Evan has continued to be a rockstar! I apologize for not posting as much as I would like but they have kept us very busy on the floor. Evan’s sedated echo went well and he didn’t need much sedation as he spent time chatting with the nurses. One of the nurses completely fell in love with him downstairs and I swear if she could have kept him on her floor for the day she would have. He has had several visits from physical therapy and occupational therapy.
He is doing well with his feeds. He had a swallow study yesterday where they put barium in a bottle with milk at different consistencies to determine if he aspirated. Evan silently aspirates which means that he doesn’t show any outwardly signs that he is aspirating. Aspirating is essentially when liquid goes down the wrong pipe and into his lungs which is not good because you can’t have liquid where there is supposed to be air. Evan came here on honey thick liquids (think milkshake) and the hope was to see if they could get him to nectar thick. He aspirated on the nectar thick but did well with a liquid in the middle of nectar and honey. We still have the NG tube and he was getting bolus feeds during he day and continuous feeds to play catch up at night. The day feeds went well but the continuous feeds were proving to be too much volume. Today, his fabulous nurse and I came up with a more appropriate feeding schedule. We figured if we could increase the amount he was taking during the day then that would be less at night. By the way, nutrition has given us a goal volume that he should have during the day so what ever he doesn’t take during the day he makes up at night. Since, he had the swallow study yesterday we were able to feed PO (by mouth) and he took 4 ounces!!! I was so proud of him and he really enjoyed his yum Yums. He continued that the entire day and this evening he will get two bolus feeds overnight. I figure we have the NG tube for a reason so might as well use it!
We did sneak in some time to take a walk down to the garden and enjoy the fresh Boston air. The weather has been very pleasant during the day and chilly at night. Evan absolutely loves being outside and usually falls asleep before we come back in.
You will notice in the first pictures he doesn’t have the nose cannula. His echo showed that his right ventricular pressures had come down so he no longer needed the oxygen to help with the pressures however he is now requiring some oxygen to help with his saturation levels. The pics without the oxygen was our trial.