Make A Wish

Today when I arrived at the hospital Nick was on his way to the physical therapy room to practice walking up and down stairs. The physical therapy people are working with Nick to make sure he can do basic things that we all take for granted when we are healthy. Nick did great and hopefully this means he will be able to travel up to the second floor to his bedroom each night to sleep. Later I found out that Nick's chest CT scan had an unexpected "surprise." The doctors informed me that Nick now has air in his chest area (mediastinum) that is not supposed to be there and they are not sure how it got there. This process is called a pneumomediastinum. Nick is stable and not having any bad side effects from this air right now. It is being treated by putting Nick on 100% oxygen by a mask called a non-rebreather. The hope is that this will cause this air to go away within the next 48 hours.
Now this air had to come from somewhere...the options are a burst aveolar air sac in Nick's lung that then sealed back up (his lungs are find and show no signs of collapse.) If you get an air leak in your lung that is not good. It would be as if you lung was a balloon with a small hole in it and it would leak until all the air had gone into your chest area behind your breast bone. As the air leaks out of the balloon, the balloon collapses on itself and then it does not function as your lung very well. Generally it cannot re-expand without help from the outside. Also, the air leaving the balloon can cause problems if there is a lot of it. Now in Nick's case, the lung is not collapsed and the amount of air in his chest is small. So if it was an air leak of his lung, it was a small one and then it sealed itself off.

The other possibility would be a small hole or fistula in his esophagus, perhaps caused by a combination of factors such as radiation, vomiting, forceful coughing, and damage to the mucosal lining of the esophagus. This is not likely to be the case as Nick is eating, drinking and swallowing without difficulty. He has already had several swallow studies, but, Dr. Hallelujah came in today to let us know she wants to repeat it, just to make sure there is nothing going on there that has developed since the last test or that was missed.

Nick was more than a little bummed by this latest development, but, hopefully, the oxygen treatment will work and Nick will be back on the path to getting out of the Hop for good. We are still not sure when Nick will get the word that he can come home. There are still a lot of little issues and details to be worked out, but, we are all hoping it will be very soon. Nick's counts are rising, the only holdout being his platelet count, which is still on the low side. Nick's appetite seems to be improving each day and the IV food has been stopped for the moment. Nick is on a calorie count right now to make sure he is taking in enough food to gain back weight.

Nick will have to stay on high dose steroids for at least three months before they consider tapering his dose. The steroids are causing him to have some high glucose levels, which means he has to have his sugar checked and he has been getting some insulin when his sugars are too high. His liver enzyme numbers are climbing again. I am hoping these guys will wake up and realize they are going in the wrong direction. Nick has already had his photopheresis treatments for this week. Things went well with this part of the process, it is hard to know if it is helping or not. I know he has a nice big bruise on his arm from the huge needle they have to stick him with to get the blood out of his arm. I guess next time I'll try to take some pictures to show what is goes on behind the scenes. Have to hit the hay...more later.