Raincharm’s Weblog

1st – Happy Anniversary Carl, the big 33.

Followed by parting is such sweet sorrow. Sweet because it is to witness the creation of another July anniversary, and sorrow because we won’t be together for our son’s wedding.

The full picture

A huge shout out to Jane for making it possible for me to attend, and learning the IV infusion ropes in one easy lesson, taking on lab tests and xray visits and keeping Carl well. And of course, the ball of antibiotics had a recalcitrant cap. Thank goodness I had done 2 successful infusions so I knew it was not normal. For those that know me well, I am a control freak, so this is either a test or lesson in letting go.

The last few days, since release have been filled with medical appointments, visits from friends that allowed some errands to be completed and continuing to learn the ropes of caregiving, and receiving care. It’s an interesting dance, trying to do more without going too far.

Rainbow super hero cape infused with tylenol

So, the 3rd sister, who is actually first, whipped up this awesome cape in response to a text string talking about Carl’s bionics. I had sort of forgotten that conversation until Jane reminded me, but the forgetting was all on me, too many things to remember lately. I don’t know how she found the time and the perfect material.

I have tried to download it all to Jane, and left her the book of everything. (If Ashlan reads this she knows what I mean.) And the book is more than half full. When this started, I thought it was way too big, but it was bound and on hand, easy to grab. The marbleized cover of this essay book says, “Reynard’s driving log”.

So off we go, solo, with the occasional tear in the eye. Happy anniversary to my sister and brother in law, several cousins, countless others, and especially Carl.

On the day of Carl’s big heart surgery I spent time in the waiting lobby. I noticed the information desk person noted me as, “blue jacket”. I was wearing a light blue Lands End fleece jacket that zips and has two zipper pockets.

This jacket has become a primary piece of my hospital attire. It’s enough to keep me comfortable in the rooms and not too warm outside, where it has been in the 60s. And I can put a cell phone in each pocket (mine and Carl’s). I had been wearing this piece now and again, but not every day.

I wonder if it has been long enough to become a habit?

We have a reasonably good chance of leaving today. They are working on discharge paperwork as I type. And giving the last/first dose of the newest antibiotic. Last in the hospital, and first of the variety we will learn how to administer at home.

Many notes to take today before we walk/ride out of here.

Oh, and Happy 60 to the guy. First present of the day

And, while we are missing Carl’s birthday party at Safeco Field, we should be able to make an appearance at this evening’s film festival.

Heard a shout out to Carl on the TV broadcast as a nurse delivered him a celebratory cake pop (only 22 carbs).

IV nurse kicked me out of the room to insert the mid-line that we will be using for the next month. One more step closer.

And finally ready to go home.

The discharge directions are daunting. We have 2 appointments, a blood draw and prescriptions to fill tomorrow, and then another appointment the next day and a further one to schedule. It’s exhausting.

I felt organized, but not so much now. I think it’s partly because I am leaving town in 4 days and won’t be able to control the situation in my own freaky way.

But on to happy moments.

Arriving home. So helping Carl get his walker up the stairs.

And then off to a truncated (for us) film festival with friends who helped us celebrate, everything.

And now we get to sleep in our own bedroom. First time for Carl in 2 weeks! But we are here, and that’s what’s important.

GOOD:

Knee was exposed, under shrink wrap. Looking good, still bigger than normal, but better than before.

Before

After

Climbed a flight of stairs. This means we don’t need to set up an alternative sleeping quarters at home.

Saw several friends at the hospital.

The highest temperature last night was 99.4 degrees.

The Mariners won!

NOT AS GOOD:

They are still trying to determine the best antibiotics to send us home with.

Our friends had to go to the hospital to see Carl.

He will not be able to attend his Suite 60th birthday party at the Mariners game. Still holding out hope for the film festival tomorrow evening.

Goals.

Getting out of the hospital is all about meeting enough marks that you pass the test and graduate back to the real world. And there are several that must be met. And they always seem to shift, not in unison.

Several days ago they seemed simple. Learn to be careful moving. Move more and more. Have movements. (come on, everybody knows you must do this to get out) Meet your INR number of >2. And we were moving smoothly forward more or less on all but the INR.

This was in large out of our control as the docs watched to see whether the extra hardware (pacemaker) was required. And it was, and it was added. Back on the road to meeting goals, again.

We were so close to the exit, but then the moving decreased with the size of the knee increase. So, onward to the knee surgery and start over on most of the goals. With both upper and lower issues to deal with, for a time the goals seemed even further away. And stability of temperature as an indication of infection control became primary. Slow progress, but not always forward.

Yesterday morning the requirements seemed far away. By the evening they felt within reach.

So we are hoping again to be released in time for Carl’s party, film festival and seeing the many friends that are on their way as we speak. All eyes are on Sunday noon.

This brings us to all of my non-medical goals. Beds are made, ticket distribution is underway, dishes are clean, and house modifications for 7 visitors are sort of in place.

O Can we leave? Sung to the start of the Canadian national anthem. July 1st! Canada, Nelson Cruz and Carl’s birthday! Let’s Get Ready to Party!

We hope.

3rd time’s a CHarms!?!

This late afternoon was surgery #3.

At hospital #2. (Same care provider, but out of the cardiac specialty location to the version with orthopedics.)

The goal today was to flush suspected infections out of Carl’s knee. Arthroscopic with 2 incisions.

And a few more days in a larger facility. At least the parking lot is a lot bigger.

So, we were all getting ready to head home. Heart’s looking good, just trying for a good number. And then the knee happened.

Went from walking carefully at will to can’t get out of bed. So today they took some fluid out to send for tests. No smoking gun yet, but the knee is a bit smaller.

Ashlan left without getting to help him home, but was immensely helpful in helping me (pick raspberries) and generally keeping us company.

Today was good for me. I had some time to take care of a little work, do some digital and telephone errands and continue to hang out.

We joke that Carl is one of the healthier patients on whatever floor he is located, but we’re still here.

All of the bionics have been added, OT and PT are happy with his abilities (although my abilities to exert my will on his physical positioning are sorely lacking).

We are waiting for the blood thinner level to get to an acceptable point. Monday or possibly Tuesday is now the expectation for escape. I’ll believe it when they hand me the discharge paperwork.

In the meantime Ashlan is keeping us company, along with a few friends.

Tonight I am going to take advantage of Ashlan to install a new showerhead with a handheld wand. (After a trip to Dicks Drive In.)

Exciting times!

At least we get some world cup games each morning. And the Mariners.

Really day 3, if you count the big day as 1.

There is an ongoing debate on whether day 2 or 3 is harder. I think from Carl’s perspective day 2 wins. It was not all bad but he had some really painful bouts and couldn’t get fully comfortable. Day 3 includes more activities that are tiring. But in the morning they removed the chest tubes which got rid of the most intense pain source, or so it seems.

Still in ICU for another day, but after addition of more bionics tomorrow morning we are hoping for a move to the regular floor.

Wow, I just looked at the picture and for a moment he reminded me of my uncle Don. Which is funny (to me) because several years ago there were pictures of Carl that reminded me of my cousin Mac, Don’s son. And of course Carl is only related by marriage.

My schedule has fallen into a bit of a pattern. Wake up, water the raspberries and whatever else there is time for, make some food to take, jump in the car to get to the hospital before shift change (when you get the scoop), hang out while trying to stay out of the way, watch some soccer and maybe baseball, leave late for home, eat something and fall asleep until the alarm goes off again. Repeat. I will undoubtedly get this down just as it all changes. Progress!

And it’s a scorcher today in the real world. Luckily for us, by the time we head home the temperature is supposed to be much more Seattle like.🌦

Alarm was set for 3:45 am. Woke up just before it went off. Unlike many early risings for plane trips, we both fell asleep pretty easily last night, and are reasonably well rested.

Similar to airports, what seems to be a time when few should be awake – but everyone else is also trying to make that early flight, there was a line at the reception desk. 5 am, but we weren’t stressed about getting through security.

The rest of this entry may have more information than you want. Feel free to skip. This is a way for me to keep track as it happens.

Into the pre-procedure room area. Same place we went for the heart catheterization test a few days ago. I will admit to having lost track of the specific order and days of all of the recent appointments.

In this first stop he has been measured, questioned several times, poked once (so far), and just about completely shaved. The last is the biggest visual change. And we met with at least half a dozen folks that are in charge of his care.

It took the anesthesiologist saying twice it was time for hugs and kisses for me to realize I was being shown the door, or curtain. This was the first time this morning that things got emotional. 7:15 am. What is the last thing you should say, before everything is different?

The focus is really 3 months down the road, when abilities should start to return. The next three months of recovery are still the grand unknown.

We did finally settle on a bell so I can be at Carl’s beck and call. It is the type you might see in a hotel lobby when the clerk has stepped away from the desk. Our other choice was a cowbell, but the sound didn’t resonate and I didn’t want to be listening to Christopher Walken and Will Farrell references ad nauseam.

In the meantime I am cooling my heels in the reception waiting area. Doing some work. Focus can be distracting. As can the sounds of construction, drills and saws… they did warn that hospitals are not quiet places, but hammering was unexpected.

9:04 first update – stable, bypass underway (1 vessel)

I finally understand why I didn’t get where the Starbucks was that everyone uses as a landmark for giving directions in the hospital. It is closed and under construction behind white temporary walls. I could see the ubiquitous sign, but no cafe. That’s the source of all of the construction noise.

9:48 second update – stable, on the heart/lung machine, bypass still underway.

In addition to the construction noise there had been a crying toddler, and I accept that as normal and expected. Now a barking dog. I don’t think this is a service dog training aspect, so am slightly annoyed.

Took a bit of a wander. Around the block. Figuring out the lay of the land, beyond the parking structure to hospital skybridge. And a bit more work. Wander for some more food.

12:30 third update – off of the heart/lung machine with no complications. Watching for some time before closing.

Work and wait.

1:05 fourth update with the surgeon. Looking good. Closing underway.

1:20 packing him up. Up to the ICU.

In the family waiting room, another family getting some not so good news. Should I leave? I don’t know where I would go. So I focus on my stuff. First time I wish I had a second with me.

2:20 visit in his room, for a few minutes. Lots of tubes, he looks kind of small in the bed. Sleeping. And I have been kicked out for another hour.

Now to communicate with those who care.

3:35 Back to ICU. Still sleeping until ~3:50 when he “woke up”. It’s a little hard to tell the difference, except that he responds to commands.

During this interlude I took a moment to check out the array of things coming and going from Carl. My count was 2 in the mouth; 2 in the neck, splitting to 7 outputs and 2 inputs; 2 in the right arm; chest tube or 2 plus the aforementioned wires; and for the left arm a blood pressure cuff and O2 sensor. Plus a few more I probably can’t discern.

4:50 Major move forward. Breathing tube and stomach tube out. And he speaks, sort of. Complaints that are appropriate.

And so recovery begins. His sense of humor appears to be intact. When a worker delivered his bag of clothes from the pre-op area Carl forcefully (for this moment) said, “okay, let’s go home.” I told him we could, as soon as he can tie his shoes.

9:00 pm -sat up on the side of the bed, stood and got into a chair. Assisted fully of course.

And it’s now the next morning. Tired enough that I didn’t hit post. Not rereading either.