How many times have I sat here at her bedside? I have lost count over the past 22 years.
Last night Miss Courtney's brain decided to mambo without her permission. At 10:08 p.m. all hell broke loose. She had TEN grand-mal seizures over the course of two and a half hours. We brought her into Georgetown's ER in the midst of the craziness. Once we got her hooked up to everything and got the first dose of Ativan in her, things began to calm down. Unfortunately, she needed more help, so they gave her another dose.
Then her blood pressure began to do the dance it does when she gets these meds. For the first time in her almost 22 years, Jerry and I had to make some hard choices. After much prayer and deliberation, we decided on a verbal DNI/DNR in the ER. That would be a do not incubate/do not resuscitate order. They didn't require our signature on anything, yet, which means we could rescind it if we chose. Once we made that choice there was a great sense of peace for both of us.
We have debated this for many years, prayed about if for longer than that. It is not a choice I ever expected to have to make for either of my children. Ever. Now that it has at least been done verbally, there is a sense of relief. Strange but true.
Things finally began to calm down around 3 a.m. Your prayers lifted us and calmed our spirits and helped so much. So.very.much.
As I type this it is 3:25 p.m. on Friday afternoon and we have seen every specialist there is to see. She has been cleared medically, as in there is no underlying infection, virus or underlying medical issue that would cause her seizures. That is good news. Good news indeed. Now we are dealing with neurology. The seizures have stopped for now and she is waking up from the Ativan nicely. The Docs are more than impressed at her stamina and tenacity.
Am I surprised?
That would be a no.
DNI/DNR be damned. When Miss Court and the Good Lord above decide that it's time for her to fly home to His arms, then she will go with grace, dignity and peace. I know it with as much certainty as I know my own name. Until then she will fight like her grandfather fought.
The Nuerosurgery team has decided that she needs to have her VNS replaced sooner rather than later. So we will be scheduling that surgery for a few weeks in the future later today. Then, since Courtney is doing so well, her blood pressure is normal and she is waking up nicely form all the Ativan, we hope, pray and begging God that they will let us take her home tonight with a change in seizure meds to help cover the faulty VNS. That is our prayer and our hope.
We know that sounds crazy to many of you, but that's where we are. We can take care of her at home, meeting all her needs and she will be happy in her own bed. So will her Mama.
Speaking of beds, she is currently laying in the very model that we would like to purchase for her to use at home, all comfy and snug. We will have to continue to pray about this issue and trust in God's provision because they got her weight easy peasy.
BTW, she is back down to 86 pounds. NOT good at all.
So we have some work to do at home while we wait for the VNS surgery, but she seems to be out of the woods for now. Keep those prayers coming my friends. They are lifting us, encouraging us, helping us keep our eye on the prize, an eternal perspective for our girl.
If you are able to help with Courtney's adaptive equipment costs:
Labels: Courtney's World