Nov 24, 2019 Latest post:
Dec 20, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
It all started at the end of October, Charlie complained of his teeth hurting. On Halloween, he was up all night with a high fever and crying in pain. That next morning I made an emergency dental appointment for him. Our dentist did an exam and took some simple x-rays but all he could find was some very mild swelling of his gums. His explanation was there was likely a piece of food that had become caught which was causing the pain and inflammation so he sent us home on a low dose of oral antibiotics.
The next morning Charlie woke up with a horribly swollen right cheek and continued to complain of pain. He was still running a fever and was lethargic so I decided to bring him in to WestHealth Emergency Room. Luckily, one of the doctors I work with at ANW was able to see him quickly and he received exceptional care. She was concerned that he had an infection in his parotid gland in the cheek. Blood work suggested that his body was trying to fight off something more serious than a little inflammation. She immediately started IV antibiotics and arranged for us to be transferred to Minneapolis Children’s Hospital for further investigation and to keep a close eye on the swelling of his face.
Even under the circumstances and not feeling well, Charlie was pretty excited to take his first ambulance ride! We were admitted to Minneapolis Children’s that evening 11/2.
Charlie was very brave as he was poked and prodded for additional blood work. He had to have a new IV put in as his first one came out during transport. Late that night, he underwent an ultrasound of his face to check his parotid glands for infection.
The next morning, Charlie’s facial swelling had improved as well as his pain and fever and his ultrasound came back completely normal. The pediatric team felt confident that the antibiotic was working as his labs showed improvement as well. They recommended 24 hours more of IV antibiotics and we could be discharged home the next day.
That night at the hospital, I couldn’t sleep. Something nagged at me that there was more to the story and I was uncomfortable with the fact that we still didn’t have an explanation as to what had landed us in the hospital in the first place. I expressed my concerns to the pediatric team that next morning and they agreed to do a CT to make sure we weren’t missing something. A CT for a 3-year-old requires deep sedation and being kept NPO (nothing by mouth) in order to get good pictures and avoid vomiting which could be aspirated into the lungs.
Charlie was sedated with propofol for the CT, but did not tolerate it well as he started snoring and was not protecting his airway so required some support until it wore off and he was able to wake up. To our dismay, the CT came back showing some abnormalities. The pediatric team consulted specialists including ENT (ear, nose and throat), OMF (oral maxillary facial) and ID (infectious disease). The plan would be to proceed with an MRI with contrast to take a better look.
The MRI was scheduled for the next afternoon, which required Charlie to be NPO at midnight again. It was a very long day waiting for our MRI that day, meanwhile being hooked up to an IV pole and not being able to eat or drink. But Charlie is a trooper! They used the same medication to sedate him, this time with airway support as he was under sedation for a longer period of time. They were also able to place a better IV and get some blood work while he was sleeping.
That next morning we got bad news. Charlie was diagnosed with a severe bone infection of his mandible (jaw) called osteomyelitis. While osteomyelitis itself is not altogether rare, it usually affects children in their long bones where there are growth plates, not in the jaw. The doctors were (and still are) puzzled as to what could’ve caused this infection without some sort of dental infection. The recommended treatment for this serious bone infection is 4-6 weeks of IV antibiotics to avoid spreading or permanent bone damage. The good news: Charlie’s body was responding well to the antibiotic, Unasyn, which he had been receiving around the clock since his admission to the hospital. The bad news: Unasyn happened to be on a nation-wide shortage and it couldn’t be guaranteed there would be enough for his treatment plan. More bad news: It would need to be given thru an IV every 6 hours and had to be kept refrigerated. The rest of that day consisted of a whole team of doctors, nurses and other staff members from Pediatric Home Services (PHS) putting their heads together to make a plan to get Charlie better. Then we found out they would be able to secure enough of the antibiotic and save it for Charlie’s course of treatment…hooray! Together, we came up with a genius plan: Charlie would have a PICC (peripheral intravenous central catheter) line placed the next day so he could get the medication at home. The pharmacy would mix the bags of medication into two bags per day with two doses per bag and then program a mini IV pump worn in a backpack to deliver his bolus every 6 hours. The backpack would have room for an ice pack to ensure the medication be kept cold while continuously infusing. It’s at this point I am thankful for my knowledge and experience in the medical field which is essentially the only reason we would be able to discharge home.
Charlie was sedated for the third time to place the PICC line the next day. He tolerated the procedure but had a fair amount of bleeding so they opted to keep us one more night in the hospital to make sure it improved and to allow time to get all the supplies we needed for the home IV infusions.
After a full week in the hospital, on 11/9, we were discharged home with our brave little man!! Now with his PICC line and antibiotics infusing 24 hours a day, the doctors recommended he stay home from little school (daycare). Luckily, Dan was able to take FMLA to stay home with him and the staff at little school agreed to save our spot for when he gets better. The timing hasn’t worked out great in the fact that I accepted a job as the Patient Care Supervisor in the Emergency Department at Abbott literally one week before all this evolved. On the bright side, I have the most amazing work family who have been understanding and supportive.
Within the first week of being home, Charlie’s little body started to protest the high doses of IV antibiotics. His labs showed he was moving in the wrong direction with a high white count, increased inflammatory markers and his liver enzymes showed he wasn’t tolerating the medication. Our ID doctor saw us and recommended cutting the dose of antibiotics down and rechecking blood work in three days. But things started to go awry. Charlie’s little sister was exposed to Hand Foot Mouth Disease at daycare and developed a fever the next day. She had a rather severe case that covered her entire body and inside of her mouth with blisters. She turned the corner within three days and continued to recover. Little Charlie was not so lucky. Within 4 days of his sister, he started to get blisters on his mouth and hands. By Thursday Charlie’s body was covered in blisters including his scrotum and penis. He could barely walk or sleep due to the pain and was not interested in eating. We brought him to our clinic and they immediately sent us to Children’s ER for further evaluation. They assured us it was a very bad case of Hand Foot Mouth Disease which was made worse with his immunocompromise and discharged us home that afternoon with a prescription for some antifungal cream.
The next two days were some of the hardest I’ve ever experienced as a parent. Charlie’s already terrible rash continued to get worse. He was in severe pain despite Tylenol and Ibuprofen around the clock. He didn’t even want to be touched because the painful blisters were everywhere. That last night at home, I cried along with him as he whimpered in pain. There is no worse feeling in the world than to watch your child suffer and being completely helpless. Charlie’s IV pump kept malfunctioning and beeping throughout the early morning hours of the night. His IV dose was somehow wrong as the bag was suddenly empty even though he had another 3 hours left of the infusion. And the pump was reading error codes and alarming. Finally, in tears, I called Dan at work at 3:30 in the morning and we decided we would need to return to Children’s Hospital for help, which is where we are now.
I want to thank you all for your love and support. We feel fortunate to have such loving family and friends who have been following us along this journey. Papa and Grandma Keller have been the biggest lifesavers, helping with Charlie’s IV tubing changes while I am at work, watching the kids, and bringing groceries and prepared meals.
I will continue to update Charlie’s page as we know more information. Our biggest need right now is prayers. God has dealt us a difficult hand, but we are trying to stay positive and focus on getting Charlie better.