It was a long exhausting day today but just wanted to make a quick post to say that all is going well. Audrey is stable and resting in her ICU room. We have started weening her off of the Lidocaine drop so by mid-day Wednesday she should be back to only the two medications she takes on a regular basis at home. She started eating some light foods and clear liquids again late this afternoon so we are hoping she'll regain even more appetite tomorrow morning. She has been remained tired and pretty grumpy throughout the day and cries very loud everytime a nurse or doctor attempts to check anything on her but she seemed to get a little better when she got some juice and cheerios in her this evening.
Dr. Ackerman came by and thought she looked great and was doing excellent. We are hesitant to get our hopes up because we know how quickly the situation can change but he estimates that she'll be able to return home on Friday. We'll see.
While here we have been fortunate to meet a nice family of two 1 year old twin boys that both have the exact same gene mutation as Audrey. Crazy to think that of the documented roughly 20 cases worldwide of this specific case, there are 3 of them in the Rochester ICU right now. It's been really interesting to learn about each other's experiences thus far and I'm sure we'll continue to be resources for each other in the future.
- Mk
From Claire:
ReplyDeleteI love you guys. I have been praying for all of you. Little Audrey is an amazing child with pretty amazing parents!! Thank you for keeping us updated. It means so much.