I took the kids to a local pumpkin patch that had farm animals on Saturday, October 7. While there, the children split a cheeseburger for lunch and had ice cream before we left. That following Monday, October 9, Claire started having loose stools with similar episodes throughout the week. On Thursday, October 12, Claire woke up saying her belly hurt really bad and had diarrhea shortly after, so we kept her home from school. She got worse as the day went on and by the afternoon, it was clear that she had blood in her stool and spent about 20-30 minutes of every hour on the toilet. 

She was such a trooper and did so good drinking a lot of water all day, but she was worse the next day, so we took her into her pediatrician’s office where they tested her stool. They told us it could take up to 72 hours to get the results. Claire was drinking water and Pedialyte, but early Saturday morning we were very concerned about her and called her pediatrician since she was on call. She suggested we take her to the ER. We first went to SSM Health’s ER where they treated her for severe dehydration since she was still having bloody diarrhea for about 30 minutes every hour. They did an ultrasound on her abdomen and then thought she had a ruptured appendix since her intestines were so inflamed. She was transferred to MU for possible surgery.  

Shortly after getting to her room at MU, we got a call from her pediatrician saying she tested positive for Shiga Toxin producing E. Coli and wanted the staff to be aware due to the seriousness of that bacteria for young children. Surgery was canceled and then the plan was to keep her for the weekend to treat her dehydration and monitor her. We talked about hopefully being discharged on Monday, but Claire just kept getting worse and her blood levels indicated that her kidneys were failing. She had moved into the next more advanced stage, Hemolytic Uremic Syndrome (HUS).  

For Jacob, he threw up a few times on Saturday, October 14 (the day we took Claire to the ER), but began to feel better the next few days until Tuesday, October 17. On Tuesday, his child care provider called stating that he was laying around saying his stomach hurt and then eventually vomited. MU suggested we bring him to the ER so he could be checked out. Once he got there, he declined quicker than Claire. They admitted him and confirmed he also tested positive for Shiga Toxin producing E. Coli. He had extreme projectile vomiting and became dehydrated very quickly. Jacob also progressed into the next more advanced stage, Hemolytic Uremic Syndrome (HUS). HUS is tracked by DHSS. In December of 2023, there were 11 cases statewide and Claire and Jacob accounted for 2 of them.

The next several days were constant blood draws to check the kids’ red blood cells, white blood cells, and kidney function. Both kids had several blood transfusions. Both kids’ kidney function kept declining each day until it was determined Claire would need to undergo surgery to have a catheter placed in her stomach to begin receiving dialysis on Wednesday or Thursday. The next day Claire seemed a little better and had more energy than she had in a week, but Jacob was still declining. It was determined on Saturday that Jacob needed surgery right away to place a catheter in his stomach for dialysis as well. 

That Saturday is when things took a turn for Claire. We noticed that she wasn’t acting herself, but the nurse said she was in pain and uncomfortable due to the dialysis. We continued questioning if she was okay and the nurse and other staff said that dialysis can wear the body down and she just needed rest. Later in the day, Jacob went to surgery and had his catheter placed. That evening right after Jacob came back from surgery, his nurse came in and said “he can have 1 dose of morphine for pain, but can’t have more than 1 dose since morphine is processed through the kidneys, so it isn’t safe to give more than 1 dose in children with kidney failure.” At that point, we were very concerned about Claire since we weren’t told that before and she had been given 2 doses of morphine for pain after her surgery. Sadly and ironically based on timing, about 5 minutes later, the Tiger Team was called where all the code doctors and nurses rush in to assess a patient in critical condition. They said her monitors showed that she had stopped breathing at times for the past 20 or 30 minutes. I stayed in the room after they rushed in and saw Claire’s body convulsing and she threw up into the air and was foaming out of her mouth. They had to use a suction for her mouth. She was rushed for an emergency CT to determine if there was bleeding in her brain. She wasn’t moving or awake at all.

Once it was confirmed that she had no bleeding in her brain, then she was immediately given a dose of Narcan and her entire body jolted and she woke up. The Narcan removed the morphine that was in her body. Her last morphine dose was given that morning around 8 am and was not processed due to her current kidney failure. This event with the Tiger Team was around 8 or 9 pm that evening. She seemed much better after the Narcan, but the next morning she couldn’t move her left arm or leg. An MRI was done and showed that she had a stroke in the right side of her brain. 

We are unsure if the morphine caused the stroke or at least played a role in the stroke because that is the only difference between Claire and Jacob’s cases. They followed the exact same patterns with the illness, but Claire was given 2 doses of morphine after surgery and Jacob was not. Claire’s stroke is indicated as being caused by a blood clot. HUS does cause blood clotting and morphine overdose can also lead to stroke, so maybe the morphine played a role as well or maybe the stroke was just from HUS and Claire being given multiple doses of morphine was a separate issue. 

On Sunday morning, October 22, we had both kids transferred to St. Louis Children’s Hospital since they have pediatric neurologists and an expert on HUS. The team at STL thinks that Claire had a stroke overnight or early morning before the morphine/tiger team/emergency CT event that evening, so MU doctors and nurses missed her stroke symptoms for an entire day. 

At STL, both kids continued with multiple blood transfusions and continuous dialysis. They were both in a lot of pain all the time. Claire had become unresponsive – she wasn’t in a coma and could open her eyes, but she could barely move her head or wiggle her toes. The only movement she had was in response to pain. A few more MRIs showed that she had “an evolution of a stroke” and had inflammation in the watershed areas on both sides of her brain, which explained Claire’s loss of motor skills, not being able to move or talk.

It was an extremely scary and chaotic time when both children were in the PICU and battling HUS in separate rooms. Claire was placed on an NG feeding tube and oxygen. Both kids had multiple peripherally inserted central catheter (PICC) lines in their veins for medicine and transfusions. Eventually, they were moved from the PICU to a regular hospital floor for monitoring. Jacob was discharged November 11, so he was in the hospital for almost 4 weeks. Claire had to stay in the hospital, her kidney function was recovering, but now had to start working through the neurological effects on her brain. 

Claire had occupational, physical, speech, and augmentative communication therapy at St. Louis Children’s for about a month and then it was suggested that she transfer to Ranken Jordan (RJ) for more intensive inpatient rehabilitation. We left STL Children’s on December 4 to go to RJ. While at RJ, she also had surgery at St. Louis Children’s to have a g button placed in her stomach for primary feedings instead of having an NG tube in her nose and throat. She was at RJ until February 21. After discharge from RJ, Claire had spent 4 months/130 consecutive days in hospitals. During this time, both kids missed Halloween, Claire’s 5th birthday party was canceled, and Thanksgiving was spent in St. Louis Children’s Hospital. Claire also spent Christmas, New Years, and Valentine’s Day at RJ. She made very slow and minimal progress while receiving inpatient rehab at RJ.

After discharge from RJ, she could move her left toes, mover her right leg, and could swallow thickened liquids and soft foods, but has no functional movement and still cannot talk.  We’ve been told by doctors that her brain injury will likely take years to recover from and can’t say where she’ll end up, but hopefully more than 50% recovery chance.  They said 100% recovery is not possible.