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Child in hospital

I think that this must be one of the most difficult and emotional things that a parent could ever face. The secret I found was to make a game of it and to be honest with the child.

My youngest son was hospitalised for the first time when he was about 3 he had croup. So when they put Oxygen mask on him, I told him he looked like a fighter pilot, so it was not a scary thing for him and it became a game. As parent you need to speak positively about the experience so that you keep your child’s expectations up

He had to have a bone marrow transplant and died from complication of the procedure in June 2008. He was 11 at the time. (He had adrenoleukodystrophy.) We spent about 3 months in hospital and for more than 90% of the time someone was with him.  There were many nights where the person with him had to “nurse” him through the night. At the end he could not talk or move due to the adrenoleukodystrophy. But it was important for him and us to keep a game going. He and I would count the doctors that we saw. In the year proceeding his death we saw over 34 doctors, so he and I would count the doctors and find out if they where professors or just doctors. We also enjoyed jokes and he would quite happily tell everybody that he did not want to be in hospital. But right to the very end he fought the effects of the disease.

To tell a child the truth sometimes is very difficult, but by so doing you build trust. This was made easier by the fact that I am a Christian but it is still tough. How do you tell a 10yr old child he has a disease and it is going to paralyse, blind him, make him a mute, deaf and that he will not be able to eat and eventually he will die. I did this and it made him and I very close and because we as a family were honest we had a chance to say our goodbyes and prepare both him and ourselves for the inevitable. (I tell people one of the greatest privileges’ I have ever had was to prepare my own son to die. I would give it up in heart beat to have him back.)

The other thing like prolonged hospital stay is the cost. He was in isolation for about 3 months. It cost me about R400K, this is over and above what medical aid paid which was literally millions.

So anyone who has gone through this sort of experience takes years to recover, emotionally, spiritually and financially.

I hope this helps

Mark
 
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