Tips:
by Kim R
- Rest assured that your child’s kidney doctor (nephrologist) and dialysis nurse will provide you with extensive training before you begin dialysis at home. If at all possible, have two adults available for the training.
- Find comfort in the fact that a dialysis nurse and/or nephrologist will be available to you 24/7, should any problems arise.
- You will need to clear a large, clean storage space for dialysis equipment, which will be shipped to your home on a regular basis (sometimes once a month).
- You will need to stock up on a large quantity of paper towels and soap dispensers, because you will need them to wash and dry your hands every time you connect and disconnect your child from dialysis.
- Keep your face masks in the bathroom where you wash your hands and in your child’s bedroom. You don’t want to forget to put the mask on until after you wash your hands because you will have to do another full scrub after you put the mask on your face
- Keep an egg timer in the bathroom to ensure you wash your hands and forearms for the full time required.
- Consider investing in a microwave cart or some other small cart with wheels that will stand at crib/bed level for the dialysis machine and solution. Your child will be on dialysis for quite a few hours and the tubing that connects your child to the machine is very short. A rolling cart will allow you to move your child to other areas of your home if need be.
- You will need to put a gate in your child’s doorway to ensure that no siblings or pets enter the room when you are connecting and disconnecting your child from dialysis. Only you and your child should be in the room when you connect and disconnect from the dialysis machine.
- Even when your child is off the dialysis machine, keep tubing up and out of the way so that your children and pets do not mess with it.
- Consider everything you will need in your child’s room so you can tend to or entertain your child while on dialysis, such as a rocking chair, books, toys, television, or DVD player. During the hours your child is awake you will need to keep him occupied so he doesn’t try to pull on or pull against the tubing.
- Consider training a trusted friend or family member as a back up on dialysis, in part as a precaution in the event something happens to you and you become unavailable and in part so that you and your spouse can have some respite from dialysis or a date night. Make regular practice runs.
- Consider making a video recording of the process of connecting and disconnecting your child from dialysis. Ensure the recording is marked and kept near the machine in the event that someone has to unexpectedly take over dialysis for you.
- Keep a notebook by the dialysis machine to record the required numbers and ensure there is a list of important phone numbers at the machine for the dialysis nurse, the nephrologist on call (in the event the dialysis nurse does not answer her page), and the hospital. You should take this notebook with you for all appointments with the nephrologist.
- Make sure there are multiple clamps located near the dialysis machine in the event the tubing or dialysis catheter break. You need to be able to quickly clamp off your child to reduce the risk of infection and clamp off the tubing to the machine. Be aware that you will have to take your child to the emergency room in the event this happens.
- Moisturize your hands frequently. They will crack and bleed from all the hand washing that is required for dialysis.
- Dialysis will seriously undermine your ability to get a full night of sleep. This will affect your stress level, your coping skills and the relationship you have with your spouse. Establish a plan in advance with your spouse, so you both know who has to get up when the alarm on the dialysis machine goes off in the middle of the night (as it frequently does). Will you alternate nights where you are responsible for the alarms or will you take turns with each alarm each night?
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