Yesterday, Evan met Taylor Swift! Ok, met is an overstatement but she did say ‘hi’ to me as she walked down the hall in the BCH CICU and I am almost positive that she noticed Evan’s adorable pictures I have hanging on his crib. I got a tip from another mom before his first surgery to hang pictures so that doctors and nurses can see your baby when they are feeling well. I have to say that Evan is still cute as ever even with everything he has going on. I have invited countless nurses, doctors and support staff to come back and visit when he is awake and feeling well. They are all so excited to play with him and see him smile! I know I can’t wait to hear him say ‘Ma Ma MA ma MA ma ma ma.’. Having Taylor Swift on the unit really changed the atmosphere in the unit yesterday. The nurses and parents were buzzing with excitement and you knew some patients were surely experiencing joy having her there especially the little boy she came to sing a duet with. There are many famous people who visit BCH but according to the nurses they usually don’t come to the ICU instead they visit the patients on the floor who are more aware so this was a rare treat.
Evan continues to do well. He remains on the ventilator and will probably be on for several more days. The doctors have assured me that this is not out of the norm after a procedure like Evan had. They are still treating pulmonary hypertension with the nitric oxide (NO) and he is on minimal settings with the ventilator. He is tolerating his feeds and they are going very slow. They have decreased his paralytic medicine so that he can start waking up but as you can imagine they do not want him wide awake and moving around so he will still be getting medicines to keep him sedated and pain free. He has been referred to as ‘Rock Star!’ by several doctors today. The plan over the next couple of days is to wean him off of the NO as well as the ventilator. I tell him every day how very proud I am of him and to keep up the good work!