On October 24, 2018 at just over 5 months old Falon Wiest got transferred from the Lethbridge Regional Hospital to the Alberta Children’s Hospital by ambulance. She had been throwing up bile, had excessive diarrhea, fevers of 40 degrees and above and a heart rate of 230 for 5 days. Lethbridge had performed all of the basic tests for viral or bacterial infection, including meningitis which all came back negative. On top of the Gastroinestinal Issues she had, she had been diagnosed with Cushing’s Syndrome, and Calgary wanted to complete a MRI on her brain. Cushing syndrome occurs due to abnormally high levels of the hormone cortisol. Some of the symptoms of this syndrome that Falon showed was weight gain, obesity, moon face, excess hair, muscle weakness and bone loss. This syndrome can be caused for two reasons; 1) A pituitary gland tumour or 2) She has had prolonged use of a steroid. Fortunately the MRI came back clear and it was determined the syndrome was a side effect of steroids that a doctor had prescribed her at birth for neonatal rhinitis.
We spent two weeks in ACH doing numerous tests as Falons diarrhea and throwing up was only getting worse, even though she strictly fed through IV nutrition. We were told she was a very sick baby and could go into shock at any moment. She had what was considered secretory diarrhea where her body was producing diarrhea for no reason. After two weeks of tests, and numerous specialists, they though they had a diagnosis but had to send away her DNA to Finland. In the meantime she had more tests, xrays, ultrasounds, a PICC line, a biopsy, colonoscopy, endioscopy, echocardiogram, EKG and the list goes on. She also had numerous blood byproduct transfusions and a blood transfusion.
6 weeks into our stay at ACH the DNA test came back negative. The tests started all over again since she was considered undiagnosed once again. Her specialists completed another scope (colonoscopy/endoscopy with biopsy’s) to decide that she may have a very rare early onset of Inflammed Bowel Disease. She has DNA tests being completed in Toronto and Finland, and specialists in Toronto and France helping to find a diagnosis for her. We were discharged on December 24, 2018 after spending a total of 65 consecutive days in the hospital. Falon is doing well at home, she has a very strict and limited diet of food and is getting 100% of her calories from IV nutrition at this time (Parenteral Nutrition). We still see specialists in Calgary every two weeks going forward at the Children’s Hospital.
Without the Alberta Children’s Hospital we don’t know where we would be today or if we would even have Falon with us. We were so fortunate to be able to sleep in the room with Falon every night and have a great team of specialists and nurses working with her around the clock. We used equipment that was purchased from donations (one was a vein finder for children with small veins - this was used when Falon was poked 17 times in one weekend to try to keep an IV in her). We also used programs such as Music Therapy which is fully funded by donations. Two mornings a week Sarah would come in with musical instruments (guitar, rain stick, shakers) and sing songs to Falon while working on her Physiotherapy at the same time. It’s amazing how much of a distraction music is for kids to work on their Physio without complaining. The two mornings a week was the highlight of our weeks, Falon and I loved it as we knew no matter how sick Falon was it was a time that brought positive energy into our room.
Please make a donation to the ACH, even $5 can make a difference. To donate to our personal page, please put in the recipients name: ‘Kimberly Ivan-Wiest’
Jeff, Falon and I will on Country 105 Radiothon live on February 6th between 10am-11am. Please tune in to listen to us share a bit of Falons story on the radio.
Falon, Kim and Jeff.