Uncertainty

I’m used to uncertainty. Never knowing when Robert will have a seizure or how long they will last. Is he sick and will he end up in the hospital? Epilepsy is full of uncertainty but I eventually felt some level of comfort when I recognized Robert’s triggers (too much excitement, caffeine, getting sick) and knew that his clusters happened every 2 – 3 weeks. I took his vitals twice a day to watch for an increased temperature or pulse rate. An increased pulse rate usually indicated a seizure cluster was coming or he was getting sick.

When Robert lived with us, there was still plenty of uncertainty but I could at least help him avoid the triggers and I could look at the calendar and know that he was “due” for a cluster of seizures. I could (usually) tell if something was working on him and if he was getting sick.

Still. There was a lot of uncertainty.

And stress.

Robert is now living his best life in a wonderful facility and I have comfort they see when he is sick and can start antibiotics when needed in order to keep him out of the hospital. Unfortunately, his lungs have gotten worse over time so an aspiration event or a bout with the flu, Covid or RSV will almost certainly land him in the hospital.

There is still uncertainty how he will handle another hit to his lungs and it is still stressful but I at least know he has medical professionals watching over him and sending him to the hospital when needed. I am grateful for that.

Now there is a new uncertainty.

When Richard went into cardiac arrest in November it was a complete shock. It wasn’t on our radar at all. He came home from getting coffee and gas one Sunday morning and told me he had a little pain in his chest and some jaw pain. I had read that jaw pain can be indicative of a heart attack but he wasn’t in extreme pain, clutching his chest like in an episode of Sanford & Sons – “I’m coming Elizabeth!”. (The millennials and Gen Z’s will need to look up that reference.)

We drove to the hospital and we thought it might be indigestion. Richard even suggested going to CVS to get antacids. I told him let’s just go to the hospital – the consequences of not going are going to be much worse than if we did go and just waste a day at the ER.

When he collapsed as we walked to the ER, it was a shock. There was no uncertainty except my brain not fully realizing what had just happened. Richard was on the ground completely passed out and seemed to even have a seizure because his body convulsed a couple of times. Thankfully, Jo (the nurse who saved Richard) was arriving to work and jumped into action. She saw the convulsions and thought it was a seizure but his lips started to turn blue so she started CPR.

In that moment, I felt great uncertainty. Jo asked the security guard to feel for a pulse. He didn’t know how so I tried but just fumbled around on Richard’s wrist. I must have been in shock but remember thinking he can’t die because we want to go on more cruises! (The brain works in funny ways during stress.)

Two emergency response teams came from the hospital and put him on a gurney. I don’t even remember someone on the gurney with him giving him CPR. I only learned that happened later. I was right there so must have blocked that out. They worked on him for what seemed like forever in the ER.

At one point, one of the team noted he had been without a pulse for 35 minutes. Our daughter was there soon after all this happened and it only occurred to me much later that Richard was out for so long that in that time I had called the kids, Rachel and her husband put the baby in the car and drove to the hospital and she was escorted to the back to be with me.

That whole time Richard was without a pulse.

I was in the room because I told the doctor assigned to be with me that I had to be there with him if he passed away. At one point, I just blurted out “please don’t call it.” (I clearly watch too many medical and crime dramas.)

They continued CPR, they eventually were able to use the paddles all while no less than 50 people were packed in this ER trauma room, all doing their specific assigned tasks.

The uncertainty hung in the room.

Finally, they got a pulse. The lead doctor used a clot busting drug that is normally used in rural hospitals on people to buy them time to get to a cath lab. This was the first time they used it in this situation and it worked. It did what it was supposed to do and they were able to get a pulse.

The relief was felt by all of us.

There was still the uncertainty though. He was still out so we didn’t know what damage had been done or what he would be like when he was no longer sedated. He was sedated for four days so the uncertainty dragged on.

Thankfully, he had two stents inserted and over the next several days showed signs of improvement. He was released 10 days after the drive to the hospital where we joked about him going to the ER for indigestion.

Now, you would never know what he went through just by looking at him.                                                                                                       

But there is still uncertainty. He wore a life vest (a portable defibrillator) for three months which would alarm if the leads were not connected properly. Waking up to an alarm such as that wasn’t good for any of our hearts!

He still has chest pain but is it from all the broken ribs or is it a problem with his heart? He recently had both chest pain and jaw pain so we went to the ER (again, the consequences are worse if you don’t go than if you do!) and he was admitted for a few days. The tests came back showing no new heart attack but no good explanation for the pain.

So we live with the uncertainty.

It’s still early in this new health journey so I am sure we will be able to manage these issues much like we learned to manage Robert’s health uncertainties.

In the meantime, we are certain in our quest for good health for both of us. We walk most every day, we are eating healthy (notwithstanding the Cinnabon I had this morning) and are grateful to have more time with each other and our family. And, hopefully, a cruise and a trip to Disneyland is in our future!