My daughter Morgan’s (Mo) nightmare goes back to October 2006. We weren’t sure what was going on; we just knew that she was one very sick 4 year old.
After her 3rd visit to the ER and her oxygen levels had fallen to the 40’s, the ER decided to Care Flight her to a children’s hospital in Fort Worth. By the time we arrived the hospital had a consultation team waiting for us, the staff had already put Mo in an induced coma to let the medicine do its job. The Doctors had low hopes of her surviving and had us call the whole family.
Mo was diagnosed with Epiglottitis, which is strep in the oesophagus. When they intubated her for the flight to Fort Worth the tube in her throat had burst all the puss pockets and the infection attacked her whole body. 2 months later and Mo was out of the ICU, where upon eating we realized her throat wasn’t working, and so a g-button was inserted.
1 year later Mo had an (undiagnosed at that time) event happen which ended with CPR and another month stay in hospital.
Moving forward; Morgan is 2 weeks shy of 16 years and the flu has hit our household. Sunday – Mo came home with a severe headache and back ache. Since her 2006 event, she had very high blood pressure, so I didn’t think anything of it. But when I checked her temp it was 104. Morgan being Morgan ate 3 tacos and let me shower before we went to ER, they did a chest X-ray, blood work and took a urine sample. Diagnosed as a virus, we were told to let it run its course and…… go home! We followed up with our PCP ( Primary Care Physician) the next day and she was tested for flu and it came back positive. On the Wednesday we were at the hospital for an annual appointment and to get a clearance for Mo to fly to New York with her drama class. At this visit her doctor cleared her from being her patient and didn’t want to see her again unless it was news about New York! Thursday she was good, except the headache, which never left. Morgan wanted to go to school on Friday because her new school was playing our old hometown school in basketball.
I tried to ring her a few times and there was no answer and then, well, I found her at home unresponsive but breathing around 11am. She never regained consciousness again until months later!!!! At first they didn’t know but they suspected Acute Necrotizing Encephalitis of Childhood.
They took her in for an MRI with and without contrast; this took about 3 hours to do. After waiting for 5 and a half hours I started asking questions and was told they had to stop the testing because she was having seizures. They would try to finish the next day, which they did. The Doctors still suspected ANE but were not sure.
The next 9 days were a blur but we did find out the diagnosis in blood work. It showed a genetic mutation RANbp2, which means Mo is susceptible to ANE recurrences. This now changed the 2006 diagnosis and diagnosed the 2007 event. Scientifically she shouldn’t be here but God said she should!
We arrived in hospital January 20th and we go home on Monday 5th June. They gave her a 2% chance of making it but if she did, Mo would be dependent, from the chin down, on something or someone for the rest of her life. Today she eats, talks, reads and showers herself. She still has the tracheotomy but only wears the vent when she is asleep.