Guess who came came out of his paralytic over 24 hours ago and has been doing unbelievably well? You know it, its our Mighty Amazing Oakes!!
So Oakes has been paralyzed for weeks now and every time his team has tried to lift his paralytic, within about an hour he is struggling, his numbers look awful and I have been asking, "When are you going to turn it back on?" because it is miserable to watch him work so hard and get so upset. Yesterday morning they turned it off, and as the hours passed Greg and I, as well as several members of his team that were here yesterday were in a bit of shock. Actually at rounds at the end of the day, Dr. Egtastady said that if he could he would have done a back flip. The rest of the week was pretty crummy, so this has felt unbelievably amazing!
Ena came in town yesterday. Here she is with her Ortyl grand babies!
Ena, Isla & two baby pumpkins!
Sweet Isla with Oakesie!
Getting to hold my awake baby and just loving it!
Praying for an uneventful weekend without paralytic. Monday, Oakes will go to the OR with Dr. Huddelston for another balloon dilation. This week they discovered that now both airways, both bronchi, have narrowed so we will go back to have both left and right bronchi dilated. We also learned this week that our amazing Dr. Huddelston is leaving St. Louis Children's Hospital in a few weeks. I have felt devastated, but am wrapping my head around the changes that are about occur. We will spend time on Monday at the end of the day with several of Oakes Dr's discussing where we are and what lies ahead.
Again, praying for a boring weekend. Praying for a successful trip to the OR on Monday, and praying for strength for Greg and I as we go into this meeting on Monday.
We are also praying for Isla and Oakes' Great great grandmother Moore who passed away last night. We will also pray for Grandpa Dale and all of the Moore family as they say good-bye to such a strong and amazing woman. We love you, Grandpa Dale!
An Update to the update: Not Only is Oakes awake, but he has been giving me huge smiles!! LOOOOOVE it!