Conrad is the light of our lives. He is full of love, joy, and zest for life. Our little guy has brought many people to Christ through his short journey. He is such a miracle that we celebrate daily.
He has overcome so many obstacles. Conrad looks incredibly healthy, and our Rad Kidney Kid Fam only gets a brief insight into his life from social media. So I wanted to share a little of the behind-the-scenes of life with a medically complex baby.
Our lives are very scheduled, and we work hard to keep germs away from Conrad since he has a compromised immune system. We maintain a clean home, wash our hands a million times daily, and avoid venturing into large groups or settings.
We pay extra attention to Conrad’s areas to keep them free of germs or dirt—for instance, we deep clean his room daily since this is where we connect him to dialysis.
We also have to be extremely careful with visitors. A common cold is all it takes for Conrad to have an extended hospital admission. A baby on dialysis is unique compared to an adult due to their naive immune system.
Conrad receives medical supplies monthly from his dialysis company and our DME company. We have a designated room in our home to store his medical supplies.
Honestly, his medical supplies have taken over every room in our home. Our kitchen sink is full of everyday baby items, plus thousands of syringes and feeding pump supplies. His bedroom gives off the ambiance of a hospital room.
Conrad takes ten medications daily. He must take seventeen doses each day of the various medications. Some medicines we give orally, but most are given through his g-button.
Conrad is hooked to his PD cycler and feeding pump overnight for over 10 hours every night. We follow a sterile procedure to disconnect and connect him morning and night. It can be very time-consuming, but keeping him safe is necessary.
Our little guy must sit still for blood pressure, weight, and temperature twice daily. It is no small feat to keep our wiggly little 14-month-old still; thank goodness for Ms. Rachel.
Bath time is also unique in our household. Conrad’s extra hardware is not allowed to get wet. We’ve worked on perfecting bathtime.
After a bath, our little dude has to sit still while we change his dressing at his pd exit site. We follow a rigorous procedure to keep this area as clean as possible.
During the week, Conrad has speech, physical, and occupational therapy. He has sessions every day of the week. We do everything we can to help our little guy succeed.
We see A LOT of specialists. Texas Children’s Hospital is truly our second home. For perspective, Conrad had over 12 appointments in February alone, plus an unexpected overnight stay.
Our phones are constantly ringing with calls from our medical team, hospital billing departments, and insurance companies. We have racked up much medical debt and will continue to do so.
Like many medical families, we have relocated and uprooted to give Conrad a fighting chance at life. We will once again be temporarily relocating for his kidney transplant.
We come from a very supportive community and have the best family support system, but unfortunately, the help is limited due to miles and finances.
A kidney transplant is not a cure, but it gives Conrad a chance at a life free of a machine. Be on the lookout for my next blog about all things kidney transplant.
I hope today’s blog shines some light on what true heroes kidney warriors are. Please remember that social media is just a smaller picture of the larger story.
Thank you for your support and prayers. We could only do this with you.
Love,
The Rad Kidney Kid Fam