Don’t grow up. It’s a trap. Adulting is hard. Parenting is difficult but the absolute joy of my life. I find joy and laughter every hour of every day. The last 52 days have been a pure nightmare, yet there have been relationships formed and nourished, lessons learned, and we hope and pray tomorrow will be a step in the right direction towards full healing…again.

My precious boy has been an in-patient at Children’s for 52 days now.

To quote a thoracic surgeon we had a consult with last Friday, “so this is more like a hostage situation.” Yup. Exactly. It has been excrutiating, frustrating, and painful.

Luke is on chest tube number 2 (remember the first one IR put in one that was too short- we didn’t realize you were 6’3). 18 days ago, 9 of the smartest people rolled in chairs around Luke’s hospital bed to basically tell us they are in a “pickle.” They weren’t sure what to do with Luke’s situation.

We had tried “water-seal” with his chest tube, which is basically turning off the suction he is connected to 24/7 as well as oxygen, to see if his lungs will stay inflated and not have air accumulate all around the rest of his body- emphysema. It hasn’t worked. I was convinced when his cell boost started working and he “engrafted” again, it would heal his lungs. Good news is that his boost is working, and his counts are looking great so far. But they have not healed his lungs. Luke is able to get up and do laps around and around the nurses stations on 7east 3 times a day. He can only be disconnected from suction for an hour a day. So we break it up into 20 minute time-frames plus bathing time. It is brutal. Using the restroom, sleeping, eating, any kind of movement, takes a PhD in tube/cord management. He does it with such patience even though he is in horrible pain and is difficult for him to breathe.

These amazing BMT doctors surrounding Luke’s hospital bed had consulted with a Children’s Pulmonologist that could perform a lung valve procedure. He had been trained on it through the company that sells the valves. One of my first questions was how many times this doctor has performed this surgery. I was expecting a number in the thousands, or perhaps high hundreds. The answer was ZERO. He had witnessed ONE live surgery. It has never been done at Children’s, as it isn’t usually performed on children, for many reasons. But Luke is a tall nineteen-year-old adult. We met with this doctor, and he is excellent. Amazing. He has been a huge advocate for Luke as we continued down the path of what to do.

Meanwhile, we have been going around and around with surgery, cardiology, pulmonology, endocrinology (Luke had to go on insulin for about 10 days), and EVERY single doctor, PA, NP, on and on and on had a different plan or no plan to try and help Luke. We are at the best place, the best transplant team and nurses EVER, but what Luke is going through is just completely out of their scope. The right hand was not talking to the left hand. Surgeons would come into our room (at 6 am) and tell us they were getting Luke on the schedule for a procedure, only to have a different team come in 30 minutes later and tell us the exact opposite. We have had “very serious” meetings scheduled to discuss Luke’s case, only to find out 8 hours later (holy fucking anxiety-ridden days) that the meeting was to tell us that they just don’t know what to do.

We have made phone calls, reached out to people, our transplant team has reached out to other hospitals for 2nd, 3rd, and 4th opinions. It took us two weeks to get a video call with a thoracic surgeon. Insanity. We are in touch with industry reps that sell the lung valves.

We have gotten opinions from National Jewish Hospital, Children’s Philadelphia, and Good Samaritan in Phoenix. Much due diligence has been done through so many people that love and care for us. This is a very small snapshot of what has been going on.

Tomorrow Luke will be transported around 9:30 am to University of Colorado Hospital. It is literally the adult hospital ACROSS the street but we have to do the whole ambulance transport thing for basically insurance reasons-CYA. He is scheduled with Dr. Musani for valve spiration surgery at noon. The way the valve works is it plugs the bronchial tube that is allowing the hole to persist and then redirecting the air to the rest of the lung that is working allowing him to get his chest tube out. Then once the lungs have healed, they will go back in and remove the valves from Luke. We will stay at UC for at least one night. Then transfer back to Children’s. Once that damn chest tube comes out, I can bring my boy HOME. Then we will start pulmonary rehab and get back to LIFE! If this surgery doesn’t work, we have a plan B. But we are ONLY focusing on knowing this WILL WORK.

Have you ever walked on a treadmill while eating chocolate chip cookies? I have. That is how backasswards this chapter has been.

No shit, we had a respiratory therapist walk in last week (which I have a sign on the door NO RT and the nurses put it in his chart daily to not come but they apparently don’t read. They come in and chat, scan his bracelet, and hand him an inhaler. SO stupid) and first thing he said to Luke was “so how’s your breathing?” I started laughing out loud. Luke turned his head and looked at me like is this guy serious? Then the RT said, “well let me ask it a different way. How are your lungs feeling?” I literally sat down and put covers over my head to not blow a gasket. When he walked out I put together the most expletive infixation improper sentence anyone could ever dream of. It ended with “you fucking dumbfuck.”

Anywho…I opened an online gambling account and Luke and I have attempted to learn about BETS. Just creating character, right? It’s my job! So far, we are UP! Half the time I don’t know the specifics of the bets I make, but gradually it is making more sense. Amazing how much more passionate I feel about a game or player when I have money on the line. Shocker. I was really pulling for the D’Backs but happy for the Rangers. We have had a few more pranks at the hospital but the statute of limitations is not up, so I cannot disclose.

Rock Chalk Jayhawk!

Mason has been very busy working and studying. He also backed his truck into a post at the end of our driveway (with trailer attached) and put quite a dinger in his truck. He was baffled when he got quotes to repair for $3000. Again, adulting. Responsibility. BLAH! Upon much research by him (youtube) and discussion over and over and over and over and over again, he decided to order the parts from the dealer and try to fix it himself. This was no small project and he did it. He did it 100%. I’m pretty good when it comes to car stuff and DIY. My brain works in that direction. Masons truck is pretty damn close to perfect. And he saved $2000! He left this morning to volunteer as a camp counselor at Outdoor Education camp. He asked me last night, “Musj with my nephews I just throw them into a pillow fort and wrestle with them when they crawl on me. I can’t do that with these kids. How do I talk to them?” OH MY HEART! I’m keeping our conversation after that between he and I. I think and hope he will have kids crawling all over him, but he can’t wrestle as hard as he does with his nephews!

Luke’s Dad and I have been able to trade off some time at the hospital being with Luke which has allowed me to be with my Mas, family, and a few friends hither and thither. I got to see Mas inducted into the National Honors Society, spend Halloween with him, celebrate my brothers B-day, cry and laugh with some friends, crash some friends dates and see my parents a smidge. Throughout the last 52 days my amazing Dad has been in and out of the hospital dealing with some heart issues. He is taking positive steps forward as well. Thankful. But, yah. Welcome to the shit show. But not for long!

Our. I only say OUR because I have to share her with her parents and Luke-oh and her twin brother I suppose. But OUR Morgan, OUR “girl,” flew home this passed weekend to see Luke. Morgan medicine. The best there is. Luke and Morgan have a relationship that is just beyond… They have been forced to grow up quickly in the last 3 years and I couldn’t pray or wish for ANYONE else to be by Luke’s side for life. Morgan, thanks for being you. I love and adore you. Your mom is also pretty damn cool. Your Dad, well, the jury is still out. JIM! And Brady, you da bomb. I love them all. Whether they like me at all, they are stuck with me. The entire Adler family has been a ROCK for Luke, Mason, and I. I cherish them.

My friends near and far. My family. Framily. I’m humbled and blown away at the service and gifts and love that we continuously receive. Someday I will share the lengths people have gone to support us. It hits deep in my heart and please know how cherished you all are. Thankful.

Buckets of gratitude from Suxanne and fram,

Sux