Ella’s sixth year
We almost lost her again. It started off great…Ella learning to shake her shoulders and starting Kindergarten at a new school. Then she started getting sick. We couldn’t seem to make it to a full week PPCD-K. We were having seizures left and right, and just couldn’t seem to get control, but as Jonathan turned 1-year-old…I realized that his first year was not normal at all. Here is where it all went crazy (oh, and let me remind you I was training for my first 1/2 marathon at the same time…and never missed training)
9/4/11 We are in Iowa visiting family and Ella starts running a fever
9/6/11 Joe took Ella to the hospital in Des Moines for a cough and came home with a UTI diagnosis (head home and have a memorable stop in Pryor, OK where Ella has a BLOW OUT diaper because we had to give her an enema in the back of the car, bless)
Hit DFW and head STRAIGHT to Medical City…she got horribly worse on the 12 hour drive. (also a naked 1 yo Jonathan and over tired and very irritable 2 yo William)
9/7/11 UTI and possible strep…wait on chest X-ray
9/8/11 Back in ER with Jonathan running a 105 fever and vomiting
9/9/11 CT of Ella’s neck because it’s swelling on the outside…infected lymph node that is abscessed…stay in hospital for IV antibiotics
9/12/11 Released from the hospital on oral meds
BIGGEST SEIZURE EVER…Diastat (sedative) at home…not stopping, versed (sedative) in ambulance…not stopping, then we get to the ER and they have to intubate her to give her more meds (Ativan) because as they try to stop the seizure she could stop breathing…so this all happens in what feels like minutes and yet years. (seizure lasted almost 2 hours start to finish)
9/14/11 Surgery to drain infected lymph node, sedated, still on a vent and a drain from the surgery site
9/15/11 breathing tube out and a blood transfusion
9/16/11 Neck drain out, PICC line in (a direct line to her heart for IV level meds, but at home)
9/18/11 Lymph node infection was diagnosed as MRSA (staph)
9/19/11 After 15 straight days of being in a hospital either in Des Moines or Dallas, with Ella or Jonathan…we are ALL HOME
9/27/11 PICC line out…life back to “normal”
So, we survived. I think Ella still has the scar, I’m going to check in the morning, but I know the emotional wounds took longer to heal than the physical ones. And the seizures kept happening. We never had one as bad as the one in the middle of everything that September, but they were more frequent and stopped being accompanied by infections. As that semester of school wrapped up we realized that the public school system couldn’t handle Ella where she was and God came through in fun and amazing ways and we found @chasesplace. To say that it filled a need is an understatement. For 6.5 years it was everything we could have hoped and dreamed for Ella. They loved her so fully and wanted what was best for her and she thrived and she was safe.
The hardest part of this season was that our once tight knit class at church had started to change in amazing ways, but hard ways for me. Friends moved to San Antonio, then England, and Illinois and West Texas…it changed so much and so quickly that I struggled to know WHO would know me when all of the crazy would hit. However, I think I made myself so busy and so social that I made myself forget that I was missing an outlet and a community.
We started the search to find a doctor and an “out of the box” idea that would stop the seizures. She was now maxed out on 3 meds and they couldn’t even give her more. She was on antibiotics to hope she didn’t get UTIs and was having breakthrough ones anyway. We could NOT keep her healthy. As we started 2012 we spent months meeting with doctors in 3 different hospital systems, till my dear friend Jennifer told us to meet with the neurologist department at Cook Children’s in Fort Worth…and we FOUND A WINNER!! March of 2012 we did a 3 day EEG (seizure activity test) and went cold turkey on her meds to MAKE a seizure happen.
Ella and I binged #downtonabbeyand at the end of the REALLY HARD 3 days we did more tests to determine that her seizures happened EVERYWHERE in her brain, not just one localized spot. So, we took her off 2 meds, reduced 1 med and started her on a brand new med to the FDA…and prayed, A LOT. Spoiler alert…we have not had a seizure in 8 years now (but more on this later). We breezed through to her 6th birthday without hospitals, tubes and at a new school. Oh, and the boys seemed to be moderately unaffected by it all…time will tell.