Emma,
So sorry to hear your little boy is suffering from kidney disease at such a young age. Many donors have gone through testing only to find out that their kidney function would not sustain them if they were left with only one kidney and therefore were not approved to donate. When this happens to a parent for a child I can only imagine the disappointment. As a parent of 4 daughters, my initial reaction would be take my kidney and I'll go on dialysis instead. Of course, this is not possible.
You say one kidney is 1 cm larger. Was this measured by ultrasound, CT or MRT? Ultrasound is not always exact ( I am an ultrasound technologist) and a 1 cm difference is usually not of concern. Your GFR is 95. Was that done by 24 hour urine or was it done using a more invasive test which is more sensitive? You may want to ask the transplant coordinator to explain each test done, how accurate they are and if there are other more sensitive tests which may be more invasive and more expensive but can give a more accurate results. You mentioned your husband's kidney function is also less than expected. I hope he is under the care of a nephrologist to help him maintain as much kidney function as possible by taking appropriate medications (this may include blood pressure medication or other protective agents depending on the reason for the decline), eating a healthy diet and avoiding medications like ibuprofen, Aleve, naproxen or other non steroidal anti inflammatories (NSAIDs). It would be even more challenging for your family to have to have two people needing kidneys.
It is amazing that your son has been approved for transplant given that he is only 12 months old. Did he have to reach a certain weight before being approved? Is he on the list for a deceased donation? From my understanding, pediatric patients get more points on the waiting list which makes the wait a little less. How is he doing on PD? Are you managing it well? Some families whose infants/children need a kidney opt for a deceased donation, since the pediatric patients don't have as long of a wait as an adult, and then use the living donor later when they are older when a second transplant is needed. But of course one never knows if the living donor will still be eligible when the need arises. So it is a hard decision. Does the hospital have a support group for parents with children on dialysis or waiting for transplant? It might be helpful for you to speak with other parents and of course with a social worker or psychologist just to help you through this.
And lastly, you may also want to let others know of your son's need for a living donation. Perhaps a friend, family member or someone from your community/religious institution would want to donate but is not aware of the need or the possibility that anyone can be a donor, related or not. There is information on this site about how to go about making your need known in a respectful way.
Wishing you all the best for your family. Keep us posted.
Sherri