Sunday, October 30, 2011

rolling in the right direction

Alex was all about getting out of bed and riding in her wheelchair and her new zipzac chair. (A special shout out and thank you to all who came to the bowling fundraiser and those who donated to Alex's equipment fund to make this possible).  Her new chair was delivered a few days ago and we just couldn't wait for her to try it out so we brought it to her. 

Alex did well overnight Saturday and had a great day today.  She is sounding better and finally moving in the right direction.  Please continue to pray for her healing and safe return home.

Saturday, October 29, 2011

Weekend update

It's a ghost town around here on the weekends compared to the hustle and bustle of the busy weekdays and looks like we'll be spending the weekend here. Alex continues to take steps back and the docs are a bit baffled with how to treat her illness. They know she has a viral component and she's being treated for pneumonia although it's inconclusive if that's contributing to this mess at all, but she's at high risk regardless.

"It's complicated" they tell us. Her treatments includes everything from oral steroids to chest physiotherapy (to help mobilize her secretions) to bronchodilators to suctioning to EzPAP treatments (positive pressure lung expansion therapy to help open her airways). We've been staying busy and Alex has been tolerating all her treatments. She's been happy and moving all around the room in her wheelchair.

Our medical team has been amazing and we are staying on the floor I work on so we are thankful for that. We know Alex is in good hands and we pray that she starts to get better this weekend so she can go home soon. Off to bed since we have such early mornings here.

Thursday, October 27, 2011

one step forward, two steps back

Ryan misses her big sister

This virus is still taking Alex down and our hopes of discharge today quickly faded this morning when she woke up sounding like a washing machine. She is still having a hard time managing her secretions and airway so until she can show the docs she is making some improvements she is stuck here.

The highlight of the day was during rounding when about ten doctors crowded in around her bed and she said, " I want it please, I want it please." When I asked what she wanted and she had the attention of everyone in the room she said, "hold the iPad." The Attending had an iPad she was using and everyone thought that was so funny she knew what it was. Who says a three year old can't advertise for Apple?


The view out of our window is one bright side of being here

Wednesday, October 26, 2011

Nice to meet you

Miss Alex was in good spirits today and making lots of friends. All of the nurses and staff have fallen in love with her. She has been the sweetest little patient (I know...I'm bias) and is doing well for being confined to her room for 3 days. Anytime kiddos have a viral infection they are put on precautions while in the hospital and are not allowed to leave the room. This definitely doesn't stop her from rolling right up to the doorway and talking to everyone who walks by.

We did see some improvement today and if she continues to do well tonight we may get to go home tomorrow. Ryan is not sure what is going on and has been out of sorts without her sister at home. This is the first time Alex has been in the hospital since she was born so it's an adjustment for all of us. Jimmy and I are taking turns staying at the hospital and going home with Ryan to sleep. We are looking forward to all being under the same roof again soon.

Tuesday, October 25, 2011

and she's back

After taking a two year break from the inpatient medical unit, Alex finally made a triumphant return. What started out as an annoying cold turned into a visit to the emergency room, 3 visits to her primary care doc and finally her own big girl bed at Children's. We are on day 16 of this illness and we are patiently waiting for her to turn the corner.