November 9th, 2006 by Atomictumor
Sigh.
Its been bugging me since midnight.
The new nurse, Pam, by really no action other than being distant, made me realize how incidental I am to the healing process. Yes, I understand my voice makes a huge difference, and that she can hear me. I can’t bear to hear what I’m probably imagining in her voice when she says “critical, but stable”, which is the mantra the hospital seems to have come up with to ward me off.
It shuts me up. I want more, like liver function, BP, creatnine. When’s the next dialysis, when treatments are. Whats next, what can we do next? I want to be a team, but they’re a team, I’m just a tangent. A very important tangent to BJ, but a useless one to them.
They’re not paid to treat me.
I want to call to find out if they’re going to nail her with dialysis early in the morning again, but I don’t want to hear it. I’ll call anyway, and man, the thing is, I really do think I’m imagining this stuff. That its me wanting more, denying the fact that the upward trend was just her not dying anymore, not her getting better. She isn’t getting much better yet, she’s just not getting WORSE.
WTF? Freakin mind games? Seriously?
Sigh.
Tomorrow will be a good day.
I’ve slept alone for a week, and its getting to me.
I love you so much BJ. I love you. It’s 4:55 in the morning, and I miss you bad.
Nothing to fear, nothing to doubt.
I love you.
November 9th, 2006 at 6:12 am
Not getting worse is a good thing too. It’s the lack of sleep that’s playing with your head.
Don’t let the medical staff ignore you or placate you with phrases like “critical but stable.” The healing team is made up of many people, doctors, nurses, techs, the patient, and the patient’s family. Many medical centers are becoming more aware of how important the family is in the healing process and starting to give classes on how to interact with them. For years, we’ve just dealt with the patient and patted the family on the head like little children to be seen not heard. Times are a changing and we now know that the patient in the bed is not our only customer, the family is too. BJ needs you to be her voice and you are so very important to her. You’ve seen this. It’s important that you understand what’s going on, what’s going to happen and when. Explain to the new nurse(s) that since BJ can’t tell you how she’s doing you need those numbers to help you understand what’s going on inside of her, that you need more information to make informed decisions about her care. (Informed decision: that’s one of the key hot phrases in the medical field lately) If she acts upset or put out ask her if you’ve done something wrong in wanting to know what going on with your wife. You’re concerned, you’re her voice, you her love, you have a right to know. If she still has attitude go to the Director of Nursing. Not the shift supervisor,etc. Go straight to the top. Maybe you’ve mis-interpreted actions through your exhaustion and worry but what you’re asking for is such a small thing for someone to do and because you’re exhausted and worried should be treated with extra kindness and consideration.
I’ll be praying for you all today.
November 9th, 2006 at 6:53 am
Deb is absolutely right.
Checked out Televison on Itunes. I see what you mean about Marquee Moon. I also really liked Glory, and Elevation. Good Stuff.
November 9th, 2006 at 7:02 am
Deb, thanks for giving him sound advice from what sounds like a knowledgeable source. I would have told him the same thing, just not as well. Thank you.
November 9th, 2006 at 7:57 am
You are an important part of the team… and you know it. You’ve followed all their rules, and you’ve made a difference to BJ that no technology, no trained practitioner could.
November 9th, 2006 at 7:57 am
Indeed, Deb, thank you. Last night sucked, but it was all in my head. I can’t expect everybody in the world to pat me on the head and give me a cookie :)
What makes me feel better, is thats what BJ’d say.
November 9th, 2006 at 8:13 am
Glad to see you are better after some rest. Rest will do wonders to ease our minds. Like the others said, remember you are a vital and important part of this team. You are not in the way, you are not a bother, you are the spouse, you are the link to her family, you are her voice to them for her needs / desires / wants, etc. Be pleasant, follow the rules, but don’t be run over and don’t be ignored. Stand firm and courageously defend your right to be part of BJ’s healing team.
We are also glad to hear that she is not getting worse, which is getting better slowly. We are continuing to pray for you, her, the kids, your extended family, the medical staff, and your close friends that are helping you at the moment. God is listening, He is working, and He is moving. All of us around here are praying for His continued movement in and around your life.
November 9th, 2006 at 8:17 am
“she is not getting worse, which is getting better slowly.”
Thats exactly right.
Thank you for being here, Frank.
November 9th, 2006 at 10:19 am
Good morning AT. It is good to see the continued progress BJ is making and you for that matter. Will continue to pray that you will be able to get more sleep as times goes by resting in the peace we are all praying for and in the good news that BJ is improving. Man, to have her able to respond to your touch, your voice is priceless and very healing for you too. Give the boys a hug from me and all of us here at the service desk. We miss man, but we are glad to have your back as best as we can along with so many others. Have a great day - will keep monitoring the site. alway here for you - don’t forget that ok?
Take care, sandy
November 9th, 2006 at 10:45 am
They are absolutely right. You are her voice and it is the nurse’s job to keep you informed of all the details. Just telling you that she is “critical but stable” is doing a disservice to you and your family. As said before, BJ can not tell you what is going on. You need to know that the person taking care of BJ is willing to take the time to give you that information. If this nurse continues to give you problems, just kindly request a different nurse. You need to be comfortable with the care BJ is getting. And comfortable with the person giving her that care.
November 9th, 2006 at 7:48 pm
Speaking of speaking - you may be a lot less incidental than you think. Whether she can convey it or not, your voice is a great comfort to her. If you can’t think of anything to say during the endless hours, may I suggest you sing to her? We did this while my dad was deathly ill, and when we sang his favorite song, it was the only time all day he showed recognition.
Meanwhile, I’ll pray backup for you.
November 9th, 2006 at 7:52 pm
Oh, I’ve been singing. You can see what music is for me, and I’ve totally been singing.
I have a shit voice, can’t keep a note, but I’ve been singing. Because every song (almost) is pertinent to this.