Saturday, June 4, 2016

Out of the PICU!

Gracie moved off the PICU unit yesterday afternoon. We are now on the 6th floor! Our room is bigger and so very nice and Gracie is enjoying the big TV, extra space, and cheery lighting. I'll be sure to try to post a picture of our new digs later today.

I'm sorry for not posting sooner, but we have been working very hard since the move. PT has visited us several times and we have been working on transferring from the bed to the wheelchair and bedside potty chair. Gracie has really been enjoying her wheelchair time and she has become a master at using the wheelchair to get around the unit. We've had some trouble being comfortable on the potty chair so she is not very happy when we make that transition.

Her pain control has gotten somewhat better and we are now mostly taking our pain medication orally. I'm not sure if it is quite as effective as the IV med, but we are working on adjusting it to maximize comfort while avoiding too much sedation. She is still pretty grumpy most of the time, but we can hardly blame her considering the painful nature of her procedure and recovery.

Right now, we are focusing on getting her ready to be discharged to the Ronald McDonald House. This will entail addressing her bathroom needs as well as transfers to and from her wheelchair and also into and out of our car. This also requires some tweaking of her pain medication and appropriate timing  for these transfers. Please continue to pray that we get her pain under better control in order to be able to do this. Her cooperation is vital in these processes, and her fear of the associated pain is complicating our efforts.

Our Ortho doc has come by to visit every day, and he has been pleased with her progress so far. Gracie is doing great in his eyes, so we are constantly encouraged by his praise. We are so thankful to have such a caring medical team here at U of M and we cannot praise their efforts enough.

In other news, we have been receiving so much awesome mail from you all and it has really brightened Gracie's mood during these tough days. In addition to her wonderful cards coming in from all over the nation, she has gotten some very thoughtful gifts from special friends as well. We'd like to specially send a shout out to Adelynn and Dancy, our transplant buddy Rylie, and Mrs. Maryanne for sending such fun surprises! We'd also like to shout out to Five Points Elementary back home in Lake City for the huge packet of cards we received yesterday! What a surprise!

We're hoping to be able to start working on our map soon so that we can get a visual of all of the places our many cards have come from. Thank you all for your thoughtfulness in taking time out of your busy lives to send a card and prayer for our sweet girl. She is enduring so much and we appreciate the support from all of you- those of you we know and love, and those of you we have never met but love anyway. Its a constant reminder of how wonderful the people of this world really are. Thank you all for the smiles you have given our baby in her time of trial. We are so very blessed to be touched by each of you.

No comments: