It's been a long time since we've had true shunt drama.
Five years and 2 months since the last revision.
There's been the occasional benign emergency room visit that started with ceaseless vomiting at home but the incident checked out as a stomach bug. Those have even been few and far between in the past 5 years.
This kind of life makes you settle in. Gives you a chance to tuck all that information of risks, symptoms, signs, and fears in a different place than its perch in the forefront of your mind. To focus on other things. There's no forgetting what it feels like to be in that shunt malfunctioning crisis mode but it's not a place I sit and visit long in solitary for when I do I am crippled by it.
Today Cayman's shunt wasn't quite right after receiving a routine MRI scheduled to just check on things. It had been a year since her last one. We took her to the hospital and she was happy. After the MRI she was sick and miserable. Just about an hour and a half Cayman began to sit down, lay her head against a lobby chair, ask to be carried, and her face pale. We went to her clinic appointment 2 hours later after the MRI at which point Cayman walked like her bones had been replaced by noodles, limp and wobbly. She laid down on a bench and complained, "Mommy, my shunt is hurting." She told me and shortly later, "My forehead is hurting." It was a pivotal moment in her maturity. While my heart was breaking knowing she was ill because of her shunt, I soared to hear her tell me that she had a headache!! The past 7 1/2 years we've been kind of on our own to figure out Cayman's symptoms and what she is feeling by objective data. Awareness, understanding, and articulation opens a whole new world of subjective data that can help us help Cayman faster if she's ever experiencing a shunt failure. A relief comes with that.
We spent 6 hours just hanging out in the doctor's office hoping Cayman would start feeling better. Her shunt setting kept bouncing around and had to be reset several different times. She kept vomiting, sleeping, vomiting on and on. It was hard to watch her feel so miserable when just a little bit ago she was so silly and happy. The staff kept watch on her shunt setting. When it finally did lock in at her preferred fast drain setting of 0.5 she slept propped up for 2 hours and then woke up feeling much better. Only a small wobble left in her walk was all that remained of the brutal morning she had. Well and maybe a slight lingering headache. She went back to being unreliable with expression of that subjective data. But it's comforting to know that when it's big and serious I think she will let us know.
I recalled a memory of when Cayman was really little the Neurosurgeon dialed her shunt up from a fast drain to a more preferred medium setting. During that procedure the shunt bounced around settings. He set it again and it stayed put. The very next day Cayman had a shunt failure and I recall the doctor's lamenting words, "Yesterday she was happy and today she is not. From now on when she's happy I'm not going to change a thing." That same perspective has now broadened to include MRI scans. She is apparently so sensitive to the slightest intracranial pressure change. In 2010 she had a shunt failure and showed first signs of it at 3:30 a.m. and less than 6 hours later she was in full cardiac arrest. Today in less than 2 hours she was symptomatic when her shunt setting moved from the fastest rate (0.5) to the slowest (2.5). And that was with the shunt working, just draining slowly. I can't imagine a full failure where there is no draining happening as the fluid completely builds against her brain and how quickly we need to be ready to react.
I have to express this, I have to get it out for just a moment for the sake of healthy realism - It's stressful going to sleep knowing your child may die in theirs. There is an article
I read on a study of special needs parents where they found the same
low level of hormones from stress that is equated with those in chronic stressed combat soldiers.
That resonated deep inside of me.
So how do I do it?
That's my answer because I've never known how to do this life without His wisdom. For many, many years I have prayed each night as I go to sleep, "If she needs me, wake me." and I fall asleep trusting Him.
There's something very important to understand about this trust. It's a confidence that He will see me through whatever this life may bring.
And my other answer: "If you imagine the worst case scenario and it happens, you lived it twice," Michael J. Fox said that. Great advice, wouldn't you agree? - don't imagine.
"So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today." - Matthew 6:34
Stay present and enjoy the small things.
2 days ago