Hospital Experiences

Many children with special needs spend a lot of time in and out of hospitals dealing with a variety of medical issues.  Over the years this becomes an integral part of family life, overshadowing everything.   This is one of the most stressful of challenges, one which the average parent never has to face.

 In our case, we were faced with dealing with Oliver having a congenital heart condition called Tetralogy of Fallot.  Oliver had to have his first open heart surgery at the age of 18 months at Great Ormond Street Hospital. 

Oliver’s first heart operation

Waiting for the day of the operation was like living with a sword hanging over my head.  It was almost a relief when the day had finally come, and nothing had occurred to postpone the operation. Oliver had not succumbed to an infection, which at that time was a frequent occurrence, nor had the hospital cancelled the appointment.  Oliver himself, was quite unaware until he was given a sedative, which did not calm him down but had the opposite effect. He became red faced and hyperactive.  It ended up  taking six people to hold him down in order to give him an anaesthetic. The operation took five hours.  I sat in a hot bath and prayed, between coffees and cigarettes and tons of anxiety. 

After endless waiting a special nurse came to take me to Oliver’s bed.   I had been shown around intensive care on two previous occasions, so that I would be prepared for Oliver in the midst of tubes, ventilator and other life saving equipment.  Nothing could have prepared me for the moment when I finally saw my boy’s tiny face and body taken over by technology.  ‘‘Take him and run’’ my maternal instinct screamed, trying to pound me into action.  But I knew that would kill him immediately, so I kept breathing and burst into tears - I who never ever cry in public - the nurse took no notice.  What could I do but follow him to Oliver’s bed.  Then to my surprise he started talking to Oliver who seemed to be completely unconscious.  He told him that I was there and that I would sit and talk to him for a while.  So I took another deep breath and got on with my job of being Oliver’s mother:

“Hi darling I am so glad to see you.  You did it! You got yourself through this”……

To this day I feel so much respect and gratitude for the skill and humaneness of this nurse, who showed me the way to handle something so difficult and traumatic

For the next few hours my friend Kate and I sat and talked to Oliver.  We held his tiny hand and tried to understand all the machines, asking the nurse endless questions.  Inside, I was just praying and praying :

‘’Please God let him come through this alive.’’

He was developing a fever, apparently a not uncommon reaction after having been cooled down for the heart and lung by-pass machine.  It sure was intense in the intensive care unit.  By two a.m.  I was sent to the parents’ quarters, to get some rest so that I could manage the next few days.  More praying and dozing off into exhausted sleep to re-awaken fearfully.  By 5 am I had to pluck up all my courage to go back to his bedside.

What would the news be?  Just for one second Oliver recognised me and gave me a big smile from under the ventilator.  I felt so moved.  Later that morning the nurses had placed Oliver with all his tubes on my lap.  Contact with the mother for a speedy recovery.  I felt in the right place.

10 days later and all had gone well.  We were told we could go home the next day.  I could not believe my luck.  But that very evening, which was supposed to be our last in the hospital, Oliver developed a high fever and was diagnosed with septicaemia.  Not good news so shortly after surgery.  I went up on the roof of the hospital crying and screaming to the night sky and at God: ‘’I can’t take anymore, I can’t take anymore.’’ I had so held it together, I was so frightened he would die.

They took some spinal fluid from his spine, another scary test, to make sure he did not have meningitis, which thankfully he did not.  The next few days were filled with high doses of penicillin, which made him vomit endlessly.  I sat for hours holding Oliver close to my chest, merged with him in his battle for life.  The nights I spent on a chair next to his bed.  Kate made sure I survived, by bringing me food, sending me out for fresh air and making me laugh, despite it all.  Two weeks passed, they struggled to keep Oliver’s veins open for the penicillin to go in - they struggled even more to find new ones.

When he got over the septicaemia his arm started to shake involuntary.  It was the weekend and only a junior doctor was on call.  He diagnosed epilepsy.  He prepared me and the nurses for the probability that Oliver was going to have a grand mal fit any time soon.  Oliver was given Tegretol, which is a drug for epilepsy.  Within two hours of taken it, he was totally out of it, woozy, unclear, drugged. 

On Monday morning they did an EEG and MRI scan.  Oliver could not have cared less; he had disappeared behind a fog.  I thought that if he really had epilepsy and had to continue on these drugs, there was no life left for us.  I felt stripped of everything.  Finally the consultant for neurology came.  ‘’His EEG is unusual, I don’t know what it is but it is definitely not epilepsy.  You can take him off the Tegretol immediately.  ‘’ If I had not been so tired I could have hugged and kissed this doctor for his good news, it was such a relief.

Five weeks had passed.  Oliver was very emaciated, but now his worst problem was terrible constipation.

I had become institutionalised.  I did not want to go anywhere but stay in the hospital, the only safe place in the world, though we did not get any sleep there.  Some child crying, another emergency, something was always happening. 

One night Oliver was crying and crying.  Kate and I took it in turns walking up and down the corridor with him and a few other parents in similar situations.  It took five hours to get him to sleep.  The nurses told us we could use the parent’s room to sleep in, so that Oliver would not be woken up again by another child.  It had a pull out sofa in it.  The three of us had just very carefully let ourselves down onto the bed, when the whole thing collapsed and Oliver woke up again.  It was funny really, but our sense of humour had somewhat deserted us.

Eventually Kate found a flat nearby and persuaded me and the hospital that we should try staying there, being only 5 minutes away.  The flat was beautiful, big and spacious.  It had hardly any furniture in it as the owners were trying to permanently let it.  After the hospital life it seemed strange, lonely and quiet at first, then we started to relax - Kate had been right! 

A week later Oliver got the all clear from the hospital.  I felt more confident again and took him back to Wales.  As Kate had to go back to work and I was still worried about being on my own with my boy, specially at night, I asked my parents, if they could come and look after us.  They had felt so powerless, hearing about our dramas on the phone, that they were delighted to be able to help and came immediately.

It was spring, the first warm sun rays, I was lying on the grass with Oliver on my tummy, so warm and beautiful and alive.  I did not care anymore about his special needs.  All that mattered was that he was still with me, we had survived.

‘’You are alive, you are alive’’ I held him up in the air and pulled faces at him.  He smiled.  My attitude had changed, I felt so grateful for each moment of pure simple life, the pressure of wanting a normal child had no hold of me anymore, and although it did come back eventually, never to the same degree as before.