Don't Tell The Children
Wednesday 15th June, 2016
Over the next few days things started to settle into a pattern. ITU visiting became normality for us, and Marc remained on the same level of support. One of the most difficult things to deal with at the beginning was the children. Not their behaviour. I think I have previously said how amazing they were. Somehow they became complete angels, and I don't recall having to tell them off about anything in the first few weeks of Marc's hospital stay. Genuinely.
It was the fact that they couldn't see their dad. Now I didn't want them to see him like that. But it was a choice between seeing him in a state that would upset and frighten them, or not seeing him at all. Intensive Care generally does not allow children in, a fact which I was quite glad of. ITU is upsetting enough for an adult with a relative in there, let alone a child who has no concept of what ITU is all about. Later on, as we discussed Marc's recovery and he was receiving far less support, therefore had fewer tubes coming out of him or machines around him, we started to think about when the children might see him.
ITU will actually allow children in where necessary and in appropriate situations. We never discussed what might constitute an 'appropriate' situation, but I suppose if a relative was particularly ill and wanted to see children before potentially passing away, that would be one reason. Another is the fact that prolonged illness has resulted in someone being separated from their children for a long time. This was our case. But in those early days, I couldn't have allowed them to see him.
Not their daddy
He was a frightening sight. I honestly don't think they would have recognised him as their daddy. Pale and looking so small, his 6 foot frame seemed dwarfed as he lay there immobile in the bed day after day. An enormous tube leading from a noisy ventilator machine to his mouth, which it completely obscured. A plastic object looking a little like an oversized snorkelling tube-end connecting the tube to his windpipe. Sores around his mouth from the pressure put upon it by the ventilation tube. Thinner tubes coming out of either side of his neck and running across to various drip stands. The cumbersome tubular blanket covering his entire body.
Numerous large alien machines surrounding him, which emitted frightening bleeps and dings at various intervals. The folder at the bottom of the bed, used to file paperwork recording his hourly BP, temperature and heart rate results, plus only slightly less regular blood test results, which was getting thicker by the day. The clinical looking frame behind his bed which contained the numerous drugs and solutions which were keeping him alive.
No. I did not want them terrified. I did not want them remembering Daddy like this.
Keeping life as normal as possible
But he was always an ever-present dad. His job did not take him away for work-related trips, like some people's do. He had barely spent more than two nights away from them in the past. I knew that not having him there would be strange for them. And I didn't know what to tell them about where he was. All I was certain of was the fact that I didn't want to alarm them, and I wanted to keep their lives as normal as possible throughout the ordeal. I felt that this was the best way to protect them from what was happening.
Marc and I as parents believe very much in telling our children the truth. In talking to them in as 'adult' a way that is possible for their age. So I didn't want to lie to them. Instead, I told them what I could without frightening them, and answered their questions as best I could. They were told that Daddy had become quite seriously ill, but that he was in the best place possible for the doctors to make him better. That he was in a special ward in the hospital, not like the one where we had visited him previously, but where children were not allowed. So that, for now, they could not actually see him, but that I would give him a kiss from them each day when I visited, and they could ask me as many questions as they wanted about him.
Amazingly, they accepted this with very few questions. I think perhaps they knew that I couldn't cope with many questions at that point in time, or maybe that they didn't want to know, as they feared it might be an upsetting truth. I'm no child psychologist. I only know that they were beautifully behaved and accepted what I told them as their new reality. And I set about making sure we had everything in place so that I could keep their lives running as normally as possible.
My parents and Linda were a Godsend, and cared for them almost daily at the beginning, dropping off and collecting from school and nursery, running them about to various clubs and classes, making sure they were fed. My sister and Marc's brother Matt helped out hugely too, as did my friend Clare, often looking after Amy for the afternoon (alongside her own children) so that I could visit Marc for an hour before having to pick Daniel up from school.
This was also the point where I started to have to ask friends for help. To be honest, I didn't have to ask. There were plenty of people lining up to offer support as soon as they found out what was happening. Daniel had friends' parents who were willing to take him to and from football training and matches, parents of Amy's friends at school offered to take her to ballet. For several weeks they both had people ferrying them about and generally seemed quite happy about it.
I hugely appreciated the support. Every time I thanked these people, they said that it was nothing, such a little thing for them to be doing while our lives were in chaos. I suppose if the situation were reversed I would have been happy to do the same, but I couldn't have managed without that support in the beginning, and it wasn't just a one-off. It went on for weeks to come.
A slow recovery
But back to Marc. He was taken off the dialysis for a short period on Monday 30th June, but his levels dipped quite dramatically. It was decided that his kidneys still needed the support for the time being, and the dialysis machine was switched back on. He was being fed via TPN (total parenteral nutrition) at the beginning. This type of food sustains patients when they can't get their nutrients from any other source. The food is administered through a tube into a vein rather than into the stomach, and I got used to the familiar sight of the solution, which comes in a huge red plastic bag, hanging on the frame with all his drugs behind the bed.
The staff were trying to get Marc's stomach to start working, by slowly dripping a different feeding solution into his tummy via a tube up his nose. They could control the amount being sent through the tube at any time, and would periodically draw the liquid back up and measure it, to see how much of it was being absorbed. At the beginning, not much was being absorbed at all, and I remember one of my daily questions for the nurse on duty being how much of the solution Marc was currently managing to take in. It was clear that his stomach, like his kidneys, would take time to recover.
Looking back, I can see so easily how each of his organs, which had begun to shut down during his sepsis, needed time to recover and would not start working again properly for some time. Back then in the middle of it all, I found it very frustrating and upsetting, and could not really process the agonising sluggishness of his rehabilitation. Marc's body could only cope with one thing at once, and it was going to take a very long time for every part of him to recover.
I do marvel at the body's ability to repair itself though. Considering what Marc's had been through, the fact that all his organs were able to recover was nothing short of a miracle.