All – quick update. Oakes had one of his rougher days of late. They weaned him all of the way off the vent to the point where the machine is only acting as a backup, but we’re still days away from extubation. Oakes reacted a little rough to the weaning mostly because he’s more awake and less sedated than he’s been in weeks. So he would get frustrated and try to cry and his numbers would obviously get worse. Becky and I visited around 2:30pm and right when we walked in Oakes got really ticked off and started to struggle to breath. Becky was petting his head and Oakes started to turn blue. The nurse was a bit flustered which got me really flustered. She asked the doctor for help as she couldn’t figure out what was going on with the ventilator, so while they manually pumped air into Oakes’ lungs, they realized one of the tubes had gotten knocked loose. Once it was re-attached, all was well again. Scary!
What is also causing issues is that Oakes has another bacterial infection in his trachea related to the plastic ventilator tube. This is one of the reasons they want to get him off the oxygen asap – the risk of infection. This is his second infection in the trachea. They are giving him some antibiotics to help, but the infection is not helping is breathing, especially when he gets upset, but hopefully this is very short term.
We talked to one of the main transplant doctors, Dr. Grady, as well as Dr. Lee, Oakes’ cardiologist, and Pegi, the transplant nurse coordinator. The entire team met this morning at 7:30am CT and decided to move forward on the process of putting Oakes on the transplant list. This was expected. So if all goes well, he’ll be on the list as of tomorrow.
We’re still in wait-and-see mode related to other surgical options before or instead of the transplant. We just have to get Oakes off of the ventilator entirely, see how his veins and heart reacts to that and monitor everything with various tests to help tell the story of what is going on inside the little man’s body.
That is the latest from the STL.
Love,
G,B,I,O
Greg,I want to personally thank you for your detailed updates. I feel as though I am right there with you both. I understand how difficult it is not being able to hold your little one,as I have had 2 premature babies and long NICU stays. Oakes seems to be a strong little fighter and he will continue to amaze all who know him. Stay strong and I offer many prayers to you all. Please keep updating us as you are able. I know it is difficult but appreciate the time you take to send this for all to read. Many wishes...Kelli Tranchina Sharpe
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