A Special Child in the Family

Coping

 

Cover of A Special Child in the Family
If you would like to read the information on this site offline, you can buy a print edition from Amazon or download a free or low price Kindle or epub ebook

Is Hospital Really Necessary?

Some hospital admissions are emergencies leaving you no time to plan beforehand or prepare your child. More commonly, though, you will have enough warning to gather your thoughts and possessions. One important, though often over-looked, consideration is "Does your child really need to go to hospital at all?"

Surgery

Obviously surgery cannot be done at home but it may be possible for your child's stay to be shorter than originally suggested. Children are often admitted at least one day, maybe more, before the operation. Often this is necessary for preliminary tests to be carried out but sometimes it is just to allow the child to settle down and to ensure he does not eat before the anaesthetic.

If you live reasonably near the hospital and are confident you can starve your child properly, it may be possible for him not to be admitted until the morning of the operation. If the idea appeals to you, talk it over with the surgeon in advance but don't be too disappointed if your suggestion is rejected.

Your child's operation may be necessary but not urgent. If he is already upset by starting school or the arrival of a new baby, you may feel he should be spared further distress for a while. Perhaps he is older and would prefer his operation at a time which does not interfere with cub camp or important exams. If you feel your child could cope better with surgery at a later date, discuss this with his doctor well in advance. Your child already has his life affected by his special needs. It is quite reasonable to try to minimise any further effects as much as possible.

If your child has a condition requiring a succession of operations, you may reach a stage where you have all coped with as much as you can for the time being. If so, ask for the next operation to be postponed for a while. Remember the doctors look primarily at your child's medical condition. It is up to you to remember his emotional well-being and to point out to the doctors anything which may help.

Medical treatment

It can be easier to avoid admissions to hospital if your child only needs medical treatment. Parents throughout the country have proved themselves capable of learning complicated medical and post-operative care including renal dialysis and intravenous drug therapy.

If your child is about to receive treatment in hospital that you think he could possibly have at home, discuss the situation with your consultant. It's worth pointing out the distress and difficulty caused to you all by a hospital admission as she may be unaware of it, especially if you always look calm and in control. If possible, talk to your doctor well in advance as she may need to discuss the idea with colleagues. It may also take time to organise the necessary equipment and training you will need.

Don't be afraid to change your mind if you decide the task is more than you can handle after all. There is nothing wrong in admitting the responsibility feels too great or the procedures too complicated. Don't be too disappointed either if the idea of home treatment proves unworkable.

Home treatment

If you do agree to carry out complicated treatments at home, it is important to have good support you can contact 24 hours a day. Find out if your GP is involved in the plan and ask whether you should contact him or the hospital if you need advice in the middle of the night. Some children's units have a nurse employed to work with children at home to prevent them being admitted unnecessarily. If there is one in your area, she may be able to offer the support you need and you may also get help from your community (or district) nurse. Make sure you have clear instructions on what might go wrong, what to do if it does, and how quickly you need to act. You need to know what is an emergency and what can wait for the next day.

Speaking from personal experience, we found giving intravenous antibiotics at home was far better for the children and for us than having them in hospital. We also understood the treatment far better than when they were in hospital as we were given more information. But it was still a big emotional strain. My hands shook when I filled the syringes and the wretched air bubbles would not move for me although they always would for someone more experienced. At first, the children were very apprehensive about being treated by us but soon agreed that it was far preferable to being admitted. It allowed them to continue with their lives with only minimal disruption and, as they grew older, they learnt to do it themselves so they weren't completely dependent on us.

Other alternatives

If treatment at home is impossible, discuss with the doctors whether your child needs to be on the ward all the time. If treatment or observations are done in the daytime, could he come home to sleep? If nothing happens during the afternoon, could he come home for a few hours or go to the shops or the park if home is too far away? If he is admitted for tests could he go home while he is awaiting the results rather than sitting around with nothing happening? The shorter the time in hospital can be, the better for the whole family.