COTA for Theo

Our Story

Theodore “Theo” Renley Potts was born on August 19, 2020 via emergency cesarean due to being breech and having no amniotic fluid around him. Upon birth Theo stopped breathing due to a collapsed lung and having free air in his chest. Along with his lungs being underdeveloped, his stomach was five weeks behind. He was intubated and placed on a ventilator immediately following his birth. We later found out that the lack of fluid in the womb was due to an underlying, isolated, and rare kidney disease called renal hypoplasia. Renal hypoplasia essentially means “small kidney’s.” In Theo’s case, his kidneys are half the size they should be and only function at about 5-10%. The first five days of Theodore’s life consisted of having a chest tube placed to help his collapsed lung. Being placed on three different blood pressure medications, as well as two continuous sedations and a third one as needed; TPN for nutrition and hydrocortisone for steroids/blood pressure. He had daily labs and chest x rays to monitor his condition. He was also moved from a ventilator to an oscillator to not only breathe for him but also continue the pressure in his lungs. A few days later his lung recollapsed due to the chest tube slipping backwards and tube down his throat entering the biggest branch of the lung; requiring a new tube placement. Despite all the complications, by day five, Theo was stable enough to be transferred two hours away to Cardinal Glennon’s NICU. By the time he arrived at CG Theo was only on one sedation, TPN, and hydrocortisone. CG decided to put him on another sedation for his chest tube; fentanyl. The next day Theo was in surgery to get his PD catheter placed so that it could heal for a minimum of fourteen days before use as long as his labs held steady, and they did, for the most part. For the next few weeks the sedations were weaned and there were some withdrawal side effects. TPN was also weaned as feedings were increased until eventually he was on full bottle feedings. Theo also got weaned from the ventilator to a CPAP machine, then to room air. He has been off all ventilations since. In the seventeen days before use, Theo’s PD catheter site leaked many times prompting daily dressing changes and running of cultures. Thankfully, after a repeat test, all cultures were good. The day Theo was set to start dialysis there were complications with fibrin building up in the tube so the doctors had to clear it out. The next day there were complications with the tubes that hook up to the bag but eventually dialysis successfully started. Staring at 30mls, dialysis is operated manually. Theo has to work his way up to 120mls before he can get on the cycler machine to be able to come home. The first day of dialysis all drainage was cloudy which is a sign of infection. The doctors thought it best to collect the drainage and run more labs/cultures. Nothing ever grew but his white blood cell count was high so Theo did a round of two antibitotics just in case. We were also informed that the kidneys create red blood cells and help the thyroid perform normally. With his condition, neither of these things are happening. Currently Theo receives epogen injections three times a week to help his red blood cell production. His thyroid is monitored via labs and he is given extra sodium and phosphate in his specialized formula and/or breastmilk. He also has to have his potassium intake monitored as a high potassium level can affect the heart rhythm. The doctors told us to expect to go home with a feeding tube, as most kidney babies tend to stop eating. Theo has defied all odds so far and continues to show everyone his fighting spirit. Currently he is at 80mls of dialysate, eating anywhere from 70-100mls, and all his labs are coming back in the right range for his size and condition. Theo finally reached 7lbs but has a long ways to go before he is the right weight for transplant; 25lbs being the goal.

Thank you for taking the time to read his story so far, and thank you for visiting his page. Look for updates as we continue on this journey, and thank you for praying, donating to COTA, and/or giving us a moment of your time. I hope Theo can be an example of God’s grace to anyone who may be struggling themselves. No matter the situation, no matter the outcome, we will thank Him and praise Him.

“Be strong and courageous. Do not be afraid or terrified because of them, for the
LORD your God goes with you; he will never leave you or forsake you.”

-Deuteronomy 31:6-