Choosing Pain or Taking a Risk

Richard survived the unintended Fentanyl overdose and was released on Friday - our 16^th anniversary and Robert’s birthday.  It certainly was a day to celebrate!

What a difference a year can make.

 

Dinner in Rome - 2012

A year ago, we were in Rome and then on a cruise to France, Spain and Italy again. It was the trip of a lifetime (after a year, I can forget about the pain Richard was in after the flights, the lost luggage and all the extra activity).

No, this year my husband was lying in ICU because his doctor inadvertently filled his abdomen (instead of his subcutaneous intrathecal pain pump) with 40 ml of Fentanyl.

Yes, 40 ml.

Richard not only has the pain pump but has the “big boy.” I talked to the doctor in charge of the clinic (the one who has his name on the door) and he explained what happened called a “pocket fill.”  It’s rare, he said, and has happened twice since he started using the pumps.

After doing research and friends sending me information, this is apparently a known risk for these devices and there is a recall on them. The company doesn’t recommend removing them but developed extra precautions to reduce the risk of the pocket fills.

Note to company: they didn’t work (although I have no idea if the doctor even followed these “extra precautions”).

Last week Richard was going through extreme withdrawals and was miserable. We knew what would come next – the pain.  Since the pump refill didn’t actually happen, his pump doesn’t have any medication in it. 

This thing, as mad as I am about this ordeal right now, has changed Richard’s life. Before the pump, he had to control his pain with extreme amounts of strong oral narcotics.

He couldn’t drive; he had wild mood swings; he was grumpy and when he wasn’t grumpy, he was sleeping.

Good times.

A decade later, he still talks about not ever wanting to put the kids or me through that again. To him, he is secondary in the equation. He would love to be out of pain but, more than that, he doesn’t want to be that person again with his family.

I tell him that it is okay, that period of our life is behind us. The kids and I all understand what was happening. It was difficult but it’s over.

Now the pain is back. Extreme pain. Debilitating pain that stops him in his tracks and has my husband in tears.

The pump is not functioning and he is feeling the full effects of life without it. He cannot get comfortable; he cannot sleep yet he can barely get out of bed.  He cannot do much of anything except try to relieve his pain with a heating pad, heat wraps, a TENS unit, some Advil and a few of his Hydrocodone.

He has lay down in a tub of warm water; showered several times so the warm water can ease the pain.

Richard is usually boisterous and loud with an inner monologue that has no understanding of the concept of “inner.”

Now he is quiet.

He speaks softly and not often.

This is not my husband.

Unfortunately, we have not yet been able to find a different doctor who works on these pumps or who might have a different pain solution for him. Richard has to choose between living with this pain while we search for a new doctor or go back to the same pain clinic that put him in the ICU.

The lead doctor was not the one who overdosed Richard so Richard has agreed to return to the clinic but only having the lead doctor work on his pump (“routine” refills and everything). 

We had suspected the pump was malfunctioning before all of this and have been pushing for months to get that figured out. Richard was experiencing achy joints and all sorts of ailments (many symptoms of withdrawal) so the doctor suggests an MRI dye study to view the pump and see if it is working.

That is scheduled for Wednesday at 6:30 a.m. Because we have Robert, Richard’s mom will take Richard to the appointment and I will finish getting Robert ready for Day Program and then meet them at the clinic.

Richard has to be put under anesthesia for the dye study so he needs someone with him all day. I’ve taken the day off from work but I suspect his mom won’t leave his side until he wakes up.

This makes me nervous but I know Richard wants to be out of pain. Let’s see what is going on with the pump and then discuss other pain control options with this doctor. If Richard can get some sort of pain control then we can continue our search for another pain management doctor.

This is a risk and anyone who knows me, knows I am very risk-adverse. However, I know Richard would not make this choice if he was able to find some other way to get out of pain. The dye study itself won’t get him out of pain but it is the first step in that direction.

I’m sure everyone is shaking their heads and thinking we are crazy but this pain has to stop.

The quiet is starting to freak me out.

Robert’s Sister Goes to the Movies: Happy Feet

Before Richard was in the hospital but after my stint as a caregiving cheerleader to Robert with those pesky socks, we had a movie weekend at home.

Happy Feet (2006) Poster

“Identity Thief” was on the agenda for Saturday night and “Happy Feet” was our Sunday afternoon entertainment.

For someone who loves movies as much as I do I am woefully behind in my viewing of popular movies.  I mean, is there anyone besides me who hasn’t seen “Happy Feet?”

“Happy Feet” is a movie about Emperor Penguins who are pretty much required to sing if they want to find their soul mate. One young penguin, Mumble, can’t sing but, boy, can he dance!  No one appreciates this skill, though, so he is deemed an outcast and kicked out of his homeland.

Poor guy! He even falls in love with another young penguin but he i sure she won’t love him because he can’t sing. He does enjoy dancing so much he just can’t stop and teaches others his nifty moves wherever he goes. 

While on his adventure once he has been exiled, he becomes a hero with his dancing abilities.

There is a strong environmental message in the movie which isn’t a bad thing but it is a bit too heavy-handed for me.  Of course, this was released in 2006 not too many months after the largest Alaskan oil spill in history.

Maybe heavy-handed isn’t too much after all.

Overall, the movie was enjoyable with an uplifting message and lots of feel-good song and dance routines. I won’t tell you if Mumble gets the girl but you probably already know since I am no doubt the last person to have watched this movie!

Robert enjoyed this PG rated animated film as well even though he did take a short nap during it (which is pretty normal for him).  It lasts 108 minutes and would be a good, fun movie for any age, caree or their caregiver.  In fact, it might be a fun movie for grandma and grandpa to watch with their grandchildren. 

Since “Happy Feet” has been out for several years, it is going to be easy to find and cheap to purchase or rent. Amazon has a 24-hour rental for $1.99!

So pop some popcorn, download the movie and clear some floor space – because this movie is going to make your feet happy and ready to move!

We’ll give “Happy Feet” three out of five scoops of Rocky Road Ice Cream.

 

Richard is in the ICU (What?! Who?!)

Richard is in the ICU.  Not Robert.  Richard.  

I'm as shocked as everyone.

Say Cheese, Dad!

As many of you know, Richard has severe back pain and it is managed with an intrathecal pain pump filled with Fentanyl. This is refilled every 60 days or so. He had a pump refill appointment early this morning and he walked out the door like any other day.  Well, except that our puppy, Taz, escaped and we had to chase him back in the house.  Twice.

Other than that, everything was perfectly normal. Robert was picked up for Day Program and I left for work. 

Mid-morning I texted Richard asking how his appointment went.  I didn't think anything of it when he didn't reply as I thought he was busy. I ended up making an appointment for myself because I've been experiencing some dizziness and thought I could take a longer lunch and have a quick appointment and then back to work. 

That was the plan, anyway.

In the middle of the appointment, Richard called and sounded awful. He was groggy and he said he was in the hospital. What?? Were you in a car accident? What happened??  He answered my questions with non-answers and just kept saying he was in the hospital and told me which one. 

As I was rushing out of the doctor appointment, explaining to a nurse that I couldn't wait for the doctor and had to leave, I realized: Robert is going to be dropped off by his van in 10 minutes.  

I then realized my phone was about to die. 

Oh crap. 

My phone charger in my car doesn't work so I just had to hope I had enough charge to call the transport company and tell them I was on my way home to get Robert.  When I called, they answered, "This is Medstar. Please hold." Click. 

Are you kidding me? 

Thankfully, they got back on the phone before the phone died and I explained I might be a few minutes late in being home.

I zip home, still without any information about Richard, and the van hasn’t arrived yet.  I plug in my phone, let the dogs out (pleasantly surprised not to find any accidents after such a long time in the house alone!).

Taz didn’t even eat anyone’s bed which was an added bonus.

I called the hospital and told them all I knew was my husband had been admitted and I knew nothing else.

“What’s his name?” Oh, okay, I know that.

“Richard Kreis – he’s in the ICU. Let me transfer you.”

He’s in the ICU?? Why is he in the ICU?

“Let me transfer you.”  Okay, okay, okay.

I talked with the ICU nurse who didn’t tell me anything other than the doctor would call me. Yeah, I’ve heard that one before.

“No, really, he’ll call you as soon as we hang up.”

The doctor actually did call right away and as we talked, Robert’s van pulled up. I went out to get him in the house and ushered him to the bathroom all the while talking to the doctor and taking notes.

Apparently, at Richard’s appointment, something went wrong with the pump refill and the medication went into his body instead of the pump.

Richard had overdosed on Fentanyl at 7:30 this morning and NO ONE CALLED ME!  The doctor said they were monitoring him and he would have to stay overnight but that he should be better by the next day. 

I couldn’t even believe how this happened but the doctor had given me all the info he had.

I quickly packed Robert’s meds and a snack and hurried him up in the bathroom, helping him change his briefs into fresh ones. Robert wanted to brush his teeth which is always followed by shaving so I explained Richard was in the hospital and we had to get going to see him immediately. 

“I understand.”  Robert didn’t put up a fuss or anything. He didn’t even ask to shave, bless his heart.

On the way to the hospital, I called Richard’s pain clinic and spoke with the doctor Richard saw this morning. He was extremely apologetic about what happened and also apologized for not notifying me.

It went only slightly better than: “We almost killed your husband and on top of that, we didn’t call you but we are very, very sorry.” 

Gee, thanks.

He had no good explanation for what happened. 

My husband is lying in the ICU with an overdose of drugs in his system and no medication in his pump so I know once he recovers, he is going to be in a world of hurt.

I still don’t understand how this could have happened. I don’t understand how I was not notified by the clinic, the ER or the ICU!  Once I make sure Richard is recovering as he should, these will be questions I will ask and answers I will get.

I do not want this to happen to another family!

When I left the hospital tonight, Richard was still groggy and sleepy but on oxygen, being monitored and given fluids as well as an antidote that is supposed to counter-act the overdose.

I’ll update more when I know more.

Oh, and the picture is payback for all the times Richard took candid pictures of his mom while lying in a hospital bed! Richard is passed out and the girls are enjoying some fun time with dad.

Because, no matter what, Richard would want us all laughing. 

At the Movies with Robert’s Sister: Now You See Me

I love three-day weekends. For one, it means a four-day work week! Not that I dislike working but it is nice to take a break from work.

We live by a schedule whether it’s a three-day weekend, through the week or a regular weekend.  Medications, lunch, laundry, shower, shaving, more medications, more laundry and more shaving. Throw in the dogs’ schedule: eating, playtime, sleeping, playtime, eating, playtime and sleeping.

Robert at the Movies

It may seem like chaos to the outside observer but we know the schedule and know what works for us. I schedule Robert’s haircuts after lunch and before mid-afternoon medication time. Our dinners out are scheduled early so Robert has enough time to enjoy a dinner out yet get ready for bed before his 9:00 p.m. final dose of medication for the day.  It is very, very rare that Robert is in bed after 9:00 p.m. A solid routine and lots of sleep means fewer seizures (usually).

So there were all kinds of reasons NOT to see a movie on Sunday, Day Two of a three-day weekend.  I was getting stir-crazy being in the house all weekend and thought Robert and hubby would have fun going out too.  But what to do?

Being spontaneous in our household means thinking of something to do at noon and then putting it into action several hours later.

Driving to the beach was out. It is too long of a drive for us with Richard’s back pain. We have to stop and let him stretch several times during a drive and a two and a half hour trip to the ocean turns into five.  (And that’s one way.) Plus, we haven’t taken Robert to the beach yet and I don’t know how that would work (I mean, seriously, how easy is it to go the bathroom at the beach?). It is not something to figure out in an afternoon.

What about a movie? I checked what was playing and the only movie that sounded like something we would all enjoy was “Now You See Me.” It was showing at one theater that I haven’t been to before and started at 4:45 p.m.

Ugh! This was a terrible time. This was fifteen minutes before Robert’s medication time not to mention his regular dinner time; smack dab in the middle of the dogs’ dinner and playtime and, since the movie was longer than I would have liked, we would get home later than I would prefer in order to allow Robert time to be in bed by 9:00.

Plus, this movie was showing at a theater I had not been to and I didn’t know the bathroom lay-out. The bathroom situation is one I always consider no matter where we go.  An emergency clean-up could strike at any time – do they have family-style bathrooms or will Richard have to take Robert in to the bathroom and do the clean-up duties? It is a serious consideration. 

We knew the walk to the theater from the parking lot would be too much for Robert so we have to bring the wheelchair. Will there be space for the wheelchair and Richard and I to sit together? I have been to theaters where there is one spot for the wheelchair and only one chair next to that space. Other seats are in the row in front of those two spots – whoever designed those spots obviously didn’t anticipate more than one person going to the movies with the person in the wheelchair!

Even though there were plenty of reasons not to go to this movie, we went anyway. Robert got ready to go – went to the bathroom and shaved and Richard loaded the wheelchair and fed the dogs. I prepped Robert’s medications so he could take them before the movie started.

We got to the theater in plenty of time and were surprised to find this was a cheap movie theater! We paid $4 per ticket! What?!  Since we were in the middle of dinner time, I told Robert we would get him a hot dog along with popcorn and Sprite. Heck, let's splurge! I just saved a bunch on the tickets! 

“Can I have candy too, please?”

Um, no.  This is plenty; plus, I’m going broke at the concession stand here. (Tickets may be cheap but food is not!)

I scoped out the bathrooms and they weren’t family-style but they were at least close to the theater we were entering. It would be an easy maneuver to take Robert in if needed.

Richard wheeled Robert into the theater while Robert held what seemed like a gallon-size cup of Sprite (and that was the “small”) and Richard held the gallon-size tub of popcorn (at least that was called a large).

I waited for the hot dog (not sure what they were doing with it but don’t really want to know) and caught up with them as they entered the theater.  The wheelchair area was at the end of a row in the back of the theater. Woohoo! Richard and I can sit together and – bonus – Richard has a place to stand when he needs to stretch his aching back.  We set Robert up with his food and drink (we could have used one more cup holder but that wasn’t a huge deal).

I gave Robert his meds before the previews started and he enjoyed some popcorn and his hot dog. He ate more popcorn during the movie and would have eaten more if I had let him. Instead, he made sure to eat every last popcorn crumb in the tray I had given him.

The movie is not going to win any awards but it was definitely entertaining. It was less predictable than I expected which was a pleasant surprise and the actors were all likable (although I couldn’t get Mark Zuckerberg out of my head since Jesse Eisenberg was in this movie and he starred in “The Social Network”).

The movie had magic tricks which Robert enjoys as well as a cat and mouse game involving Morgan Freeman and Mark Ruffalo (two actors I adore!) and lots of action. The movie is rated PG-13 so there weren’t a lot of disturbing violent scenes although there was someone having a very bad day which involved getting tangled up in a garbage disposal.  There wasn’t anything graphic but just the thought of what could happen! Yikes!

I peeked over at Robert throughout the show and only once or twice was he dosing off (probably because he was in a junk-food coma). 

Once the movie ended and we were on our way out to the car, we asked Robert what he thought of the movie. “I loved it” was his reply.

How was the hot dog? “Excellent. I loved it.”

Did you like the popcorn? “Yes, I loved it.”

And the Sprite? “It was excellent. I loved it.”

There were lots of reasons we could have stayed home instead of venturing out but these were the best reasons to have gone.  We even got home in enough time for Robert to finish his bedtime routine with a few minutes to spare before 9:00 p.m.!

I would give this movie three (out of five) scoops of Rocky Road Ice Cream but will have to add a half scoop since Robert had such a great time. 

3 ½ scoops for Now You See Me!