I've met countless circumstances working in hospitals around the US. Some happy, very many heart wrenchingly sad, and almost all are complex. The challenges of working in healthcare are a few too numerous to detail here. But, as with nearly every occupation that pits you against or alongside death and pain so frequently, we all develop a means to "cope" with our lot. Either that or we erode. This erosion can be gradual, washing away our personal peace or a sudden cataclysm that drives us from the field. For most of us though, we cope. And often, the positives can lift the weight of our burden.  Like the unknown emotional power of playing the card game "go fish".

    

    He had been battling muscular dystrophy since birth. "Battling" may not be a fair descriptor. It was just his life. All he knew. Despite the bad luck of being brought into the world this way, he was fortunate. He was not alone. Both his mother and his father were dedicated to him as perhaps only parents could be. Z was a cool kid, despite it all.

    

    From what I could tell, they had given him the most normal life he could have hoped for. The family had its quirks and flaws, but lord, who's doesn't? They seemed to have taken on the same matter of fact acceptance that this was simply their lives now. All children need love and support, and Z's need just happened to manifest more physically.

    

    The ease with which they traded "I love you's" told me that its was a fixture in their home. That is, up until Z stopped breathing. 

    

    They had decided to take a road trip to Colorado and visit their daughter and her new baby. On rising up and cresting the summit of Monarch pass (11,314 feet) Z was getting more anxious. He just couldn't quite catch his breath. Despite his father's best efforts, and the valiant efforts the tiny portable Cpap machine, he was only getting worse. He urgently needed a hospital. 

    

    Everyone knows that there is "less oxygen" at elevation. This isn't quite true, however. The amount of oxygen is the same no matter how high you go. What there is less of is pressure. The atmospheric pressure that assists in driving the oxygen you've filled your lungs with into your bloodstream drops off somewhat dramatically as you climb. Without this pressure, the oxygen doesn't cross the alveolar-capillary membrane into your blood, so you can fill your lungs with nice deep breaths and still not meet the needs of your tissues. This lack of the pressure our lungs are used to can even result in some of the fluid from our blood crossing into the lungs, resulting in pulmonary edema. (High altitude pulmonary edema or HAPE, its called). 

    

    Z was already a somewhat anxious kid. Not that he was really a "kid" when all this went down and he crossed into my life. His desease had left him quite small statured, on account of the lack of much muscle tissue. Nonetheless, he was quite scared during this whole episode. Understandably so. But getting panicked only makes the body's demand for oxygen increase... making things worse. I can only imagine the stress level in that minivan as they sped towards help. The van had made the climb slowly, due to the weight of the built in wheelchair lift, not to mention the motorized wheelchair itself. This weight made the van descend the other side faster. Count even the small blessings I guess. 

    

     I met him weeks later. His course was somewhat complex. His respiratory distress led to respiratory arrest and required he be intubated and placed on a ventilator. "Life support" as so many call it. He did slowly get better, and was extubated from the ventilator. Only, it didn't last. His body wasn't ready. He had to be emergently reintubated, and due to his anatomy, it wasn't easy. The team struggled to get the breathing tube in place as Z struggled to stay alive. I know this because he remembers it. The second time, he couldn't be weaned off of the ventilator. A tracheostomy tube was surgically placed in his neck to faclilitate long term assistance from the ventilator. 

    

     Anytime a "breathing tube" is in place, either an endotracheal tube or a tracheostomy tube, you can't talk. There is a balloon on the end that is inside you that serves as a cork to keep the breath from the machine from escaping out of your nose and mouth. Because there is no air passing between your vocal cords, you can't talk. Only if you can tolerate deflating the balloon, or cuff, so some of the air can "leak" past it and through the vocal cords can you talk. 

    

     I met Z after he had been in my hospital a month already. He already had his trach. He hadn't really spoken to his family since that day driving over Monarch pass. Living on the edge of life, a part of only one sided conversations and unable to move his own body. He was trapped. More so than ever before. It was supposed to be a quick road trip. He was supposed to meet his nephew... but kids aren't allowed in the ICU. 

    

     This is where my friend's and I came in.

    

     There is so much that can be done to keep someone alive, even if their body has given up. But the true art of the care that we can give in the ICU is something else. Millions of gallons of ink have been spilled detailing medical assessments and interventions, but what this family needed was support. We take our critically ill patients on myriad diagnostic "road trips" to the CT scanner or MRI (...or Interventional radiology or Nuclear medicine or...) so why not take this poor guy out of the ICU so he can meet his nephew? That's what a dear friend of mine finally asked. She was an amazing nurse before taking on an educator/manager's role. Thankfully, she never lost the perspective of what it's like from the bedside. Once she had the idea to get him out of the hospital room that likely had started to feel like a jail cell, the rest of us immediately got on board. 

    

     With the appropriate monitoring and support staff (which does take some coordination to pull together) we brought him out to the family waiting room not far from the ICU's doors. Bed, IV poles, ventilator and all. That's where met his new nephew. Seeing his face change from its somewhat timid, concerned baseline to real unrestrained joy is something all of the staff involved will not likely forget. It was a testament mostly to how fully and selflessly Z could still love, even in his own scary situation. He's a pretty inspiring young guy.

    

     With precedent set, we started coordinating a trip for him as often as we could. Up to the flight deck to see the view of the Grand valley, down to our little museum on the first floor, or just a spin out behind the hospital to get some sun. The trips got easier once he was stable enough to go in his suped up wheelchair. But clinically, we had stalled. All attempts to get off of the ventilator had met with failure.

    

     At this point, he already had a tracheostomy tube, as we knew the road to getting off "life support" would be a long one. So our next goal was to release some of the pressure from the balloon on the trach tube to allow some air to pass through his vocal cords and allow him to speak again. This is also a small step toward "liberation" from the ventilator. His anxiety made this quite the arduous task. His fears of the respiratory failure he had already gone through, coupled with his profound weakness and the simple fact he hadn't felt air passing through his upper airway in quite some time made this an intimidating prospect for him. Each day we'd try to coax and reassure him through a few minutes longer with the cuff deflated. 10 minutes a few times a day, up to 15 minutes, then more sessions each day. Our speach language pathologists worked with he and I not only to assess his phonation and swallow (as they do) but to distract him and entertain him. We slowly worked up to a single hour long session. He was unsure and scared when the day came, and wanted a timer in his view so he could keep track of exactly when it would be done. 

    

     In my time working with him I had learned distraction was the key. It was his anxiety more than his repisratory needs that dictated our day. So, we had concocted a plan to play some games to keep his mind off the task of the day. The speach therapist of the day came to the table with an ipad of sorts, with a few trivia based games that were perfect. We were all on a team together, basically playing family feud vs online players. The speach therapist couldn't stay with us the full hour- only a few minutes actually, so it was Z and me with his mom and dad. It took quite a bit of refocusing and reassurance to get through the whole hour, but we did it. He did it. But, much to his dismay, we had set the bar. We proved he can make it an hour breathing with the cuff down, receiving less support from the ventilator. Now that's the least we can expect. Soon, we'll have to beat that time. 

    

     This went on a few days with a good bit of protesting from Z, especially now that he could talk - at least while the cuff was down. But just a couple days after our initial win of making "the hour", we had found a simpler game, that he had obviously played with his parents before, was even better. Go fish. A plain deck of cards, the constant contact from mom holding his cards and playing on his team, the competition to beat his dad, and me there to assure him that "all the numbers looked good" from a medical standpoint. The nursing staff and speech therapists couldn't dedicate a solid hour, they were just too busy. But I got to bear witness to the most beautiful display of love I have seen in a while. His parents doing anything they could to get him through this, and he reluctantly trusting us that this is for the best. Each day's trial started a bit anxiously, but on this particular day, we settled into the game within the first 10 minutes... and it just became normal. Nobody watching the clock, just a family being a family. It could have been in a living room, at a folding card table, just after thanksgiving dinner... or any other circumstance than in an ICU with a tenuous hold on life. Hearing him endearingly call his dad a "jackass" when he started loosing, and the free laughter that it caused... we were somewhere else entirely. And I got to go there along with this wonderful family.  

    

     Those are the times when you really feel lucky, or fortunate, or blessed to do what we do.