Monday, November 14, 2011

Setbacks Suck

Sometimes doctors do not consider the psychological impact of their decisions.  They are so focused on getting the physiological aspects of the body stabilized that they forget that there is a real thinking, living person attached with a family and real life concerns.  They forget that if there is a setback, it means more to that patient then can be fixed with a simple, “these things happen.”

Yes, setbacks happen.  Recovery is not always a smooth road forward, especially when the injuries are as severe as some of these wounded warriors, and especially when, like Derek, he has been within an inch of losing his life.  I’ve been injured.  I’ve had surgery.  I’ve had setbacks.  I’m sure most of us had.  But most of us have not had such a long stay in the hospital.  Some of these wounded warriors spend several months, or even up to a year or more in the hospital before they are well enough to become an outpatient.  Even a small setback to them can “seem” catastrophic. 

I say “seem” catastrophic because we have to remember to look at this from the patient’s perspective.  It might not seem like a big setback in the grand scheme of things when the patient was within an inch of death for two months and now simply had small gastrointestinal problem that delayed his transfer to PM&R for a week.  But how does the patient see it? 

He sees it as yet another week in the hospital away from his family and friends.  He sees it as another week closer to the holidays that he might not get to be out of the hospital to celebrate with his family.  He sees it as another week that delays his recovery.  He sees it as another week that he has become weaker.

He sees it as another week that the two women who mean the most to him have put their lives on hold for him, and he feels guilty.

He sees it as another week that his mother is away from her other children.  He sees it as another week that his mother is out of work and unable to support the rest of his siblings and pay her bills. 

He sees it as another week that his fiancée has put school on hold.  He sees it as another week that his fiancée is away from her family.  He sees it as another week that his fiancée is not at work. 

His psychological well being suffers, and he sleeps most of the day.

Decisions made have real life consequences on the patients and their families, and setbacks impact not only the medical well being of those patients, but the psychological well being of the patient and family and the financial well being of the patient and the family members who have dropped everything to be there.  So, please, Doctors, remember this the next time you approach the family and go to say, “setbacks happen.”  Remember that when you are making your decisions.  Your decisions have widespread consequences.

That said, I have a lot of respect for the doctors who are on Derek’s team, for the most part.  Dr. Diego has grown on me.  No, he is not Bograd, and that is okay.  He is Diego.  And I love it.  He has an easygoing way about him, and I can talk to him.  At the end of the day, he came to the door and did this motion with his arms that had both Krystina and I yell out at the same time, “Go, Diego, Do!”  He stopped, dropped his head and shook it, and then said, “You guys!”  He also said we are the only family he can be himself around.  Well, something to that effect anyway [right?  ;-) – get your mind out of the gutter, he is married and it was nothing untoward – if he reads this he knows to what I am referring, and if his wife reads this, your husband is an amazing doctor, and we love him.  Hope the hardwood floors come out great].

Dr. Clifford ended his rotation today, and we really will miss him.  He was a real gem, and I think he will be a great doctor.  I also think he will miss us when he is gone!  But I don’t think he will miss the nickname I unwittingly saddled him with.  I didn’t mean to.  I really didn’t.  He has these adorable dimples in a little baby face and it just slipped out one morning when I was aggravated.  Unfortunately, it stuck.  But, back off, ladies.  He is married, and I protect married men.  It’s the mama tiger in me.

But last night that mama tiger in me almost killed an intern.  This upstart little crap walked in when Derek was very sick.  He had been sick for a couple of days, but especially so yesterday.  I called for the ASOD (intern on call – stands for something like Assistant Senior Officer of the Day), and this little thing walked in.  He didn’t glove up and didn’t approach the bed.  He glanced at him and said, “I don’t know anything about him.  We are going to wait until tomorrow morning when his team is here.  Nothing will happen tonight.”  I told him, “Here’s a concept, take a history and examine him.”  He told me he wouldn’t.  I asked him to put it in writing that nothing would happen, and of course he refused.  As he was leaving, I asked him to send me a real doctor.  I finally got the SOD (resident on call – something like Senior Officer of the Day) about two hours later who was able to put my fears to rest, but I spent the night because I was so worried.  The SOD was the other doctor who could have replaced Bograd.  I liked him.  I like Dr. Diego better, though.

The medication that Derek was given for the phosphate level had side effects.  They are slowly working their way out.  Unfortunately, it is taking its time.  And, unfortunately, it has had a deleterious effect on his psyche.

Derek is usually very positive and easy going.  He jokes, laughs, kids and takes nothing seriously.  This weekend, he was seriously down, angry, upset, not his usual self.  The details are personal, and I will not address them. 

Could it be part of the healing process?  Could it be the seven stages of grief making their way out?  I have been told that a lot of these emotions are good, and that he needs to go through this.  He has in the past.  He has already gone through a lot of this.  He has already had the anger, grief, sadness, etc.  He was at the acceptance phase, or so we thought.  Could he have gone back?  Could he not have gone through the phases as we had previously thought?  Possibly.  Could it be a side effect of the setback?  He told me he doesn’t feel like he will ever get better.  I will address this further with his team. 

By the end of the weekend, however, after Sean, Krystina and I spent days working on him, he came around.  I do not usually pat myself on the back, and I really am not good at accepting compliments (or help for that matter) but I am going to give myself a little pat right now.  Sean (who came for the weekend), Krystina and I did an awesome job.  This is what is truly means to be a brother, wife and parent.  We were there for Derek when he really needed us.  It certainly was not convenient to sit with him this weekend. 

Sean did not come this weekend to deal with this.  He wanted to have fun with his brother, and although there were fun times, he dealt with a lot of crap, too, and he handled it with a lot of maturity. 

Krystina is one of the strongest women I know.  She has stood by Derek more than some wives who have been married for years and have children with their wounded warriors.  This weekend was very hard on her, but she never wavered.  The three of us rallied around and supported Derek when he really needed us. 

Love has gotten Derek this far, and it will get Derek to the finish line.  Alright, I’ll throw the docs a bone.  Love and a great medical team.

Derek and Sean did have a bit of fun this weekend, and I am so thankful for that, because Sean came down just to see him.  Derek stuck Sean on the front of his wheelchair and they took off.  We lost them in the halls because there were too fast!  Those hallways really need a speed limit!  I almost got taken out by another WW in a wheelchair!  After he passed me, he spun around, pulling a 180, and yelled back, “Sorry, ma’am!”  I simply laughed.  It is good to see these guys having a good time.

Derek wasn’t depressed all weekend, he had his moments, and his Derekisms flowed.  When it was time to get him back to bed, he yelled out to the nurses, “Assemble the team.  I’m ready for my sleeping quarters.”  As they came in, and were taking his shirt off, he started wiggling and said, “I’ll do a little dance for you!  Take my clothes off!  Where my dolla bills at?”  Derek also told Krystina, “If you spend your life with me, you will have cripple fun and Dunkin Donuts every day.”

Derek was also in rare form over his diet.  He fired me.  I refused to order him a pizza after he vomited.  First of all, he shouldn’t have pizza because pizza has cheese, and cheese has phosphate.  I had said I would let him have one slice of pizza with something healthy when he was over the gastro problems, but when has been vomiting all day?  Not a chance.  So, he fired me.  He told me he was giving my Power of Attorney to Sean, because Sean would order him a pizza.

Derek is going to be okay.  These setbacks are hard, but they are just setbacks.  We thought we would be with the PM&R team last week, but it lasted less than 12 hours.  Rather than transfer him tomorrow, as discussed, and have him transferred back to Trauma again because the gastro problems have still not resolved themselves, Trauma will keep him until these issues are resolved.  Hopefully, it will be soon.  The phosphate level is still giving us trouble, but as long as we can keep the diet in check, which means keeping Derek in check, we should be able to manage it.

I can continue being strong, even though weekends like this feel like they are going to kill me.

To all who attended the Elks dinner tonight in Derek’s honor, thank you.  The generosity and kindness of the community is overwhelming and humbling.  We truly appreciate it.

Remember – Climb to glory.  No matter how long the climb.  No matter how hard the climb.  The important thing is the make the climb.

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