A Walk In The Park

Has it only been two days since I last wrote something? It seems like an eternity. My life is anything but stable or reliable right now...it seems I never know from one moment to the next where I will be or what I will be doing. It is somewhat unsettling at times, although, I have gotten used to it? Today, Nick and I had to go down to the clinic so Nick could get a CXR. Since Nick came home the air in his chest has continued to re-accumulate. Last night he had big bubbles of air under his skin and all over his chest and neck. Nick decided he should go on 100% NRB here at the house, so yesterday, I called the on-call doctor to make sure that was OK. She said as long as Nick was "stable" we could do that and come in this morning to get checked out. The CXR showed that Nick definitely has more air (fancy name = subcutaneous emphysema), but, he had no signs of any collapsed lung and since he was "stable" that he could go home. The CXR is not the best test to see what is going on, but, the CT scanner doesn't go on weekends, unless you are admitted! CRAZY....this place is driving me CRAZY!!

The bigger question is why does Nick keep getting these pockets of air. The answer seems to be because his lungs are just extremely fragile right now. The doctors are calling it "air-leak syndrome" and this is something that can happen to a rare group of BMT patients who get lung GVH and then get this syndrome. We don't know if it is fixable or reversible at this point. This "condition" along with the debilitated state of Nick's lungs is a source of anger and sadness for all of us. Nick will continue with his current therapies in hopes of a miracle cure of some sort. Right now those treatments include the photopheresis, the steroids, and the immunosuppressant medication. In addition, Nick is supposed to have "aggressive pulmonary rehab" but I don't know what that means or how it is supposed to help.

In the meanwhile, Nick has been doing well otherwise for the short period of time he has been home off and on over the last few days. I can't quite grasp the whole idea yet as we have not yet settled into any kind of a routine. Nick is eating like a champ due to the steroids and appetite stimulant. However, he has not gained an ounce of weight. I swear he has a hollow leg where he is putting all this food. Nick continues to have to check his sugar and give himself insulin shots.
He is doing great with this and with all of his medications, which are quite numerous. Nick says,


Nick has a borrowed XBox so he has been playing a lot of video games...Grand Theft Auto and Halo apparently are quite addictive, since he seems to be playing them a lot! Nick has been trying to figure out how he can start doing some fun stuff. It is going to be a challenge with the oxygen and his current physical limitations...but, we are all determined to make things happen for Nick in whatever ways possible. It may take baby steps and a lot of trial and error but, I know we can figure out ways to get Nick out and about as much as possible. There is always the infection concern, but, we have to find a balance between Nick's medical needs and his opportunity to have some kind of life outside of being a patient all the time. It is very difficult right now as we are all trying to figure out what Nick's baseline will be. Is this where the world stops and we all get off? A year ago at this time, I hoped that Nick would be well on his way to returning to a "normal" life. I hoped and prayed with all of my heart that he would be one of the lucky ones who beats the odds. It seems that those hopes, dreams, and visions for the future must be modified, adapted, changed and rearranged.

Right now I can't think too much about all that is happening, when I do I get pretty upset. I have not felt that I can really put all that I am feeling out there right now. I guess I will eventually, it is hard for me though, because I know that Nick, Kate, and lots of others read this blog and I don't know how much to say or not to say. My emotions are like a roller coaster and I have not yet figured out how to get off this ride.

I hope to channel my energies into the following areas: 1) continue to take care of Nick in the here and now...which is a full-time job, 2) work with Nick and his medical team to facilitate short term and long term plans for his current situation...I will not let these doctors just string us along on a month by month basis. I want a plan, I want second opinions, I want everything possible to be done to make sure Nick's quality of life doesn't deteriorate any further, and finally 3) I want to spend as much time as I can helping Nick do the things he wants to do to enjoy this life that we are all given and take so much for granted. I have a good list for starters like, snowballs, going to the park, going to the mall to get some new sunglasses, an Orioles game, figuring out how Nick can go camping and sit by a fire and roast marshmallows (with oxygen?), going to the beach to hang with the G-Ma, and so much more. So as you can see I have my work cut out for me...gotta get on the stick. The picture is of the Grand Teton National Park. It looks so beautiful there, doesn't it? Wyoming anyone??

“When you reach the heart of life you shall find beauty in all things, even in the eyes that are blind to beauty.” Kahlil Gibran