 minutes......nearly two hours sooner than we expected and the news from the OR is that everything went very well!!! We'll post more when we can - stay tuned!