'Old' Is the New 'Black'

Day 4 in rehab completed successfully and Juliana ended the evening exhausted.  My initial concern honestly was that they would not push her hard enough. During their evaluations they seemed cautious and unable to see her full current potential. I worried that they would set the starting bar too low and then anything they saw as a gain we would see as getting back to where we already were. Fortunately, that does not seem to be the case. They are relatively aggressive in their therapy and push her to do more than she thinks she can. We are starting to see some of the "old Juli" (uh, "old" meaning before the surgery, not before the accident). She asks when the session is ending and she is getting a bit mad at herself during her attempts. Nothing terribly disproportionate though, and so far we are not seeing the intolerable anger that was so distracting before. That is a relief—even if the break is only temporary. 

And speaking of temporary break….

Mr. Tremor is still hanging around. I was too optimistic in my last update and darnit, I even waited until three days of rare shaking before I told you. It seems no sooner do I document a fact than I am made out to be liar. I won’t even try to explain it, because the only thing that seems to make sense is that fate is chuckling as it contradicts me and how silly is that—right?  Regardless of that impediment, progress is still being made. 

The most noticeable thing (dear God please don’t let this be temporary, too) is that she is downright pleasant to be around. She is laughing and making jokes (OK, about the same two things but let’s give the girl some time … she’s still warming up). She is still referring to Chris as an "Old Man" even as she sleepily kissed her Medina Mania covered pillow goodnight. Hearing her say it under her breath like true pillow talk (sorry, I just had to go there) even made me chuckle.  And just as the Juli of old ("old" meaning before the accident this time—are you keeping up?) her happiness is infectious and she is helping me to heal. I knew I needed that, but I guess I didn’t know how badly. 

Today she even told her Occupational Therapist that she liked her. She used to hate this therapeutic discipline the most!  "Formerly", "old", "before" … you would think I was talking about years ago and really it was just 10 days ago. How quickly things change. A few little seizures and suddenly she found happiness. 

We had heard that in brain injuries and even Cerebral Palsy people report improved behavior after recovering from a seizure. I am not sure if there is medical evidence to support it, but the change appears to be similar to an electrical surge that jump-starts something in the brain that simply needed ignition. Of course the brain is still such an unknown these theories are conclusions reached by people who lived it, not those who study it. Funny enough in my experience with a TBI, those who live it obtain considerable wisdom that you rely upon often more than the professionals. 

And speaking of professionals … SIGH …

You recall that issue I spoke of a few days ago that I was reasonably sure wouldn’t recur? My bad. I thought I had made my intentions clear but I guess I did not. At 5 a.m. this morning they performed another straight catheter on Juliana and in spite of my very insistent instructions to “Ask me first, call me any time, here is my number, write it on the chart but do NOT give her a catheter without getting my consent and … pssst … you probably won’t get it. You can write that down.”  Yep, they did it anyway and no, I did not get a phone call. I was livid. With shaking hands of my own I called the nurse, the charge nurse and left a message for the doctor. My message was simple: “Take her off the bladder program, don’t ‘cath’ her again and if you don’t follow my instructions I will take her home.”

I was probably a bit unreasonable. I was certainly a bit harsh. 

But when I heard Juliana tell me that she tried to tell them "No" and that "My mom doesn’t want you to do that," but they didn’t understand her and my heart broke. I was buried in such guilt and sympathy for my sweet daughter who could not represent herself. THAT is why we always stayed with her. THAT is why we chose to give up our sleep and comfort and family time. THAT is why I requested a less substantive role in my career to remain focused on her: So that my daughter who had no voice of her own could have mine. It was a good idea then, and it’s still a good idea today. Every patient needs an advocate. A traveling buddy, if you will. It worked well for us in Vegas and the movie Toy Story. (The first reference will be lost on all but 12 people, the second … umm … how many people saw that movie?  Anyway, you get the point, right?)

They have their medical reasons for following this protocol. The baclofen pump could reduce the ability for the muscles to work properly and they are protecting the elimination functionality. I get that it is a good idea, although it was only fully explained to me after I put my foot down, even though I asked many times how this "program" applied to her situation. She was not new to rehab, just new to their rehab. It felt like we came in there for a toothache and they gave her a pap smear instead. Gross, right? Just trying to get you on my side.

We have been the ones there taking her to the bathroom and tending to all her needs prior to the hospital and every day in the hospital and trust me when I say, we know what her "normal" is.  Why couldn’t they listen to me when I said that she was doing just fine? I know, they are professionals, just doing their job, I don’t understand all that they are trying to manage, and on and on. And although I can see the sequence of events including the particular individuals not knowing that I was to be called (I do not think it's ok, I just can visualize it all going down) I was sick to my stomach picturing Juliana trying to tell them "No" and them not being able to understand her.  

It took me the better part of the day to stop kicking myself, believe me. I don’t mean to say that they are unqualified, because the nursing staff has been really great. Although, I must admit we make their job extremely easy, since they don’t have to do anything for her, but it's not for lack of their trying or asking. I guess they aren’t really doing anything other than what I am doing: trying to do their job the best way they know how.

However, my job as parent has a boss that I feel a great obligation to not let down: God. Call me motivated to succeed.

Are you in a caregiver role for someone you love? Have you encountered similar instances involving care from professionals? How do you handle them? Share your stories.