Wednesday, February 23, 2005

The new new room

Okay, guys, where was I? Oh yeah- Mom was working with OT.

She actually did quite well with the OTs. They helped her to the edge of the bed where she was able to provide limited work towards putting on a sock. This was followed by some forward kicks with the OTs. She then stood twice with considerable assistance and a walker. Afterwards, although she was spent, Mom didn't want to lay back down. So the nurses came back about an hour later and put her into something called a 'neuro chair'. This is a gurney that the patient can be slid onto which then folds into a chair. Mom stayed sitting up for about 2 hours before she had had enough. Humorously, in retrospect, Mom gave both Grandma and myself quite a cardiac kickstart when she signaled her interest in returning to bed by faceplanting in her own lap. I hadn't been there when she was put into the chair and did not know she was strapped in at the waist so I was quite concerned she would tumble out at any moment and conk her head. As it was, keeping her in a tolerable position so she could breathe until we got the chair 'transformed' back into a gurney was quite a challenge in and of itself.

Grandma and I decided that Mom needed a rest and we needed a bracing glass of wine after this adventure so we shot over to Houstons for a bite. Well, shot is an overstatement as it was really choice by elimination as we discovered all the restaurants that have closed on West End. Lunch was nice-partially because I got carded (huge ego boost for a newly 32 year old that currently feels senior to Methuselah). Grandma dropped me back toward the hospital and I walked up- needed a little air.

When I reached Mom's room, the phone rang. Curious, I thought, as we had given no one that number. As I suspected it was someone looking for a previous occupant of the room, I went ahead and answered it. A cheerful voice announced that the ambulance would be there in 20 minutes to transport Ms. Shellner.

Surprise! Road trip!

As the nurse dropped in immediately thereafter and I found the call humorous, I shared it with her. Turns out they hadn't known about the impending transfer either. Oops!

A frantic 30 minutes later, Mom was bundled up onto a gurney and wheeled off to the ambulance. Charlene came by to assist me in packing up Mom's things and trying to reach Roland. We scurried off to the client elevator, trundling along Mom's belongings behind us. Mere minutes later, we found ourselves settling into the new new room while I still had the post about the old new room to publish!

Currently, Mom is stationed at Stallworth Rehabilatation Center where she will stay until her orthopedic procedure. It is quite likely she will return there thereafter for further work before she can return home. This is a huge step forward as aggressive rehabilatation is the key to getting Mom home.

Last night I was allowed to stay with Mom so I could get a feel for her days from start to finish. We got to bed about 10:30pm (thanks to Stallworth for use of a rollaway) but we up off and on all night. Mom had a couple nasty coughing jags in the night, partially the result of a new type of respiratory therapy known as HIT (hyperinflation therapy) that will decrease atelectasis (collapse of the little chambers of the lungs) and improve clearance of secretions. It is unpleasant at best but seems to be working.

In spite of restraints, Mom pulled her nasogastric tube again about 4:30am. (I was up at 4 to help her with some airway issues and it was still in place at that time). This led to quite a mess and an entertaining production as both Mom and the bed were stripped, cleaned and rearranged. Unfortunately, we then had the joy of tube replacement, my new least favorite thing. It is remarkably unpleasant, stimulates nasty coughing jags and eventually both Mom and I end up crying. But it is essential that Mom get the nutrition she needs so she can heal so we just suffer through and squeeze each others' hands until it is over. That done, Mom immediately needed deep suctioning to clear her trach and then remained quite restless till 6:00am. She finally quieted down just about the time the phlebotomists came in to stick her for blood work. Sigh. No wonder she's tired. Its killing me! :-|

Today has gotten off with a bang as Mom has had another course of HIT and a couple visits with speech therapy. She still is desaturating rapidly when the Passy-Muir is attached so they hope to downsize her trach to a 4mm in the next day to improve her ability to communicate.

Finally, for the med heads, I have learned a new scoring system- the Rancho Los Amigos Scale. This is a scale to 8 (or 10) with 1 being unresponsive and 10 being basically normal. Right now, Mom is probably a 5, though this is expected to wax and wane as she heals with [hopefully] an overall trend upward.

As Mom is going to be pushed very hard at Stallworth, please respect our wishes and wait to be invited to visit. This is key for Mom as it ensures that visits do not delay or negatively impact therapy. In addition, it is very important that we allow Mom as much control over her life as possible right now. Therefore, only people she expresses interest in seeing will be invited to visit so that she can feel she is calling the shots. The front desk, nurses station and nursing staff all recommend and support this course and will turn you away if you come to visit without them receiving prior authorization by me. Please be patient and remember that this is not about you or me, it is about her.

Thanks again for all the supportive comments and cards. Every day I am humbled anew by your compassion and ability to identify needs we did not even realize we had. THANK YOU THANK YOU THANK YOU!!!

With love overflowing-

jax

9 Comments:

Blogger Trish said...

Hello Team Scneller!! It sounds like things are progressing nicely. It is good that they are pushing Pam hard I know it is scary for all of you but it is good. My father had major brain surgery several years ago from a stroke and A. He doesn't remember any of it B. They pushed him to exhaustion but C. He fully recovered because of all the therapy so keep your heads up. My thoughts and prayers are still with all of Team Scneller!!!!

11:31 AM  
Blogger David R. Linn said...

J, I have only met you a couple of times but, through reading your postings on this ordeal, I have really come to appreciate your attitude and your focus on doing (and having done) what is best for your mom. For this, I wish to personally thank you; I'm sure that your "full-court press" is a part of why Pam is progressing so nicely. I hope that everyone will respect your wishes concerning visitation; you've made it clear that the rules exist to help Pam and we all want her to receive any and all help she can get.

11:31 AM  
Blogger anne and ben said...

jacqui and roland:
thanks for updating us. i hope that things are going great for you and that rest is plentiful. remember to stop by for lunch at my cafe or call me to ask for whatever kind of food you need. tell pam the wedding plans are going great and i can't wait to tell her about it. also, tell her again how much i love her and miss talking to her. i know y'all have had such a hard time. let me know what i can do. people ask about you all everyday. some you know and some you don't - it is reassuring to know there are so many people thinking of you!
hope you are well,
love,
anne

2:02 PM  
Blogger Robbie said...

Thank you, Jacqui, for keeping us posted on the progress that Pam is making. I know it is going to be hard work for all of you, and all we can really offer is prayers and moral support. Be assured that you do have that.

Pam, I continue to miss you each day and dream of the time when we will make music together again.

All my love,
Robbie

2:21 PM  
Blogger SMc said...

Jacqui-
Since I met her, I always felt that I could see the most amazing silvery light radiating out of Pam. She reached out to help me at a time when I desperately needed it, and I am sure that I'm not the only beneficiary of her caring, energetic kindness. It will surely return to her (and you) because if God's grace can work through her, then it can work for her and in her. If there is anyone in this world who can recover from this, it's Pam.
You have done the right thing by controlling visitation- bravi to you and your family for being strong for Pam when she needs you.
Having been in your position, I know that the kind of tired you feel right now is like no other tired- you guys are strong, but please ask for help. You are so far from alone, and this town is full of people who would drop whatever they are doing to come to help you in whatever way you guys need it- be it moral support or doing your laundry. We love Pam and Roland and through them, we love you to.
ShawnMc

PS Hey to Roland- I look forward to standing next to you again, singing under Pam's direction. And making with the jokes when we are supposed to be paying attention. It will be a sweet sight to see her roll her eyes and smile at us again.

3:50 PM  
Blogger Mary Kathryn said...

Hi Pam , I just wanted to let you know that your Blair Children's chorus sounded fantastic tonight in the rehearsal for Carmina. I am sure it was all due to your hard work preparing them.
I am so glad to read that you are getting stronger every day. I know they all miss you and like all of us, can not wait until you are back on board.
Until then, team scneller is doing a great job taking care of you.

best wishes
Mary Kathryn VanOsdale

9:54 PM  
Blogger Pamela Sixfin said...

Jacqui, So glad Pam has progressed to the point of being able to be moved to Stallworth-and so close to Blair must make her feel good! Will respect the no visiting till you say but please express to her my love and happiness that she is back in Nashville.When you are ready, please call at 383-3599. I'm so happy she is getting stronger every day and can't wait to be able to come and sit and hold her hand. I have known your mother for many years and help her get the musicians for many of her concerts that she has done over the years at Blair, First Presbyterian and Andrew Price United Methodist.We have had many memorable moments together and am looking forward to another one in late May with her wonderful choir that she so lovingly directs!
Please tell her she is in my thoughts EVERY DAY.
Love, Pam

9:55 PM  
Blogger LeeLevine said...

Jacqui, whenever I walk past Fido I look for you inside, hoping to spy you during a break from your labors. I really want to hug your neck.
You are taking The Best Care of your mom, and every one of us--having found ourselves in the same position--would want someone like you at our side, holding our hand in the middle of the night when things get unbearably difficult.
Thank you for the updates, for your dedication to the cause, and for your sense of humor. --Lee

11:37 PM  
Blogger Jan said...

Dear Jacqui: You and Team Schneller are the epitome of "true grit." How you keep your wits about you when in the middle of chaos, and then manage to keep us all informed in your gripping prose still amazes me. The love for your mom leaps from the computer screen with every posting. I hope our love for her somersaults into her room from each blogged message. As much as we all want to be in Pam's presence, we completely understand the restrictions about visiting.Pam's return to health is uppermost in our concern. Please keep telling her that we rejoice in each daily victory and that we are her faithful cheering section--a group that grows daily as people she does not even know continue to ask the rest of us how things are going.

At Tuesday's rehearsal, the collective energy was palpable as VCC worked through the "Lord Nelson Mass" for the first time. The music is rich; the Latin calms our fears; the companionship of singing revives our spirits. All of it is for Pam. Stay strong and keep your clever sense of humor. We love you all. Jan Noble

8:54 AM  

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