Today we visited a new neurologist, to discuss him managing the Baclofen pump for Abbie. We spent an hour talking, and spent only a minute or two on the pump…just long enough to agree that it is not the solution for Abbie. The first portion of that hour challenged me greatly, as we looked in depth at both of Abbie’s MRIs, one right after her injury, and one from a few months ago. ( I must give a disclaimer up front that there may be too much info in this update for some, but we’ve learned something so important today that I want to share it in enough detail for other brain injury families.)
We’ve never had an indepth explanation of the injured areas, so I really valued the time Dr. Y. spent going structure by structure. It broke my heart, and I had a decision to make. I could either look at this very devastated brain and sink into despair about what may never be, or I could look at the images with reverence and complete awe, wondering how Abbie could have survived, and how she can possibly be doing what she is doing these days.
There is not one area in her brain that is untouched by her injury. Even her brainstem has evidence of damage and is not the normal shape. The ventricles are enormous, now filled with fluid to make up for tissue that has been lost. The Dr. said a few times, “This is chronic, this is not going to change or get better.” Thankfully, he was kind and I knew he was on Abbie’s side, so that didn’t hurt as badly as it could have. And, I have learned to trust in Abbie and in God more than films and prognoses.
Things got very interesting however, when Dr. Y. said, “Looking at these images, I actually think Abbie has two different things going on with her muscles. She obviously has spasticity, but underlying that is a movement disorder, called dystonia, where the muscles fight each other instead of one contracting and one relaxing. When you give her something like baclofen or tizanidine, it works for a short while, but then unmasks the underlying dystonia, so then things get even worse than they were. My mouth was agape, I am sure, because that’s EXACTLY what we saw in Abbie when we tried these drugs again after three years of not using them. No one could explain why a drug that was supposed to help actually made her tighter….until today.
He told us all this while Abbie was in the hall, so she wouldn’t have to hear the discussion. As soon as I wheeled her in, he took a look at her hands and called it “classic dystonia.” Most people who hold their thumbs on their palms (cortical fisting) pull their hands inward. Abbie’s have always been flexed up. He then looked at her feet and said the same thing…the outward rotation and the position she holds them in are hallmarks of dystonia.
The great news is that there is a medication to help with this problem! So , the plan is to take her off Tizanidine, put her back on Baclofen, titrate up to a good dose, and then add Artane for the dystonia. Using this method he gets results equal to those of the pumps he’s implanted, so he prefers not to do something invasive, and incur all the risks of having an implant, if we can stick with oral meds. I am VERY happy to go along with that line of thinking!
I am comforted to finally have an answer to my question of “WHY?” about her hips. I was so frustrated with myself for allowing her hips to dislocate when I knew in my heart it could have been avoided. I thought I should’ve had her standing sooner and more often (true), that we could’ve done some things differently in the first year (true), but now I realize those things wouldn’t have compensated for the fact that Abbie had untreated dystonia pulling on her femurs, that was actually heightened by baclofen. Her hips DID NOT have to dislocate and deform, if the dystonia would have been properly diagnosed and treated early on. You can probably envision the tears of rage, disappointment, and sadness that I’ve shed today. We seem to always have to learn everything the hard way, taking the longest route possible. So, I am hoping that Abbie’s story may help other families who are perhaps dealing with some of these same issues.
What I am holding on to , as the despair and anger try to cross the moat, is that now we can help Abbie. There is hope that we can make her more comfortable and more able to move. She doesn’t need to walk for her quality of life to improve dramatically…enough arm and hand movement for her to work a complex communication device, better coordination with her eyes to allow her to see well, using her tongue well enough to eat again…these would be huge, and I think they may be realistic. Just knowing that we only have one surgery on the horizon and not two lowers my shoulders at least two inches.
When my grasp slipped today, the rope of God’s love, tossed out by a caring woman, rescued me. I ran into Dawn at the elevators on Monday, and she said she’d recently been thinking of Abbie and I as she did her Bible study. (How she said it was too humbling and overwhelming to put in print.) But, she laughed saying she’d intended to write me a card, had gotten it out, and then not sent it. Boy, could I relate.
Well, today, tears streaming down, I saw an envelope on the counter that had arrived yesterday. I’d not had a chance to open it, and without a return address I had no clue who it was from. Turns out, Dawn decided to send that card after all. Ray asked me to read it aloud, so in halting gasps I said, “Thank you Lord Jesus for teaching us to REMAIN, to ENDURE, and in the end, TO FINISH.” She wrote a wonderful note inside and then said, “I close by claiming this scripture for all of you, and especially Abbie, ‘What is faith? it is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see.”
The verse that gave us Abbie’s middle name. I almost couldn’t bear it. God was reaching right down into my brokenness and saying “Remember!! Remember Who I am. Remember how I care for you, how I love Abbie. Do not faint. Do not lose your vision because it is not yet in sight. Remember Me.”
Thank you, all of you, who send prayers and thoughts that may not arrive in the mailbox, but rescue us nonetheless. I rejoice in the fact that we have a Father who gives us beauty for ashes. Looking at those images, that was all I could think…these are ashes, Lord…we trust you for the beauty.