I didn’t blog yesterday. It was a busy, long but totally worth it kind of day. And today might be close to a wash for all things blog and work related. So, I’m writing about what is on my mind because I can’t seem to think about anything else.
My niece, Emily, had a long 10 hour operation yesterday. Long. She is an unbelievable example of all things great in this world; strength, resilience, fervor, faith, hope and love.
We arrived to the appointment late and were informed the Dr. only had about 10 minutes to spend with us. Soon the 10 had turned into 45… then she was immediately sent for an MRI. He told us to wait for the results. When the results were ready, we (my husband, father and I) were taken into a “Family Conference” room… we knew it was bad. He told us that she had hydrocephalus (the fluid was not draining from around her brain) and she needed to have a tube put in her head (called a shunt) to drain it into her belly. Then came the punch in the stomach… he told us she had a severe brain abnormality. Actually, the majority of her brain was not there, it was damaged. They are not sure to this day if it was from a stroke, a blood clot or an infection. She was rushed in for surgery the following morning.
Unfortunately, that surgery wasn’t the end of her stay. She had to remain intubated for days after the surgery, and once the tube came out, the nurses noticed “twitching”. She was given an EEG (a bunch of electrodes attatched to her head to monitor her brain activity) and they learned she was having about 7 seizures an hour! So that was the next obstacle… finding the correct meds. Once she was relatively stable the staff wanted to have a family meeting. They wanted to tell us what life for Emily would be like. And it was the most crushing day of my life. We sat in a room, while a team of doctors sat around a table and gave us the endless list of things that Emily would NEVER do. She would never walk, talk, crawl, sit, roll or even smile. She was completely deaf and blind. Can you imagine hearing that your 3 week old baby would never say “mommy” or “daddy”. You never realize how much you have taken for granted!
The above was written quite a few years ago. Since then Emily has had many surgeries, including placement of a G-Tube. She continues to suffer from seizures. And, she continues to laugh, to smile and to tell the world in her own way just how important she is. And, important she is!! Uneblievably so! We later learned that Emily is not deaf and while she does have cortical blindness where her brain doesn’t always register what she is seeing, she does see!
Yesterday Em had surgery on both hips. The orthopedic surgeon had to break the tops of her femurs and insert pins and plates to curve them into the hip sockets which also needed reshaping. They also did some lengthening of some of the muscles in her legs to increase her range of motion. This was all done to decrease the pain that was constant for this beautiful 6 year old!
After the 10 hour surgery, Emily was moved to the ICU where she will be staying for some time. I was able to kiss her and tell her that I loved her and was so proud of how strong she is before making the little more than 3 hour drive back home last night.
While I was driving home Emily required a blood transfusion. Her pain levels increased a bit but she remained fairly stable throughout the night. This morning her heart rate has been all over the place and the last update I have is that the doctors are working to settle it down.
Today I simply ask for prayers and positive thoughts for this beautiful little lady who has been through more than most of us can imagine, all with a smile on her face!