Thanks for Everything, But Can We Go Now?

Juliana has been sprung! We finally made our getaway at around 8 a.m. but in true Juliana fashion it was not without dramatics. Let me back up to 1:39 a.m. when my cell phone rang….

“Um, is this Juliana Ramos’ mom?”
Caller ID on my phone told me it was the nurses' station and I braced myself for whatever they were about to say. They have very clear instructions to call me with any comments, questions, and concerns at any time so I couldn’t really know what to expect. 

“Yes, is something wrong?” Please don’t let there be anything wrong.  She is getting out in 12 hours; can’t I just take her home?

“Your daughter fell out of bed tonight and although she seems to be fine, the doctor wants to send her for an X-Ray.”

I sat up straight in bed.

"An X-Ray of what?" Maybe it’s just finger … or a toe.  Yeah, maybe it's one of those that has plenty of backups….

"Her spinal column" Thud (that was my heart)

"I am on my way."

By 1:57 a.m. I was staring at my daughter sleeping peacefully in her bed all tucked in nicely in her safe hospital bed with the lower side rail, wait ... DOWN?. Hmm....

I took my sleep-deprived and increasingly agitated self to the nurses desk.

"Which one of you is Juliana’s nurse?" I asked. The woman who called me claimed the title. I proceeded to ask her what happened.

"We don’t know. We heard the bed alarm go off and went in to her room and found her basically sitting on the floor in front of her bed like she just slid out."

Uncomfortable with her description when I knew she couldn’t slide out with the rails up like we leave them every night I said, "The rail was probably not up.  It wasn’t up just now when I went in there."

"Oh, we never put all four rails up, that is considered ‘restraining’ and we don’t do that." She defended.

I was getting angry but realized that showing that would not get me answers. "What? Since when? I have been here with her for 25 days and EVERY TIME I walk away from her in bed she has all the rails up because she might fall out.  That is why she wears the bracelet that says, 'Fall Risk.'"

It occurred to me that making sure I was there each night she fell asleep meant I knew she was secure, not that she was secured in a way they would have done it themselves. The nurse offered a bargain. "That’s not our policy but if the family wants all four rails up, we can put it on her chart."

This was her last night and now that I was there, I wasn’t leaving, especially not now that I was concerned about their supervision and any effects of the fall. "That really isn’t necessary anymore since I won’t be leaving her (guilt again crept in thinking I never should have ... I really did already know that). When will she be having the X-ray?” 

"Oh the doctor decided against it. He examined her and she seemed fine." (That’s good I guess, right?)

There were so many things wrong with that exchange but I was just so tired of fighting semantics of care and it wasn’t going to change. I was just going to stay with Juliana until we left and then take our hospital-worn bodies out of there for good, hopefully. The shame is that the staff is full of so many good people who genuinely care about their patients and we developed a very easy camaraderie with them. They were kind and caring and a few of them actually took the time to understand what Juliana was saying and showed her genuine affection. Juliana even started compiling a list of the "cool people" that she liked and wanted to invite to her wedding. So from that perspective I hate for the few bad experiences to sour all the good ones but in every situation, in every profession there will be exceptions to that experience. I tried to make myself comfortable on my makeshift bed of two chairs and just hoped the clock ticked faster. As it neared morning the overnight staff started to make their final rounds and I saw them cautiously peak in, see me laying their like an annoyed old dog and back out of the room without a sound.  Just around 6 a.m. a nurse assistant poked her head in and I recognized her immediately as the one previously involved in the "unauthorized catheter situation." She recognized me as the very unhappy mom. I actually felt sorry for her that they sent her in to attend to Juliana with me staring her down.

"I am here to take Juliana’s vitals and scan her bladder." She said sheepishly.

Without emotion or room for debate I simply said, "No."

"Excuse me?" (Was she shaking? Come on, I am NOT that scary.)

"You don’t need to do that right now. I will take her to the bathroom when she wakes up and she doesn’t need her vitals taken while she is sleeping. I asked you before not to wake her early because then she is up and restless, moves around a lot on the bed and will be calling for me."

"Well, I took her to the bathroom earlier and cleaned her up; I just wanted to see if she needed to go again."

"Earlier, when? While she was sleeping?" I was seeing the full picture now of how the fall occurred.

"Yes, earlier in the night I checked on her and she needed to go to the bathroom." Hmmm.…

"Before or after she fell?" I asked.

Barely audibly she said, "Before."

It was pretty clear what I was insinuating and I really didn’t need to prolong her discomfort. Nothing would be gained from it now. "Well you left the rail down."

"We always do leave one down because otherwise it is considered restraining."

I give up, let us out of here.

Sigh.

"How soon can we leave?"

"You have to see the doctor first and she probably won’t be in until around 10."

"Please page her in case she is onsite already, we would really like to leave the hospital as soon as possible."

And there you have it, released and on our way home at 8 a.m.!

The rest of the day has been soaring upward from there. We stopped for coffee on the way to the store where we got her medicine, then to the beauty shop for a quick touch-up on things left undone for a month. Then home for a nap before our promised lunch out with Cheyenne and Aunt Lori. During lunch she was calm and pleasant and just grateful to be home (and probably eating good food). I asked what was better, the hospital food or this food and she said, “Here, obviously.”  Yeah, I guess that was easy. 

It got me thinking though that we really need to broaden her spectrum of experiences beyond the restaurant du jour. In all of the therapy evaluations and closing remarks we learned a bit more about Juliana from another set of professionals’ eyes. One therapist stated that Juliana is very high-functioning in her intellect for the degree of damage to her brain. (Um, I think that was a compliment but it felt like a ticket to reality land.)  She said that we need to make sure to keep her mind current and learning and should have her listen to current events, read magazines, visit museums, maybe even take a class or two on something that interests her. She needs to be intellectually stimulated in adulthood in all aspects if we want her to be part of it. That made a lot of sense. Ideas are already brewing….

I learned that speech “therapy” will never meet my expectations because I want her to talk better and they are committed to the communication as a whole. I am saying "fix her" they are answering with "help her cope." So while I want them to educate her on articulation they are handing her cheat sheets and picture boards.  They are probably right, but the correction feels so within reach that the assistance feels wrong. As she pointed to letters to spell out her thoughts her voice got smaller and quieter and the effort diminished right along with it. The motivational quote, "performing to the level of one's expectations" sprung to mind and I squirmed as I watched, not at all good at hiding my opinions. (Pretty sure this is the attitude that Phil could never learn to like.)

All evidence points to their methods being effective so I may have to cave on this one. Just don’t expect me to like it. One of the speech therapists smoothly threw in a "this is as good as it gets" comment regarding Juliana’s articulation and I pretty much stopped listening after that and instead replayed all the letters and posts and stories from other TBI survivors who continue to improve their whole life long.  Maybe these therapists and doctors ought to take a course at the "University of Facebook." Get to know your audience a little and your prognosis might be a bit brighter. Wink Wink. It’s a pity they aren’t all required to communicate the hope instead of the generalities. Even if it’s a lie, isn’t that more lending to career longevity? 

We got a similar diagnosis from the Neurologist on staff that reviewed the MRI and said that the structural damage to her brain has likely made the tremors a permanent feature of her appearance. The additional seizure medicine she is on may help with the tremors, but he is doubtful. That one was a bit sharp to hear but I dulled the edge with a dose of well-bred, misplaced, unearned old-fashioned arrogance. Yes, you can call it denial, I won’t be offended. 

As I looked back at the video we created one year after the accident many things don’t look much better to the naked eye but to those of us who relate to Juliana we see the re-acquaintance of Juliana back into our lives and that is worth more than any good report card at physical therapy. I began to explain to Mackenzie and Delaney what the doctors and therapists said about Juliana’s limitations and they barely let me finish.  "Yeah, well the doctors said she wasn’t going to live and they were wrong about that so they aren’t always right, mom."  (AHA! … Arrogance is genetic. They are Spencers after all.) The message they shared was not false hope that they were looking for me to validate. It was innocent faith, the kind that moves mountains because it is unaware of obstacles and limitations. Maybe I should have them administer Juliana’s speech therapy. … Hmmm. … There’s a thought.  Hang onto it girls. It’s a bumpy ride and that might be the most solid thing you get.