This morning Miss Courtney and I headed out for what I thought would be a routine Neurology appointment. Since “Big Bertha” the Wheelchair van is down at the moment, I called in the troops to help with transportaion. Grandma Green to the rescue. She swooped in and I am so grateful for the help.
We got our girl checked in, filled out a zillion pieces of paperwork and game on.
The Neuro checked her out and was pleased that her lungs were clear and fully recovered from her recent bout with aspiration pneumonia. Blood pressure was in the normal range, always a concern with my low blood pressure girl. Then he checked her VNS (Vegus Nerve Stimulator).
“Houston we have a problem…”
Yep, her battery is running down and we need to replace it. UGH! Neurosurgery is required for this lovely little action. I thought we had a least a year left before we needed to make that decision, but no, I guess not.
Once we saw the stats on her device and made a plan, we talked about everything else. Even though he is a neurologist first, he is a very good diagnostician and the head of our medical “Team Courtney”. We started talking about her weight, then we covered her constant battle with constipation, and…and..and…
Two hours later…yes…two hours…I had a fuller understanding of what is going on with my sweet girl. Needless to say it was not the conversation I anticipated having today, with anyone. The long and the short of it, my girl is having a hard time these days doing things that should not be difficult to do.
Her current weight puts her in the “failure to thrive” section of the weight scale. She has a bloated tummy and stick figure for arms and legs, yet she receives over 3000 calories a day. If she has another bought of aspiration pneumonia within the next six months than we need to seriously consider not feeding her by mouth anymore. It could be too compromising for her. Then there is her ammonia level that keeps creeping up putting more stress on her liver. The current output of her kidneys is not where he wants it. It went on and on.
He was frank and honest and open. It was the first time in a long time that a physician has been this open with me and honestly answered some very difficult questions. I thank the Holy Spirit for giving me the courage to ask them and the peace of mind to listen to the answers without getting emotional.
He told me that the outlook for Court over the next year or three would not involve rainbows and unicorns. He actually laid out a timeline and suggested a game plan for the last part of our journey with Courtney.
She has made many a doctor eat crow with their timelines and dire predictions. He is the first in a very long time to lay it all on the table and for the first time I actually listened and asked questions, because I knew I really needed to.
Something deep down in my heart said…Pay attention Mama. You need to recognize the compassion in this man’s voice and the gentleness of his delivery. He has walked this road with you and Courtney for a long time. He needs you to hear him, really hear him about what is coming.
Nothing the Doc told me was a surprise but it’s not what any mother wants to hear…like ever. Courtney’s body has been rocked with seizures every day of her life since she was five weeks old. A body can only take so much before bad things start to happen.
We hugged, Courtney laughed for him and we went on our way with a consult for the Neurosurgeon and some action items that Jerry and I need to discuss and decide how we want to handle in the near future.
When Mom and I got Courtney back to the car I sorta had a moment. I think everything that had been revealed in the last few hours caught up to me and I kind of lost it for a minute or two. One second I was asking about lunch plans and the next I was bent over sobbing.
Thankfully my mother was right there to wrap her arms around me and console me. I have never been happier to have her with me in my life. She was my lifeline this morning. Truly.
Nothing like your calm, level headed, faith-filled German mother to talk her half-Irish daughter down off the “oh shit, my daughter really is going to die before me” ladder.
She hugged and told me she loved me and how proud of me she was.
I cried some more and snot dripped down my nose. The parking lot attendant walked over and asked if we needed assistance.
I cried “No”…he walked away quickly afraid of the emotionally distraught menopausal woman…that would be me.
Mom told me that I was an amazing mother and no one could care for my girl as well or love her as much as I have.
I cried harder.
She told me that none of this was my fault but part of God’s plan for my Courtney and I needed to hand her future back to Him in this moment of sadness and uncertainty.
I blew my nose in Courtney’s bib.
Then I changed her bib.
His plan, his time.
My job is to love her and care for her as best I can. The rest He will take care of. For now, nothing changes. I will take care of Courtney’s daily needs, keep her as healthy as possible, love her as much as I can and schedule a little Nuerosurgery.
Yep…that’s how we roll.
The rest is up to God. It has always been up to God.
On another note…I have received emails asking “where” the PayPal button went. It’s still in the upper right column of the blog, but I will put the button here at the end of the post for those of you who asked. We will be keeping it up for the foreseeable future.
We have prayerfully decided to repair “Big Bertha” and her old ignition coils. To replace the remaining seven coils it will be approximately $970. Everything else on the van has been repaired. Todays news just confirmed this decision for us. We will do this as soon as we can.
Since our new insurance year started July 1, we have to cover ALL Courtney’s meds, therapy, doctors/dental visits and tests until the $3500 individual deductible for Miss Courtney is covered. Yes, you read that correctly. Thanks to Obamacare and other changes in our insurance, our families deductibles have all doubled so we are scrambling a bit these days. Don’t get me started on the adaptive equipment issues that have come up. Oy Vey!
I know many of you who read this blog are going through the same thing with rising insurance/medical costs. It’s not fun, but it is reality. So we will take it one day at a time and do the best we can. We have been more than blessed by so many over the years that I cannot help but be at peace that all will fall in place.
So… do not worry my friends. I am OK. Jerry is OK. Courtney is currently snuggling with Papa and very OK. Big Brother is OK.
Life is a journey…not a destination. Don’t know who said that but they knew what they were talking about. This journey with Courtney has been transforming for us and for those who love her. No matter what the timeline is, I am honored to love and care for her and I look forward to doing so for as long as god allows me to.
As the prophet Jeremiah said “For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.” (Jer 29:11)
A future AND a hope…always hope…
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