Ya know when you go into a game as the underdog, not expected to win, but at the very minimum you are going to at least compete. Your entire heart is on the line. I always have the mindset to win. I’m extremely competitive. “So you’re sayin’ there’s a chance?!” Bring it on. You try to temper your mindset to not be SUPER disappointed if you do indeed lose. But, it is nearly impossible. At least it is for me. I’m a forever glass overflowing mindset. The last three years have MORE than tested me, but I am still who I am. People that call themselves “realists,” in my opinion, are pessimists. There’s been a lot of sorting through a lot noise and chatter. It’s great to have and listen to opinions and speculations. That’s part of what makes us individuals. But, even when gaining scientific possibilities from the brilliant 862 providers that all have hands in Luke’s care, it is up to us to discern it. I say possibilities because even after 55 days in the hospital, we have no definitive diagnosis. We know it isn’t relapse. We know the pneumothorax happened due to a respiratory therapist not knowing how to run the IPV machine and blowing holes in Luke’s lungs. We don’t know the extent of the damage it has done, physically and mentally. We don’t know if he has graft versus host disease from transplant. We don’t know if his fibrosis is reversible (duh, it is).

Tuesday we were transported with an airlife team, via ground, to University Hospital. They were fabulous. It was a quick and efficient trip two blocks away. I came away from it with a fast friend who cares for us and this journey. My parents came to be with us at the hospital for pre, during, and post surgery. We then started the pre-op stuff. I’ll spare you those details.

I trekked to check out the cafeteria with my parents while Luke was in surgery. I have priorities and was hungry. 🙂 When back in the waiting room, his anesthesiologist first came out to talk to us. “Luke did great, he did not need intubation… but Dr. Musani will be out soon to discuss the rest that didn’t happen.” Dr. Musani followed within a minute with a resident. He had worked and worked blocking off different branches of Luke’s lungs to locate any holes, tears, leaks. He aggressively blocked off several at the same time and the lungs still showed an air leak. There is more than one (probably many) leaks but very very small and distal. Too far down for valves to be placed. We talked at length with Dr. Musani about next steps, if we were to stay at University or go back to Children’s. Or go back to Children’s, consult with Luke’s primary team, then transfer back to University. It’s all political, insurance, and best care practices combined into one big clusterfuck. Dr. Musani has a great plan in place for Luke to get his lungs to stay inflated and get the stupid chest tube out. Finally, it was time to go to post-op and see my boy. As he was coming out of anesthesia he smiled at me and said “so…what just happened?” We had done so much planning and research and moved mountains to get to this point with so much hope that this was an answer. Needless to say we were all disappointed, yet faithful. I told Luke the surgery was unsuccessful.

We spent the next 3 1/2 hours in post op recovery in a tiny space surrounded by 3 curtains. The guy to our right was vomiting non-stop and could only moan and puke. The guy to our left said the tip of his penis was so swollen that he couldn’t pee. He had to pee to go home and discussed at length which cheeseburger stop he and his wife would make, once he peed. I related to his cheeseburger debacle. We had random nurses pop open one of the curtains often and say “Still waiting on transport. We don’t know when it will be. OK, transport will maybe be in the next 3 hours.” I finally said, “Please don’t come to tell us you have nothing to tell us, until you actually have something to tell us.” I’m positive I was a bitch but I don’t care. I was also in touch with our posse at Children’s and they had received ZERO updates, except from me and my backdoor channels. They weren’t aware we were being transferred back the same day. That wasn’t THE PLAN!

At 6:00 PM, fric and frac showed up to our curtain cube. No suction, no directions on where we were even going. They didn’t know where they parked. The main guy was a jolly lil fella but Luke would have been safer with me transporting him back in a little red wagon along Colfax with a bag of meth. One of the nurses had to walk us and the transport “team” back to wherever they parked and took us straight through the 3 waiting rooms of the emergency room. A 6′ 3″ 19 year old on a stretcher cruisin’ on through. She had gotten a call on her phone when I realized what was happening. I turned to her while she was still on the phone and said “So you are taking a bone marrow transplant kid with lung issues who is neutropenic through the ER?” I was fuming and just hopped in the back of the ambulance. In my head I told her to fuck off. Fric and Frac had it from here. They did his vitals and tried to do his blood pressure on his arm with the PICC line. Sweet Jesus.

We settled back into Children’s with our peeps. Decompressing from the events of the day and the last 54 days. I can’t really imagine what all was going through my babies head after all of this. The anxiety of the surgery and all the prep in a new place. Coming out of anesthesia and hearing it was not successful. Listening to the grievances of other patients. Seeing his Mom go into fight mode because that is what has to be done. Having the anesthesiologist give you several lectures about too much pain medicine. Parading through a hospital on a stretcher with so many eyes staring at you. Coming back to Children’s the same as you left. Unexpected. No real plan moving forward.

We woke up Wednesday ready to shake rattle and roll. Luke’s oxygen needs had suddenly dropped. He needed less oxygen. Amen. He had more energy to get up and walk when he was allowed. We went around and around and around. We had a big meeting of the minds conference and came to the conclusion, with Dr. Kohler in agreement and still captaining this ship, that the absolute BEST place for Luke to receive treatment for his lungs was at University Hospital. We have to get his lungs under control first, and then address anything left with transplant back at Children’s. We had the blessing of his entire transplant team as well as Pulmonology. At 4:30 PM, upon me providing Dr. Musani’s personal cell phone to BMT team (sorry Dr. Musani), and finally connecting providers, it was decided for Luke to try “wet sealing” his chest tube. It is equivalent to a heimlich valve in the adult world. (GTS if you must. Google that shit). We had tried this numerous times in the last 54 days and it had been unsuccessful. It is basically cutting off his chest tube from wall suction. With x-ray we measure if his lungs collapse with reaccumulation of air, or if they are able to stay inflated on their own. At 12:30 am, today, I was discussing with Luke and how we are being the underdog here. I was NOT going to get my hopes up. I was 100% OK knowing we would wake up in the middle of the night with the xray showing failure. I was trying to set my mind, and my sons heart, for NO MORE DISAPPOINTMENT. As humans don’t we all thrive on expectations? We also had the discussion, again, how I was thankful he didn’t have any valves in his body. There were no foreign objects we had to go back and take out. There was a reason. There is a bigger plan. I have lost my faith many times along this journey but have found my way back. This time felt different. I believed it. Although disappointed, it felt more like a relief. There was something else coming.

We had 3 x-rays throughout the night and early morning. Each one showed stable. They completely clamped off his chest tube and thus far x-rays have showed stable. He is showing healing without any mechanical intervention. Cautiously optimistic for sure. Don’t walk under any ladders, don’t let any black cats cross in front of you.

In less than 18 hours we have gone from care conferences with the smartest docs saying Luke would be unable to heal without surgery, to talks of discharge. Tomorrow morning’s xray will be imperative to the next steps. The power of prayer is undeniable. The grit my son continuously shows is astounding. There is no other way.

Phuckets of prayers,

Suz