So much to write about, but let me give you the bottom line up front: we have postponed Abbie’s surgery until after the first of the year. We made this decision for many reasons, but I must admit that not at the bottom of the list was the effect it would have on our family during the holiday season. We also had to consider the slim chance of a negative outcome, and whether we wanted memories of that etched on all our Christmases to come. So, there’s the Cliff Notes version of of the last two weeks at our house.
For those of you with a little more time to spend with me today, here’s the topsy-turvy version…On 11/2 we had a not-so-great appointment at Shriner’s. We were not scheduled to see the surgeon that day, but because the previous consent form had expired they sent in the worst possible combination: an arrogant resident and an overambitious medical student. I was shivering in my pants and sweater, but Abbie needed to be unclothed for their exam. The resident looked at me with disbelief after I told him Abbie could understand everything and would communicate by squeezing my hand, and off we went. He didn’t talk to her about what he wanted to her to do, so it was not surprising he got no cooperation from the frozen little girl on the table. When I finally jumped in to ask her to give us soft arms, she did. I was so focused on helping him not hurt her arm, that I didn’t see the student working on Abbie’s ankle at the same time. Golden rule #1 in assessment of a brain injured patient: only work on one part at a time. Guess he hasn’t learned that in school yet… Fortunately, from her position at the head of the table, Debbie could see what the student was doing, and as Abbie began to whimper told him, “She’s in pain, you need to stop!” That really was only the beginning of the fun, but I don’t need to spend your time reciting things that I should forget. I have gotten very spoiled by the wonderful physicians we have, by being taken seriously as a caregiver and partner in Abbie’s medical care, and by Abbie being seen as more than “just a case.” This day made me realize, through tears and shaking, just how fortunate we are. I also, realized though, that this was just one resident, and is certainly not representative of the care we’ve received at Shriner’s.
The trauma of that day (which required me to treat Abbie’s ankle for pain through the weekend) prompted us to follow up on a suggestion that had been given the last time we took Abbie outrigger canoeing. The steersman was Dr. Rob Durkin, a pediatric orthopedic surgeon of all things. He is a great doc, and we consider him a good friend. He mentioned that I should take Abbie to see his new partner, Dr. B., who “everyone calls to consult on the tough neuromuscular cases.” Wanting to talk to another surgeon about the recent changes in Abbie and what that might mean for the surgery timeline, we set up an appointment for the following week.
Abbie began to complain as soon as we got on the elevator, and was almost beside herself when we entered the exam room. I told Dr. B. that she was very apprehensive given what had happened the week before. Then, an amazing thing happened…he talked to her until she calmed down, then turned to me and said, “Tell me about Abbie.” Kind of a broad question, I didn’t know where to start. He asked me to start at the day of the accident. Wow!! So for a good half hour he listened to everything about Abbie from Dr. Tennant to Dr. Becker to Dr. Starr and everything in between. After taking a phone call he returned to say, “You know, meridians and electrical systems in the body are not my area of expertise, but I will agree with you that western medicine does not have all the answers.” Double wow!!
We got Abbie up on the table, and she relaxed pretty well for him. She’s never as loose as she is at home, although for a doctor’s office this was a pretty good performance. But, I got a huge dose of reality. At one point he asked me if her knees bend easily when she’s alseep. “Oh, yes!” I enthusiastically answered. “So, that means her heels can touch her bottom?” “What??” I was in shock…that thought never crossed my mind. Then I realized that is what a normal kid can do. I am so used to measuring Abbie’s capabilities and progress on her own little scale, I don’t even think about “Real Normal” anymore. It’s a matter of survival I guess, both for me personally and for the hope that we harbor. If we arose every day and measured Abbie against the “Real Normal” scale, I think we would immediately return to bed and burrow our heads under the covers.
At the end of the exam Dr. B. said, “I hear what you are saying about the recent changes, and if you wanted to put off the surgery for 3 months, I would be fine with that. If you want to put it off 6 months, that would start to bug me. Her femur head is going to deform into more of a triangular shape, and then we are going to try to fit it back into where a ball should be. I am also concerned about losing the joint surface, so that we will end up with bone-on-bone.” Ugh. Not what I wanted to hear. But you know what? I will take the difficult truths of a friend any day. This doctor LISTENED, asked lots of questions, he HEARD me, and he saw Abbie for himself. I didn’t like what I heard, but I was so grateful to have his input.
I drove home thinking we should just go ahead on 11/21 rather than wait just three months. Ray had been unable to be at that appointment, and planned to talk to Dr. B. early the next week. So, we agreed we would not really discuss it all weekend and wait for that conversation to make a decision. Sometimes you have to take a time-out from the tough stuff.
After they talked, Ray called me to relate to me what Dr. B. had to say. When Ray asked, “You know what the first thing he said was?” My heart hoped to hear, “What a smart little girl, using her switch so well. ” or “I can see that she is really changing.” Again, reality hit me square as I heard, “Ray, you know that she is very, very spastic.” Ugh, another one of those “Real Normal” scale measurements. She is doing so well on the “Abbie scale”, that it was disheartening to consider the bigger picture. But again, the words of a friend cut just where we need them.
Dr. B’s conversation with Ray sparked a research frenzy on a subject I thought I’d never consider: a Baclofen pump. Baclofen is a medication that relaxes muscles. Abbie was on an oral form of it for a few months after her injury, but it so sedated her that I took her off of it so that we could more fairly assess her cognition. The pump, which is implanted into the abdomen, delivers micro-doses directly to the spinal column, so that the patient gets the relief from the drug without the troublesome side effects of the oral medication. We first talked about this two years ago at Shriner’s, but two things kept it from going further. First, the size of the implant — it looks like a tuna can, only half as high. I could not imagine putting that in little Abbie’s body. Secondly, we were told that no one in Hawaii implants them or manages the dosing afterwards. That makes it a little tricky.
I wanted to know what FAMILIES have to say about it, since the professionals don’t live with the day-to-day consequences of an implant. I called my dear friend Sue, Luke’s mom, who related several stories of families just like ours — a few years out from the injury who had been adamantly against drugs and implants. Even though some of them had complications after the surgery, all of them agreed it was the best thing they could have done and were very happy with the outcome. I went to the website of the implant manufacturer, Medtronic, where they had a story from a near-drowning family. Scotty was injured at 2 1/2 just like Abbie, and they waited until he was six to do the implant. One of the most poignant things the family said is that now that they are not fighting high muscle tone each day, their whole family’s life does not have to revolve around Scotty’s injury. I was also greatly impacted by reading what children with spasticity wrote about what it feels like to always have high muscle tone. I’ve not really deeply considered the pain and discomfort Abbie must be in because of her tone. I also wonder what she could be doing if she wasn’t fighting against her body every moment of every day!
That thought has been generated lately by…(this is your reward for reading this far)…Abbie learning to READ!! Last week she correctly identified each of her five flash cards the first time through, even when I tried to trick her. Since then her reading program has arrived, which includes books, audio CDs, and computer programs. She is eating it up!! Her motivation to learn to read is helping her vision, I think, as she now quickly focuses on her books and the computer, and tracking becomes easier all the time. This is truly unbelievable for me, and the most tangible gift of God’s grace I’ve experienced in a long time. My little smarty-pants girl is learning to read, just like a lot of other 6-year-olds.
In talking with her therapists, they also wonder just what she would be capable of if we helped control her tone, since she initiates movement and knows what she wants to do but is inhibited by her tone. Like all things in this journey, there are trade-offs, and implantation brings new concerns about things like scoliosis and overdosing (which could be fatal). But, if I had the option, I would do a trial test of the medicine tomorrow to see if an implant would help. Unfortunately, we are still stuck without anyone to provide this service in Hawaii, and I don’t know that this is feasible thing to be flying to the Mainland every three months to manage. Please pray that we could find a solution. Now that I’ve done my homework, and actually, now that I”ve received some clear guidance, I want Abbie to be comfortable and freer to move.
So, where we’re at now is basically “I don’t have a clue!!”, but I am ever grateful to be holding the hand of One who knows exactly what He’s doing. My thought is that if we are going to do the pump we should get that in place before the surgery. Then, we won’t have to do the extra tendon release procedures and the recovery could go much better without her muscles always pulling on her hips. But, that is just Mom-Logic, I have no idea how that aligns with Surgeon-Reality. Plus, we would have to pull together a team to support us with the implant surgery and management afterwards. In any case, we’ve decided that it is worth giving Abbie a little extra time before the hip surgery in light of how rapidly her body is changing.
I have been relishing my family lately, thus the lapse in posts. We’ve had some more special things these last couple weeks that I will fit into the next update, including a very special visitor. I pray that you have a WONDERFUL time of thanksgiving this week with your families. The weight of my thoughts cannot be carried electronically, but please know how truly, deeply grateful we are for your prayers and companionship.