Sleep Overs After Transplant

Our daughter was diagnosed with kidney failure at 3 months of age.  Thankfully, she is now 12 years old (11 years post-transplant) and doing just great.  Our goal is for her to eventually handle all aspects of her health one day, so we have slowly transferred more and more responsibilities over to her, but we still keep a close watch to make sure she is taking her medications, drinking water, wearing sunscreen, etc.  We are trying to give her more and more independence so that she can demonstrate that she knows how to take care of herself without us always being nearby.

One example of this is our approach to sleep overs. She had her first sleep over around the age of 5 and it took place at our house where I could make sure she stopped eating at a certain time before taking her medicines, drank all of her water, etc.  For years we were happy to host her friends so that I could manage her post-transplant needs.  She was about 9 when she wanted to have her first sleep over away from home. We let her go to the house of some good friends of ours who knew all about her transplant.  I explained to the other mom that our daughter would need to stop eating at a certain time, and that I would drop by to give her medications that night and at the same time in the morning.  I also told the other mom that our daughter needed to drink a certain amount of water each day and the importance of washing her hands before eating, and after touching animals.  Everything went smoothly and we allowed those types of sleepovers with close friends for a few years. 

Several years later when our daughter was 11 we let her sleep over at a new friend's house.  We told our daughter that she would need to be very responsible for taking care of herself and she agreed. I explained to the other mom the basic things she needed to know about medicine and timing, water, hand washing, etc. I had my daughter demonstrate to me (in front of the other mom) how she would draw up her liquid medication that evening and the next morning. I clearly labeled her PM and AM medications. Finally, she was to text me when she took the medications at 7:30 pm that night and 7:30 am the next morning.  The evening dose went as planned but at 7:40 am the next day I had a panicked call from the other mom telling me that our daughter had taken her morning pills the night before.  That meant she had had double the amount of blood pressure medication that day, among other things.  When I asked our daughter why she did that she answered "I was embarrassed and didn't want to have to think about it the next morning."  

It was an important reminder that our daughter didn't want to be different.  Even though she knew which medications to take and when, it was more important to her to fit in with her friend and to just take them to get them over with.  We discussed the consequences of her actions and why it was dangerous for her to do what she had done. We didn't allow anymore sleepovers for a month until she demonstrated to us that she knew which medications to take and when.   She has since shown us that she can be responsible with her medications and has been allowed to go on more sleep overs.

I have realized that sometimes you have to give up control and allow mistakes to happen to reach to your ultimate goal.  I'm happy to say that our daughter is much more conscientious about her medications ever since that mistake.  She is 12 now and still relies heavily on us for her health care needs, but she is once step closer to knowing how to take care of her kidney for as long as is possible.

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