Tuesday, December 20, 2016

Managing Procedural Pain: Moving from Theory to Reality - Part 2

I wanted to follow up on my post related to Russell's Heart Cath.  My first post talked about all of our preparations prior to his surgery.  If you remember a year ago we thought we had a great plan as well and the results were not exactly fantastic.  Far from it.

So how did we do?  Now that we also have lab results back I can share that as well.

The lab results are all two thumbs up.  No indication of organ rejection.  All indicators are nil...nada...nothing.  Also negative for viruses which are a real concern for immune suppressed transplant patients.  So we are really happy about that.  Although we know Russell's health has been great...when you perform these tests there is always the anxiety that is associated with it.  It's nice to get a clean bill of health.

So the other big question was...with all of our preparation and worrying how did the day go?

It was a very interesting day and a very different experience.  At Pre-Admission Clinic we had a great discussion about the sedation plan and the anxiety leading up to the procedure.  We spent a lot of time on the anxiety issue.  Kids who are as medically "experienced" as Russell carry a lot of baggage with them when they go for these procedures.  Especially, given that this procedure has never gone very smoothly.  We (the Doctor, Susan, and myself) did a deep dive into Russell's chart and discussed why we thought things didn't work in the past.  Russell was present for this discussion, which I think is important.  Never underestimate what kids comprehend.  They may seem like they are not paying attention...but they are.

Our day started with our arrival at Children's Hospital at 6:45 AM.  The game plan involved doing the minimal poking and prodding when we arrived at the day surgery unit.  The day unit nurses would do basic vital signs and that was it.  We also utilized video games as a distraction to make the waiting a little more bearable.  That worked very well....thank you Minecraft.  When the time came to take Russell down to the Cath Lab we stopped at the waiting area and did not go into the lab. The cath lab is essentially an operating room with lots of unfriendly machines.  Not an inviting environment and obviously quite intimidating.

In the waiting area were several beds.  We got Russell comfortable on one of the beds.  The anesthesiologist setup monitors to keep track of Russell's vitals and then he prepared a cocktail for Russell to get him settled.  The Dr used an oral sedation to allow Russell to fall asleep with some pharmaceutical assistance.  Russell takes oral meds very well because he does it every day - twice a day.  Getting him to drink the med was very easy.  The plan was to give the med and just sit back, monitor his vitals, and wait for him to fall asleep.  The Dr told us this should take between 5-15 mins to take effect.  At 20 mins (and Russell still playing video games) a second dose was prepared and given.

Our son "the stoner".  Picture taken
20 mins after his first oral dose 
of Ketamine.  
The anesthesiologist commented that he had never given that big a dose to a child before.  Just another vivid reminder that our son is not the average patient.  He is extremely drug tolerant given his past medical experiences.  After dose # 2 was on board Russell started to show signs of being drowsy.  The anesthesiologist, with our permission, started the IV that would be used to administer the balance of the anesthetic throughout the procedure.  Russell went "out" completely calm and without any commotion.  This was a complete and total success.  However, this process was time consuming from beginning to end. We probably spent 30 minutes at this.  This is where I have to give the medical team, who were anxiously waiting to get started, a lot of credit for being incredibly patient.

So part 1 of our adventure was a success; he was out.  Now we wondered how he would react when he came out of the anesthetic.  This is where we got into real trouble last year.  Our anesthesiologist suspects that Russell may suffer from post op delirium.  Probably a result of his traumatic medical past and his age.  Knowing what it was, didn't make us feel any better but it was nice to know we had someone trying to understand what was going on.  Our Dr gave Russell an extra dose of med prior to heading to the recovery room (PACU).  The idea was to let him rest in recovery and very slowly wake up.  Wow...was that effective.  Usually, Russell is in the PACU for an hour and then back up to the day ward.  Not this time.  Russell was asleep for the full hour in PACU and was giving no indication of waking up.  Again, our medical team was extremely patient.  They didn't let Russell out of PACU until he was awake and we waited nearly 2 hours for that, and no one was rushing us.  In addition, given our esteemed status and Russell's reputation for waking up rather grumpy, we had a private room reserved for us in the PACU.  So our extended stay in the PACU was quite comfortable.

Russell was still fairly stoned when we finally got up to the day surgery ward.  It is sad for a parent to admit this but Russell was actually quite hilarious in his intoxicated state.  Because of the breathing tube that was in place during the surgery Russell's throat was a little gravelly.  In his intoxicated state he reminded us a of a belligerent little drunk.  I feel kind of bad now...poor little guy.

When we finally went home at 6:00 in the evening (after our 12 hour stay).  Russell still couldn't walk straight.  He got the 5 star treatment with a wheel chair ride down to our vehicle.  Even when we got home he was still very unstable or as Russell called it "wobbly".  By morning he was great and began running around like his old self.  He took the day off from school but by mid afternoon you would hardly have known he had been in hospital.  Kids are extremely resilient.

What did we learn?

Keeping in mind that this is our 8th or 9th day surgery it is a little frustrating to admit that after all this time it seems this is the first time we got it right.  Every year seems to have provided a new challenge.  We not only are dealing with a very wary patient we are also dealing with one who is growing up as well.  Kids change so fast as they grow up.  Every year when we do this we are dealing with a very different little boy.  He changes and our strategy should also change.  I don't anticipate this process will be remotely similar when he is 12 or 16.  We have to keep the US Marine Corp credo in mind "...Improvise...Adapt...Overcome."

We learned a ton about patience.  My advice to anyone going through any kind of procedure is to not be shy about asking everyone to slow things down.  Getting in a rush heightens anxiety and usually makes a difficult situation worse.  Our medical team was absolutely fabulous at taking their time.  We never felt rushed and that had a remarkable effect on us, as it gave us a chance to relax a little as well.

We hope our successful day is the beginning of a trend.  Gives us a lot more confidence when we face down our next procedure.

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