We be good. Everyday I can see Luke getting a little bit stronger. It is a slow progression but going in the right direction! Hard to actually see major progress due to it being specifically his lungs. They take a long time to heal especially due to the fact he is still on many prescriptions, a major one being steroids. Steroids work against healing. I actually had no idea how damaging steroids can be on ones body. I only had Mr. T, Hulk Holgan, and Arnold Schwarchenegger in my head when thinking of steroids. That just aged me.

This morning at the crack of dawn (at least I think it was the crack of dawn-I’m still so mixed up from daylight savings time. Happy hour at least comes early), we left for an appointment at National Jewish Hospital in Denver. We saw a highly regarded (aren’t they all) adult pulmonologist. We all, Luke’s Dad was at the appointment as well, very much liked her. She pushed back a bit on all the meds Luke is on and why. It’s a lot and trying to bridge what all has happened and why, is clearly difficult. No one has been able to yet! She hadn’t been able to actually view Luke’s CT’s bc there was of course a hiccup in requesting records. I’m guessing she will have them by end of day.  She could read all of the reports and thought perhaps he did not have fibrosis or if he did, it would be minimal. WHAT?  I asked her for confirmation of what I heard twice. She wants new imaging to see where we are at now. Luke will have a CT next Thursday at Jewish.  I’m sure she and Kohler will talk soon. She was very thorough and both Kohler and she will work together to treat all possibly things going on with Luke’s lungs. We also will go back in January (he’s on a wait list) for an oxygen test-basically so insurance will approve a portable concentrator for him. I am now a certified oxygen tank refiller upper, troubleshootin mechanic now. It is a lot of stuff to keep rollin’ around here. The pulmonologist thought due to all the meds he is on, they are possibly preventing him from coming off oxygen completely. Meds are also there for the possibility of GVHD so there has to be some teamwork. She said his lungs sound completely clear except at the top where he COULD have some fibrosis or inflammation.  Very difficult for them to really heal when on steroids.  I think I may have mentioned that. So, we are positively optimistic.

When we got in the car, I once again confirmed with Luke that what I did hear, I did indeed hear. He heard the same thing. About an hour after digesting the appointment I said out loud, “Wait, ummmm, excuse me but HOW IN THE FUCK did we go from someone mentioning the possibility of a lung transplant to Luke maybe not having any fibrosis?” So, there’s that. I’m a forever optimist and of course when it comes to my babies, I’m an extreme optimist. But I did hear what I heard. I didn’t make it up.

We are heading back to Children’s this afternoon for his weekly labs, x-rays, dressing changes, and appointment with Dr. Kohler. I hope to report more great news later. Tomorrow I will go with my Dad to his doctors appointment. Thursday I am leaving the country, literally. So, if you need anyone to ever take you to a doctor’s appointment, don’t call me. Joking. Just put me maybe third on your list!

Buckets of gratitude and lots of attitude,

Suz