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As many of you know, my nephew was in the hospital for 14 days! It was so scary and awful! Here is the story of what happened(straight from his mom):
On 6.13.2018 Chance had a fever of 105 & a large swollen lymph node. I treated with Tylenol and Motrin & took to his ped the following day. After a negative strep, negative mono, and normal WBC, they were sent home to continue treating with antipyretics. On 6.15.2018 Chance’s fevers were still 104/105 and he developed a rash. Chance’s ped ordered a visit to the hospital, so we went in to CMC- Levine children’s hospital. The following days Chance’s fevers persisted, he developed a full body rash, swollen hands & feet, blisters in his mouth & further lymph swelling throughout his body. His ultrasound showed hepatamaly (enlarged liver) as well as splenomegaly (enlarged spleen). Chance’s labwork showed liver dysfunction, extreme inflammatory response, low platelets, low hemoglobin & high ferritin levels. Chance’s blood pressure was low & he received a ton of IV fluids. He became fluid overloaded. He started to require oxygen, lasix & albumin. Chance then started to hallucinate- sometimes pleasant, other times overwhelmingly scary.
In addition to his pediatric hospitalist, he had an infectious disease doctor, a cardiologist & hematology/oncology on board.
The doctors told us that they were pretty sure he had Kawasaki’s Disease, but since there isn’t a specific test for this, they came to his diagnosis by exclusion. We started treatment for Kawasaki’s: high dose aspirin and IV immunoglobin.
The next day infectious disease and hemoc doctors informed Chance’s parents that he had red flags for HLH and MAS, that they needed to do a spinal tap and a bone marrow biopsy. Due to hallucinations, they also scheduled brain scans. All of this was done under anesthesia. After all of his procedures Chance was found to be cyanotic (blue) and without a pulse. CPR was performed for 3-5 minutes and one round of epinephrine was given. Thank God he was surrounded my an amazing team at he time he coded. He was intubated & brought to pediatric ICU. The doctors told us that Chance most likely coded due to respiratory arrest. He was given propofol and his liver didn’t process it as expected due to his liver dysfunction.
On 6.20.2018 Chance was extubated and transferred to a step down floor. The results from his tests slowly rolled in and the doctors ruled out HLH & MAS. At this point the doctors told us they were sure it was Kawasaki’s disease & he was given a second round of IVIG, as well as IV steroids.
Chance’s fevers finally broke and slowly he started to improve. He started walking and didn’t need oxygen anymore. He spiked a few unexplained fevers, but after 14 days he is finally home and our hearts are so full and thankful for that!
Chance’s parents missed 2 weeks+ of work to be with him, and there are unknown pending hospital bills.Let’s all come together and show them how much we love them and help them cover these hospital bills and lost wages. Thank you for all the prayers and thoughts, We were all so worried about him and are so thankful he is back home now.
On 6.13.2018 Chance had a fever of 105 & a large swollen lymph node. I treated with Tylenol and Motrin & took to his ped the following day. After a negative strep, negative mono, and normal WBC, they were sent home to continue treating with antipyretics. On 6.15.2018 Chance’s fevers were still 104/105 and he developed a rash. Chance’s ped ordered a visit to the hospital, so we went in to CMC- Levine children’s hospital. The following days Chance’s fevers persisted, he developed a full body rash, swollen hands & feet, blisters in his mouth & further lymph swelling throughout his body. His ultrasound showed hepatamaly (enlarged liver) as well as splenomegaly (enlarged spleen). Chance’s labwork showed liver dysfunction, extreme inflammatory response, low platelets, low hemoglobin & high ferritin levels. Chance’s blood pressure was low & he received a ton of IV fluids. He became fluid overloaded. He started to require oxygen, lasix & albumin. Chance then started to hallucinate- sometimes pleasant, other times overwhelmingly scary.
In addition to his pediatric hospitalist, he had an infectious disease doctor, a cardiologist & hematology/oncology on board.
The doctors told us that they were pretty sure he had Kawasaki’s Disease, but since there isn’t a specific test for this, they came to his diagnosis by exclusion. We started treatment for Kawasaki’s: high dose aspirin and IV immunoglobin.
The next day infectious disease and hemoc doctors informed Chance’s parents that he had red flags for HLH and MAS, that they needed to do a spinal tap and a bone marrow biopsy. Due to hallucinations, they also scheduled brain scans. All of this was done under anesthesia. After all of his procedures Chance was found to be cyanotic (blue) and without a pulse. CPR was performed for 3-5 minutes and one round of epinephrine was given. Thank God he was surrounded my an amazing team at he time he coded. He was intubated & brought to pediatric ICU. The doctors told us that Chance most likely coded due to respiratory arrest. He was given propofol and his liver didn’t process it as expected due to his liver dysfunction.
On 6.20.2018 Chance was extubated and transferred to a step down floor. The results from his tests slowly rolled in and the doctors ruled out HLH & MAS. At this point the doctors told us they were sure it was Kawasaki’s disease & he was given a second round of IVIG, as well as IV steroids.
Chance’s fevers finally broke and slowly he started to improve. He started walking and didn’t need oxygen anymore. He spiked a few unexplained fevers, but after 14 days he is finally home and our hearts are so full and thankful for that!
Chance’s parents missed 2 weeks+ of work to be with him, and there are unknown pending hospital bills.Let’s all come together and show them how much we love them and help them cover these hospital bills and lost wages. Thank you for all the prayers and thoughts, We were all so worried about him and are so thankful he is back home now.
Organizer and beneficiary
Hollie Flowe
Beneficiary