Well, they moved her. She's on 3N again. I spent 3 hours at the hospital pacing, fretting, talking to nurses, RTs, the assistand manager of 3N, making sure all her stuff moved, getting her setup in a new room, and venting the whole time.
A whole new crop of people to teach how to communicate with her. Some have worked with her before. But a whole new level of care, again, and the concerns that brings. So, I was vocal about them. And Sara is concerned, too. It took hours of addressing things and her seeing me talk to people before she settled down a bit.
I told her that they backed me into a corner. Move her to 3N or she's not leaving hospital - to home or Santa Rosa Kaiser....
So I told her that she needed to do her best and tell me if she is not getting the care she needs or feel she needs. When I talked to the nurses and RTs, I asked them to take the initiative and pass on to the next shift what our concerns and requests are to their teammates. We've all worked way too hard to let her get sick again...we all want her home.
I asked the assistant manager to have someone come check on her between the nurse and RTs. Ward clerk, nursing student, another nurse walking past room. Just pop in and ask her if she is OK. One blink is yes and she'll feel better looked out for. Anything else in blinks, get her nurse and we didn't miss anything. straight. simple.
I know that Dr. Asshole was in the hospital while I was there. He had to write some new orders for her, but avoided 3N like a hornet was there. (because there WAS!)
I also asked them to order a soft-touch call button. takes only a little force and can go next to her head. she's able to rotate her head enough now to maybe call for help herself. I'm just frantic that she's going to cough stuff up and plug her tube. I know i'm probably freaking myself out, but she's come SO far and worked SO hard that any setback is hard. She just wants to get home, get closer, see her friends, and rest and start working daily on her road back.
I told her that tomorrow morning I was going to be on the phone pushing for an immediate transfer from Walnut Creek to Santa Rosa - Until we have nursing and resources that is all I can do.
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ReplyDeleteUsing bright fluorescent paper and the computer, make a sign to put above the head of her bed.... one blink = yes.... two blinks = no..... or whatever she uses to denote yes and no. We did this for Josh and it helped. IF they don't see it, then put another one OUTSIDE on her room door, and if that still doesn't help, put another one on the wall next to her outside door.
Josh used the switchplate, it works at the hospitals. They should have them, or you can buy one, or have them borrow one from the rehab center.
Bring in cookies (heck, they can be Oreo's) and leave them in Sarah's room with a note for the staff, "FREE: Please take a cookie and ask Sarah how she is doing." Believe me, they will stop by to get a cookie!
Here's a poem I wrote for Josh, and put it outside the doorway for ALL visitors/staff to read, of course replace Josh's name with Sarah's:
I may not be able to move right now,
Nor speak using verbal words.
I can see, hear, feel and think,
And you may wonder “how?”
My brain is fully as it use to be,
It’s just my arms and legs won’t work for me.
Just talk to me like a regular guy,
Some people shout, I don’t know why.
Ask questions that I can answer with yes or no,
Or use my letterboard if you know the code.
When you walk into my room with me,
Let me know what you’re doing, talk to me.
I’m not a sack of potatoes lying still as can be,
I’m Josh, a regular guy inside, that’s me.
-Tina Otte
Josh's mom
Also, ask the Social Services coordinator for a "Hospital Sitter". They should have them. These are people, sometimes volunteers, that just come and sit in the room with the patient. Having someone with Sarah 24/7 is the way things are going to be from now on. The Hospital Sitter could help be your eyes and ears and be able to get a nurse in the room. Hospital Sitters don't provide actual care, they are just in the room (they are most often used for emotionally unstable, dementia patients).
You can't count on the staff to pass info on from one shift to the next. Get numbers for the nurses station and charge nurse, and call often, each shift if necessary, ask questions, keep them accountable.
Kristina, you are an amazing women, a wonderful mother and you WILL MAKE IT through all this and bring Sarah home!
You are all in my thoughts and prayers.
-Tina
For anybody who doesn't know about Josh and Tina - I am part of a few discussion boards about brain stem stroke and Locked-In syndrome. These are other patients and families across the globe who are living with LIS.
ReplyDeleteThey have been and continue to be a great source of information and support for me. I'm not able to contribute to the boards much, but I do keep them up on major changes with Sara.
Tina - You have been such an inspiration to me..you have no idea how much you've helped already...