Ready, Set, Operate! ... Again?

When a doctor asks you how aggressive you want treatment to be, make sure you are ready for them to act on the answer. Chris and I discussed it in as much length as his busy international schedule would allow, so we both agreed on the pace and the possibilities, but I was still rather surprised that they made the suggestion today. But before I get there, let me back up.…

Yesterday the doctors and therapists had their weekly conference on Juliana, as they do all the patients in the rehab unit. The point is to discuss what goals we have and how the rehabilitation team might be able to achieve them. Then they evaluate their effectiveness to meet those goals and determine the next course of action. Sometimes that next course of action will be to discharge the patient to outpatient therapy, and sometimes it will be to continue at the rehabilitation facility as inpatient. For this first go around in the conference the recommendation was for Juliana to remain as an inpatient for another week or two (yeah!). Her next evaluation is some time next week and at that time they will determine a discharge date. Those of you following from the beginning (or if you read my book) may recognize this pattern since it is what was done at the Rehabilitation Institute of Chicago back in 2009. The biggest difference between then and now is that in the beginning we had so many therapies, medicines and treatments ahead of us. But now these many months later, we have tried most of what has been offered. 

As you may also recall, we did our best to reduce and avoid medicines and surgeries but sometimes, fight as you may to avoid what you fear, it is exactly the thing you need to embrace. Here is me hoping that we are about to embark on another one of those. So to the question, “What are your goals for Juliana” I answered, “For her to walk” (Sure we have lots of other goals but in the context of what they were here to do, I kept the focus on her large muscle movement.) When they asked Juliana her goal she said, “To be normal." The therapist just smiled in empathetic agreement and tried to rephrase. “OK Juli, but what would you like to be able to do that you can’t do now.” In true Juli fashion she just said it like it is, “Everything." So doc, you have your work cut out for you. If simply meeting her goal was the factor to determine her discharge date, I am estimating 2014.  Insurance and therapy doesn’t work that way so they will move as quickly as they can to do whatever is available at this time. And we have really lucked out. In spite of my whining about the lack of phone calls when they performed the straight cath on Juli, this staff has really shown a detailed interest in my daughter. I must admit, I had to step back and allow them in a bit but once I did, they eagerly and ably came to her aid. And for those of you who recommended Dr. Roy Adair: thank you so much. He has been such a godsend to my daughter and our efforts. He is managing her therapies as well as regulating the dosage in the pump and always has time to answer our questions. We have some pretty awesome doctors in our group like Dr. Scott Rusco and Dr. Stacy McCarty but Dr. Adair is at this moment, our guiding angel and I am so grateful. 

So I have taken a really long way to say: Juliana will have surgery tomorrow.  “Another one” you say?  Yes, it is the final step (that I know of) in getting her crooked foot back to where it started.  Tomorrow’s surgery is designed to lengthen her tendons and finally get her left foot into neutral position so she can stand and eventually walk. You might be thinking, “Why didn’t they do that sooner?”  And honestly some days we ask ourselves the same thing. But as I said, we tried to do things in the order of severity that were offered to us. Since moving Juliana over to RIC in Willowbrook with a new rehab doctor and our own experienced perspective we have been moving faster through the options, some of which were a "do over" of sorts. Now it's time for this option and because we said “very” to the question I mentioned at the beginning, here we are a week into her stay and we are ready to move right along even if we got less than 24 hours to digest it. We knew of this possibility and were already aware of the particulars. 

So that you may understand what we are dealing with, let me interject with a bit of a medical lesson. Those of you in the field will either skip this part because, um, hello this is your time off, or you will read to check my accuracy. Don’t worry, I won’t be taking your day job, I know not what I speak of on my own, I have paraphrased information I was given by doctors and my own Internet research.  (I’m done blabbering on; here is the content I promised).

Juliana has what is referred to as spasticity and contractures. Spastic muscles resist changes of tension by contracting. Her prolonged and continuous muscle spasticity has led to muscle contracture, or shortening of muscles. Contractures interfere with standing and walking. The baclofen pump will accurately moderate the spasticity, it cannot moderate muscle contractures.

Treatment of contractures is treated first by Botox injections, which are effectively temporarily paralyzing the motor nerves. When that has either been ineffective or reached its effectiveness (Juliana is a little of both) the next step is to cut the muscle tendon and lengthen it to relieve the tension on the muscle. Since Juliana has very good muscle function, tendon lengthening is expected to be a good choice.

You may ask “How can they lengthen a tendon by cutting it?” I wondered that, too. The miracle of the Internet provided me with a diagram that made perfect sense.  However, I deal in words here and although I do draw and paint, there is no place for that here so here is my description: they will cut them down the middle and slide the two halves apart and reattach them lower. Extension ladders resemble this concept. Although it sounds like the tendon will be weaker in its reduced width, once healed, the cut parts will fill out with scar tissues.

Ok, lesson over, nurses and therapists may return to their regularly scheduled blog reading. (Hey, welcome back!)

And all this is really great stuff and Juliana is very excited by the possibilities. Her only disappointment is missing her cousin Jimmy’s wedding this weekend. She was really hoping to be able to go, especially because it will have many traditional Greek aspects to the wedding and the reception. We had gone to my niece Tess’ wedding with a great deal of Greek tradition last year and it was so beautiful, the stories I told Juli made her very eager to attend Jimmy’s.  As we discussed it at the hospital today her sister Cheyenne could see she was feeling a little sad and left out so she promised to take video as much as she can and Juliana gave her an accepting thumbs up. The coolest part is that conversation just a month ago would have resulted in shouting and hitting and fits of anger to resemble a temperamental 2-year-old. (Juli, not Cheye. Cheye did all that herself 17 years ago. Love ya, Cheye). But today, and all the days in the last two weeks have been filled with pleasant temperament and more appropriate behavioral responses.  Cheyenne said the other day, “I miss Juli. But I used to get sad missing the old Juli, now I find when I spend too many days away from her; I am missing the new Juli.  She’s a new kind of adorable.” 

That makes two of you.  I am such a lucky mom.