December 2012 has been a trying month for Kayli and family. Our Family dog, Lucky, went with to visit our 20 year old son (Kayli's older brother) at his college apt. Lucky was visiting Stephen between Thanksgiving break, and Christmas break. On the day before they were both to return, Stephen's roommate admittedly, brutally killed Lucky. We are trying to come up with the $200 for the Necropsy (dog autopsy). We are pressing charges, in hopes of stopping Lucky's killer from harming any other animals, but it does not take away the hurt and pain of loosing our family member. The State's Attrny and police department are awaiting our deliverance of the Necropsy, then the SA will review the results and will likely press Felony charges against Lucky's killer.
When Kayli's surgical date came mid December, I was uncomfortable with putting her under anesthesia with the new diganosis of Pulmonary Stenosis, so Kayli did not have surgery. The surgery date came and went. Then a night shortly thereafter, Kayli was crying inconsolably. Her saturations (oxygen level) was dropping, and she continued to be inconsolable throughout the next day. She had a follow up Pulmonary appt, that her nurse and I took her to. The dr, nurse, and I all had an uneasy feeling about her high heart rate, high blood pressure, and short history of dropping saturations. The Dr admitted her to the hospital, to evaluate her further in case it was indeed pulmonary hypertension. The tests were all coming back negative for any illness or Hypertension. Kayli's white blood count was slightly elevated, but illness was not the cause. When I touched Kayli's left leg, she cried out in pain. I requested an xray, and the results came back with 2 broken bones above her left ankle. She has a broken Tibia and Fibula. We then were on a search to figure out how this could happen. Kayli is in no threat of being mishandled or abused by the nurses (or our family), so we started looking at her Vitamin D and Calcium levels. She was placed on supplements while waiting on results. Upon further testing, her levels were fine, so she was taken off the Vitamin D supplements. The PICU dr concluded that since Kayli has not been in her stander (due to her previous hospital visits and AFO's not fitting her anymore) her leg bones became weak and fragile. Kayli was in a leg cast, but found a way to kick it off! lol She then had a cast the entire length of her leg, above her bent knee. She kept that one on for 2 weeks! Yesterday, she had a half cast (of American Flag colors for New Years) put on. So far, she is tolerating it and has not kicked it off! lol
When we got home from the hospital, her oxygen levels continued to drop. It ended up being because both her concentrator (oxygen) and compressor (mixer) were broke! We have had them replaced, and Kayli's saturations have returned to normal! :D
On December 20th, I got a devastating call. My Mom, Kayli's Grandmother, was in a car accident and died. On the way home from Bible Study, she went unconscious and her vehicle crashed into trees and landed on a guardrail. Kayli's Grandmother did not feel pain, nor did she suffer. She never regained consciousness. An autopsy was not done, so the reason for death is unknown. Our family has been grieving, now for 2 family deaths in the month of December.
While at the private viewing and then the family Christmas Eve party, someone in our family was sick and passed the flu bug on to the rest of our extended family. Our boys had their turn with the flu, but Kayli received her flu shot and did not get the flu!! :D
Today, January 1st, of 2013 starts a promising year of change for our family! We are now using a different (DME) supply company, changed insurances, and are quite possibly changing nursing agencies! We hope to find optimal support for our family's health!
Tomorrow, January 2nd, Kayli is going under anesthesia for a bronchoscopy. The ENT surgeon will be checking her trach size, looking for granulations, and overall evaluating Kayli's airway! She has not had this follow up surgery for more than 1.5 years! Kayli is in great spirits, and is the healthiest of us all!
Recently, Kayli has shown more improvement in her strive to communicate! She now "sighs" when she wants to talk, and is tracking with her eyes consistantely! We acknowledge her attempts, and assure her that one day we will find a way for her to openly communicate from within her body! At school, and now at home, we are working towards providing her with an FM system, so that she can clearly hear us without confusion of disturbing background noises. We are also working towards training her eyes for eye communication!
Yes, 2013 will prove to be a year of change!! With Faith and Hope, change is a good thing! <3
God Bless You!