Small Update

Just a quick check-in!Claire will be having surgery tomorrow (Monday). The exact time is unknown.The surgery is to place a hemodialysis catheter into her neck/chest area since PD failed. This is a somewhat more risky surgery as they do not make these catheters for children.Until then, Claire is being sedated and will have to be … Continue reading Small Update


What to do After Diagnosis

There are many things that we were scratching our heads about when things started to what we then described as "fall apart." One of the main questions we asked was, "What do we do now?"To help answer these questions for newbies, we have made a checklist of what your next months look like. Click¬†here¬†for a … Continue reading What to do After Diagnosis

For Parents of Kids Newly Diagnosed with ESRD

Ever since Claire was diagnosed with End Stage Renal Disease (ESRD) it has been a dream for us to help parents who are faced with the same issues we have faced over these past 12 months. There are many things that we could do to assist families with newly diagnosed children. What we have chosen … Continue reading For Parents of Kids Newly Diagnosed with ESRD


Late to the party

Well, things have definitely been happening in the Hughes family.Claire has been extubated and re-intubated. After the second round of hemodialysis, Claire began to have troubles stabilizing her heart rate. It would drop low (50s) or shoot high (180s). That is when she was re-intubated and given an echo to check her heart. It was … Continue reading Late to the party


Back to the Hospital #3

Well, that about sums it up. Claire is again in the hospital. Poor baby has had a lot of trouble the past few days with dialysis. Her peritoneal space is either absorbing the dialysis fluid thus leading her to retain a great amount of fluid, or is blocking the fluid from draining properly ending with … Continue reading Back to the Hospital #3