Thursday, October 6, 2011. The day started just like most days. Brie was snuggled up beside me asleep. Her tummy was nice and full after her usual NG tube feeding. All of the sudden her little eyes snapped wide open and they shot up and to the right and there they froze. I knew something wasn't right as I tried to get her to blink or move her eyes. Nothing. I grabbed her up and shook her softly. NOTHING! My heart jumped up into my throat as I tried desperately to get her to respond. NOTHING! It seemed like an eternity to me. In reality, it was only a few seconds. It seemed like an eternity. Was this a seizure???
My mind wanted to reject the thought. Noooo, it can't be! I raced to the computer to look up "absence seizures". My heart sank. As an R.N., sometimes I wish I didn't know anything about such things. My gut was telling me that it was a seizure but my heart was saying, NO,NO, NO! I had a vague recollection of what an absence seizure from nursing school 21 years ago but I still didn't want to believe it.
You see, inside Brie's sweet little brain there lies an awful secret. You can't tell it when you look at her sweet face. But inside, just waiting to rear it's ugly head, lies a potential electrical storm. The majority of kids like Brie, who have Polymicrogyria, end up with seizures at some point in the lives. They can be mild or they can be severe. Most of the time it comes when they get a little older but they can start anytime. And that is another awful thing. Never knowing. Forever on alert. Always watching every movement and wondering if "that" is a seizure? And babies have all sorts of weird jerking movements anyway. Ugh! :(
So I had to make that call. The one to my daughter - at work. My heart was breaking. It's such an awful thing to have to tell her and all the worse because she was at work. Awful:( We made the decision to take her to Wolfson's Children's Hospital here in Jacksonville. Brandy (her mom) called the doctor's to let them know we were going. And that is how it all began.
They decided to hook her up to a 24 hour EEG monitor. That is what this picture is. As bad as it was, she is such a little trooper! Adorable even bandaged up for an EEG. We are so grateful that no seizure activity was seen on the EEG, but that does not mean she didn't actually have a seizure. All we know for sure is that she didn't have any while she was hooked up to the EEG machine.
Friday, October 7th was a nightmare experience with her doctors. Her attending hospitalist is the biggest moron. He said whether or not she had a seizure was the nothing to be concerned about! And he actually wanted US to convince her ENT doctor to do surgery on her larynx for her laryngomalacia because her ENT said NO to him! By the the end of the day we had heard talk of surgery on her larynx, surgery for her G-tube, possibly removing her salivary glands at some point in the future, the possibility of her needing a tracheostomy if her breathing became worse!
You should have seen the doctors, each obviously uncomfortable with how to care for her and trying to convince each other of their need to DO something. All of which was over-reaction with the exception of the G-tube, which she did have placed a few days later.
We did end the day with wonderful news though. We had a consult that day with Dr. Anthony Perszyk, a geneticist whom we had an appointment with on Jan 23, 2012. That appointment in January was actually a cancellation as he was booking new appointments in March 2012!
It turned out much better than we hoped because he has actually WORKED with Dr. Dobyns in Seattle with PMG kids! We were so happy and relieved that Brandy and I both broke down in tears. We still don't have a definitive type of PMG, but Dr. P is going to help us find that out. He ordered some more tests. We are awaiting her results from genetic testing labs and an eye exam that he ordered from Nemours Opthalmology department. He is sending her scans and records to Dr. Dobyns to get his input. This is SO awesome!
Getting the G-tube placed was quite stressful. Seeing her tiny little body going into surgery, so scary :( Worse, they were afraid she would have to remain on the ventilator so they sent her to the PICU overnight. I stayed with her and it was an pretty awful experience. I cannot get over the lack of care provided in hospitals these days! Sometimes it makes me embarrassed to be a nurse.
Anyway, she got to go home last night. Another new adventure for all of us. I'm so grateful to be able to see her face without that NG tube but the button G-tube is bigger than I thought it would be. Hopefully she will continue to gain her ability to eat by mouth and this will all be over soon.
Stay tuned for a post about doctors and other caregivers. It is shocking to say the least! The last thing a family needs to deal with is incompetent healthcare providers but they seem to abound. :(
