Thursday, March 28, 2019

To Stay or Not to Stay? That is the Question.

The Pros and Cons of Staying over-night in the Hospital with your Child.

When we embarked on our medical journey a little over ten years ago, we were clueless.  Before my son was admitted to hospital for the very first time he was only a few weeks old - we had no idea what we were embarking on.

To give you an idea of how completely unprepared we were I recalled our first few moments when we arrived on the ward on our first hospital stay.  I still remember the horror both my wife and I felt when we saw the crib that our son would be placed in.  The sides with the bars were extended all the way to the top and it had the plastic isolation barrier fixed to the top so that it was a completely enclosed chamber.  To us it looked like a baby jail.  It wasn’t a great first impression.

We had two relatively short stays in hospital that lasted just a couple of days. Those stays were extremely brief and involved starting our son on heart medications. They were actually boring. We did stay overnight in the hospital during these brief stays but we certainly learned that a hospital is a very difficult place to get any kind of meaningful rest. We realized early on that we needed to trade off.  My wife did one night and I did the next. Even in these early days we were starting to think a little more strategically about how to manage a hospital stay.

Then the Big One.

When our son crashed he was only 8 weeks old, this touched off a 5 month stay in hospital.  This situation was not even remotely similar to our previous two short hospital stays. The first 48 hours were a nightmare. If memory serves me correctly, we didn’t sleep for nearly 36 hours and found ourselves airlifted from Winnipeg to Edmonton.  The phrase “We’re not in Kansas anymore” took on a whole new meaning.

Ironically, in that first night in Edmonton, neither one of us stayed in the hospital overnight.  We came from the airport and arrived at the hospital in the late evening. We had time to see that our son was OK, spent an hour or two at his bedside and then we left to our hotel. We really had no choice.  We were exhausted and desperately needed sleep and the PICU was a completely open environment. There was no obvious place to stay even if we had wanted to. Were there other accommodations in the hospital? We didn’t know and we were just too tired to ask.

The next morning was our first full day in the ICU environment. We really lucked out and had a bedside nurse who coached us through what “life in the ICU” was like. She implored us not to spend too much time in the PICU. We had no idea how long we would be in hospital and we were told it could be weeks or months. Our bedside nurse repeatedly told us that we needed to “pace ourselves.” If we spent every waking hour in the hospital we would rapidly burn out. She was absolutely correct.

Having already spent one night away from the bedside and being confronted with many of the realities of an extended stay in the hospital we made the choice not to stay overnight. For the next 5 months my wife and I never stayed at the hospital overnight. Not once. I would say that this decision played a key role in our ability to survive our hospital stay.

Thinking back on that decision now, I am left with a bit of an uneasy feeling recommending that approach to anyone else. What worked for us may not work for others. It’s important when dealing with a crisis to be able to assess your own skills. What you should be spending time on and what things you need to let go.

Why Did We Choose Not to Stay

There were two main reasons why we chose not to stay overnight. We trusted the staff and the fact our son was only a few weeks old.

We had been at the Stollery Children’s Hospital for only a few hours and even in those early moments we were already developing a significant trust with the staff in the PICU. In the PICU you have one to one nursing and even when a nurse was on break we could visibly see the watchful eyes of the nursing staff as they monitored our son. Many times we would stay in the evening just to see who our nurse would be for the night. When we became aware that our nurse was someone we knew and already trusted it became an easy decision to leave. If it was a nurse we had never met before we would stay a little longer and try to get to know the nurse a little more until we were comfortable leaving. Even when we were eventually moved to a regular ward, all of the cardiac patients were on telemetry. From the nurses desk they could tell if our son was awake - just by looking at the monitors. There were times that we arrived in the morning and our son would not be in his bed. He might have woken up during the night and one of the nurses would have picked him up and may have taken him to the area where they may be charting or doing other work so that they could keep a closer eye on him. This was very reassuring to us. It actually felt like the kind of care that you would get if you were at home.

The second reason we were comfortable leaving was that when we arrived in hospital our son was only a few weeks old. Being so tiny he slept or was heavily sedated. He was at a *developmental stage where he would not have had the same awareness of the environment that an older child would have had. If he had been older…possibly 8 or 10 we would have likely re-evaluated our approach. This is why in later years we have stayed with him during hospital stays as he is just at a different stage in his life. As children grow and develop we have to change our approach.  What worked 5 years ago doesn’t work today. As he approaches his teen years, we will likely have to consider other approaches as caring for a teen in hospital will be a much different experience.

The point I am making is that hospital stays are hard on a family. That cannot be avoided. There is no magic right or wrong. We have to figure out the best way of managing our situations based on your own specific needs and the specific challenges you are facing.

I know some parents might say, "I could never leave my child alone at night in a hospital." I get that and I understand.  However, “how are you going to survive?” is a very valid question. I have seen other families take very different approaches than we did. I know several who have traded off with other family members to stay overnight.  One night it is Mom, the next night it might be Grandma and so on. If you have a large enough care network, this is a very viable approach. There are many solutions. 

There is no perfect formula, we write this script as we go. The one thing that you can’t do is beat yourself up over a decision that you made. In this process we all make mistakes and you have to accept that. I know that I made the case for why we chose not to stay overnight but there were times we questioned whether that was the right choice. Our son went into V-Tac on one night when things were very tense. He could have easily have died while we were comfortably sleeping in our hotel room. Perhaps my take on this topic might have changed drastically if that had happened. These are the choices you are forced to make when your children are in hospital. It’s not easy.

If you are facing a challenge like this I would make a couple of suggestions. Talk to your nurses, or a child life specialist. They see these situations all the time and they can provide valuable insight. There may even be a place to stay in the hospital that is not at the bedside that is in close proximity to where your child is. This would be dependent on the facilities in your hospital. I would also encourage anyone to reach out to peer parents who have been through situations like this. They can provide a lot of practical advice about not only how to manage a hospital stay but many other life situations that parents of medically complex children face. There are people out there who want to help, perhaps the biggest barrier to cross is to admit you can't do it all on your own and to ask.

* Note: The effects of medical trauma on our son were profound and only realized years later. Although we were told and believed that he would never remember his experience in hospital - research is now showing that not to be true. Another factor to consider when leaving a child over night in hospital. I shared our experience based on what our understanding was at the time. I think we would have made the same choice but I think parents should have the best information available to make an informed choice.

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