It’s Not Always About Me

This week has been one to remind me that life is not always about me. I know that seems like an obvious statement to most but when you are a "cancer patient" it's very easy to begin to think only about yourself. Let me explain.

When you're first diagnosed your entire world seems to shift on its axis. Like literally. Okay maybe metaphorically but it feels literally. When I first got that call I was waiting in the radiology waiting room from Dr. Brockbank and he broke the news to me rather than making me wait, I had that room spinning moment. It rocked my world. That continued for sometime as I later met Heather and shared with her the news and later my family. It's pretty obvious that for time this was pretty much all I could think about.

Then has I got my wits back to me and my head wrapped around this diagnosis I shared it with the world with my post titled “I choose to live.” In the weeks following there was a massive and wonderful outpouring of support from so many people, and it's in that time that it's very easy to fall into the habit of thinking only about yourself. When everyone is providing words of support, offering help, and just generally caring about you. During this time I was very concerned that with all attention pointed at me that my wife and my kids could easily get forgotten. But thanks to some wonderful friends and a supportive neighborhood many looked directly to those important people in my life as well. This is their battle too.

This year has been a crazy one. That's probably putting it pretty lightly. Okay pretty significant understatement. Between starting the year with a disappointing CT scan, continuing treatment that ravaged my body, totaling our van, cycling accident, massive surgery and the subsequent recovery, losing than finding my camera gear, and lots of little events in between it has been like a walking calamity in our lives. I have simply gotten to the point that I don't even want to mention when there is some "small" adversity because it just seems silly and somewhat embarrassing. We've always been the ones to go out and help others, and to receive help from others is not only foreign but often difficult. We are stubbornly self-sufficient and generally speaking pretty good at it. But help you have, and so many have made a difference in our lives to help ease the burden.

This last week has been here yet another difficult one. I've only shared it minimally on my Instagram and Facebook stories because as I mentioned before I've been reticent to share yet another medical mishap in our family. But a good friend counseled me that I need to continue to write and share both the ups and downs of this crazy thing called life. And this time it’s not about me.

For those that do not know how her oldest son Taylor is severely disabled. When he was just days old he stopped breathing in our home and we rushed into the hospital. Through a series of unfortunate events and undiagnosed seizures he continue to have problems while they slowly admitted us to the emergency room and eventually flatlined leading to an extended period of cardiac arrest and not breathing. Subsequently he had a stroke and has lived his life with severe brain damage. His life is been full of far more hardships that he deserves, but he is a sweet loving so and a part of our family. Caring for Taylor and his unusual needs has been a normal part of our family life and typically he does fine aside from his regular health challenges.

In month ago Taylor experienced a fall at his day program. While transferring him for a needed diaper change he had a seizure and lurched out of the arms of his caretakers landing face first into a table. He damaged two teeth pushing them into his jaw. The dentist wanted to see if the teeth would descend and heal on their own, but after two weeks concluded they would not. The teeth were surgically removed and it was discovered they had in fact chipped and broken a portion of his jaw. This entire time Taylor understandably was having difficulty eating or drinking, but we were manually pushing it to keep him going. Heather took him in for some IVs to get hydrated and we continued the effort post surgery. The hope was he would recover from the pain days after surgery and get back on track.

Fast forward to another week and a couple days later and it wasn’t getting better. It was getting much worse in fact. Poor kid was hurting. Taylor’s natural reaction when in pain or discomfort is to wanting to just curl up in a bean bag and sleep it off, refusing to eat or drink. This is always a struggle when he’s sick, but this was getting perilous. He was obviously getting dehydrated and losing weight of his already small body. We decided he needed to get an NG tube installed to make sure he was getting necessary nutrition.

NG tubes have to be done in the hospital in this kind of situation, and they were going to want to run tests on his current condition. Knowing he was not in good shape we chose to take him to UVRMC in Provo versus closer options as they would be better equipped for it if needed. Heather took him in via the ER and it was quickly determined that he was worse off than we hoped. He was soon moved to ICU and the hoopla began.

NG tube placed via x-ray clear to his small bowels

Sodium was very high, potassium low, other blood work askew so the treatments were quickly underway in a measured fashion to try and bring those back into balance. He was a sick young man.

Back for a moment about me, this was Thursday, right before I was supposed to leave for St. George to complete my long planned and worked toward Century Ride. I was ready to call it off and stay to help handle the situation, but Heather being the amazingly supportive partner she is said no, I needed to follow through on that goal. So I was off for a weekend trip with a couple of good friends to go ride the 100 miles in sunny St. George. I felt stupid doing it, but I agreed. Taylor would be under good care in the hospital and our two girls at home would be ok and had activities of their own.

Through the weekend Taylor was slow to respond to treatment, and rather than get more lucid and happier he slowly slid into a constant sleeping state. When I returned I started the tag team shifts with my wife being in the room with Taylor to convey information to each new shift, to interact with him and assist in his care. The first nurse in ICU I met made the connection that we actually knew each other. Out of context and years since last interaction I’m terrible at remembering those relationships until the the light goes on. Great having such personal connections and wonderful care from someone you have shared history.

Taylor’s numbers improved and he was subsequently to a regular hospital room early in the week, but his condition didn’t really change. He’s pretty much stayed asleep the entire week outside of a few minutes here and there of waking. We’ve gotten some stretches of hours, only to return to much extended periods of sleep. The doctors ran a myriad of tests from extended EEG to look for sub-clinical seizure activity to a vast array of blood work. In the end while finding some things off here and there, they didn’t find anything conclusive or what they felt was a cause of the extended sleep. Mostly, he’s just in a deep recovery mode and wiped out is the conclusion. Considering it’s been several weeks of pain for the guy even before this hospital, it’s pretty understandable he’s feeling just a bit tired. But a week solid of mostly sleep is still concerning.

I’m writing this Saturday morning while in the room with him. This morning we worked him through a clean up, long bed bath and actually keeping him awake long enough to “force” feed some scrambled eggs in him, he’s actually pretty awake. Tired and curled up, but opening his eyes quite a bit and making his typical sounds. That’s some good news frankly.

Talking to the doc this morning we are targeting a Monday release to a rehab center. The thought is he needs some extended help with physical therapy and to work his way back to some sense of normal movement, eating and routine to get out of this state. But that doesn’t need to be in a hospital and while we’ve done this at home he likely needs some heavy duty assistance and training for a short while at least. I think it’s a good move and hopefully will be good for him.

Despite us not making much known about this situation, many have reached out wondering how they can help. At this point there just hasn’t been much we can see needing. Sadly we’ve been here before and we kind of have the routine down. Taylor’s health has been fragile his whole life and while not frequently, hospital stays have happened. While others could come and sit with Taylor, at least during the hospital period being able to convey important information about his health, medical situation and participate in his care is really best served by Heather or me for obvious reasons. Our girls at home have done well to take control of their days, and we’ve managed our shifts so I spend the morning with Taylor then home in the mid afternoon to be with the girls a bit and parent there while Heather takes over at the hospital. It’s long and taxing especially for Heather, but we’ve been able to work it out. When he moves to the care facility there may be more needs on our part to be there and assist in his monitoring and care. We’ll see how that goes.

Mostly we just care for Taylor and hope for his improved and quicker recovery to kick in. We hate seeing him suffer, especially knowing he has so little cognitive understanding as to what’s going on. Seeing some glimmer of alertness today and willing to let me get food in him and almost, just almost taking a drink on his own is a good sign of hopeful moves in the right direction. Time will tell.

So there it is. The Hall family in yet another situation this year. We’ve had a doozy! We wish we had pushed the medical intervention earlier or acted on his non healing damaged teeth quicker, but no changing that now. But as with all things, this too shall pass and hopefully we’ll come through having learned something and do better at whatever it is we need to in the future. Let’s just make it a goal to finish out the year without anything else significant…m’kay? ;)