May I have this Dance?

By Jan 28, 2015 5:43pm

(My thanks to Anna, as I took the liberty of paraphrasing parts of her Facebook update this afternoon to write this post.)

Today was a GOOD day as Susan’s heart responded to the heart pump (RVAD) being turned down somewhat with positive results! Dr. Groh was very happy with what he saw, and there are still some things to bring into balance. Over the next several days Dr. Groh will be adjusting (downward) the medications that have been supporting her heart function while the RVAD continues to support her heart. The plan is to let her body adjust to not having the support of the medications, then work with weaning her heart off the machine. Sometime in the near future (maybe Friday?) he will do another trial of her right ventricle function to see how things are progressing. Tomorrow there is a plan to do another heart catheterization to be sure that nothing else is going on in her heart. It is a delicate dance, and this doc is a gifted choreographer!

Today was also the very difficult conversation about “if this doesn’t work, what next?”, and Dr. Groh said that he has been in full communication with the heart transplant center at Duke University Hospital (one of the major transplant hospitals in the US). No plans or decisions in that direction are being made at this point, but it is at least an option being offered if her heart does not appear to be strong enough on it’s own. Susan is now fully aware of the seriousness of her condition, and will take all of this into her meditations and practice as we move forward.

Susan has been in this dance with This Moment with such grace and acceptance, and she accepted today’s success with some sweet element of relief and joy. Dr. Groh even said that she could begin to increase the bit of applesauce/mango puree she has been allowed, from a couple of teaspoons 2-3 times a day to somewhat more. She takes in each bite with a delicious combination of gratitude and pleasure. There IS that smoothie from the juice bar coming one of these days soon!

Your prayers continue to be so welcome and deeply received …

Gassho,
Kathryn

Deepening Prayers …

By Jan 28, 2015 9:46am

… today Susan’s heart will be “tested” as the support from the RVAD will be decreased further; the docs will make use of a couple of sensing devices to see how her heart responds and can make determinations from there. I won’t go into a lot of tech-y details right now. It’s simply time to deepen prayers and hold Susan closely. Smile at her heart!

With loving arms holding you all … another post later today,
Kathryn

A Very Busy Day

By Jan 26, 2015 9:02pm

This was a long and busy day for Susan. Busy partly because she is more and more engaged in her daily care, asking questions and understanding more and being proactive, like requesting a time to discuss plans with her doctors. She is still very weak and needs a lot of help but she is an active participant in her care which is wonderful to see.
Each day she shows more progress. Today it was passing her swallow test and being able to send out for one of her favorite juices. Just a few sips from a teaspoon but it was a start. With help she sat up in bed and dangled her feet for a little bit longer today and with less support than usual. She is able to move her hands and legs more freely in bed, reaching for and using a suction device if she needs to. Today she was able to hold the phone to her ear and talked to her good friend Charleen in Hawaii. Her voice becomes stronger and a little less hoarse each day making it easier to converse. Considering where she was just a short time ago, it was a joy to watch Susan and her daughter Anna comfortably talking back and forth from my vantage point on the other side of the bed.
We all would like to be a fly on the wall when her surgeon sees her tomorrow. After four days of being away I think his jaw is going to drop when he sees how much Susan has improved. It’s all been small and steady steps adding up! The goal to steadily strengthen Susan’s muscles, improve her nutrition and increase her stamina is all to decrease her heart’s reliance on the assistance of the ventricular pump. The surgeon is planning to “dial down” the pump some more this week and allow Susan’s right ventricle to resume its job of pumping blood to the lungs and then back to the left side of the heart. Susan especially needs your continued loving prayers and healing energy.
She asked me today to let everyone know how grateful she is for you keeping her in the light and that she can feel everyone’s love and support and that she believes it is all helping her.
She particularly enjoyed seeing pictures of her dear friends in her Innervision group.

With so much gratitude for the steadily emerging essence and beloved spirit of our dear Susan.

Very Brief Update

By Jan 26, 2015 3:58pm

Dear friends and family,
Kathryn loves to expound on things in an eloquent manner and I don’t share that gift.  So my update will be very brief.  As of today, January 26th, Susan is very stable and continues to grow stronger daily.  Still, things are a bit precarious as long as she continues to be connected to the notorious RVAD (right ventricular assist device or “heart pump”).  She has been in a holding pattern the past few days and things may start moving along more later this week.  Her heart surgeon has been out of town and returns today or tomorrow and it will be good to have him back on the premises and have the ability to communicate with him. As of today, I’m back in Nashville for the time being so Kathryn will likely make the next post some time tomorrow or tomorrow night when she returns to Asheville.  If there is any more significant news between now and then, I will try to post it.  Keep that love and light a ‘comin!
Love and peace to all,
Kathleen

Ahh Sooooo…..

By Jan 24, 2015 6:54pm

Susan's dog "Mister" and friend.

Susan’s dog “Mister” and friend.
I have gotten an update or two today … but have been traveling so haven’t had the chance to send out an update. Susan is in a holding pattern for the weekend, with some more PT to build strength, time to be alert during the day, and time for some much needed REM sleep at night. All the perfect Rx for her continued recovery. Everything is being held at, or nearly at, the same levels to simply let her achieve some level of homeostasis from which to move forward. There are some minor adjustments being made in the RVAD machine, but ever so incrementally, and she is doing great with the little changes. Baby steps … baby steps. Exactly what is needed right now.

I have taken these couple of days of relative “no change” to fly home to be with my ever-so-generous husband who has supported and encouraged me through this entire time. I will return to Asheville on Monday night or Tuesday morning, as flights, weather, and Susan’s needs/wants allow. I know she is being loved and supported in every minute, and I can take a little time at home to touch base and renew my own grounding to bring it back freshly revived for my dear Susan.

Susan has not been allowed to eat anything since entering the hospital on January 6th. Yes, she is getting nutrituion via an NG tube (Naso-Gastric), and some other IV supplementation, but nothing that lands on the taste buds! She is supposed to pass a swallow test before that can be allowed, as they don’t want her to accidentally aspirate any liquid or food into her lungs, which would NOT be a good thing. However, yesterday Susan got quite an unexpected treat! Several of us were standing around her bed talking about food-ish things, and speculating on when we might be able to bring up a bit of a juice bar treat, or a little smoothie that she would enjoy. We were hoping it would be fairly soon. Right as we were talking about it, her nurse came in with a little container of applesauce … and said Susan could have a little bit of it. She felt that Susan was doing so well with some talking, has a strong, productive cough, and tolerated occassional ice chips well that it would be OK to have just a little apple sauce. Honestly, you’d think she’d brought in a gift from the Maji the way Susan responded! She was so grateful, and savored small, slow spoonfuls. You could watch Susan transform right in front of us … she blossomed and the very act of eating seemed to bring a deepened sense of Life into her.

Yet sometimes the things we savor most are short lived. :(  I got this from Miss Kathleen today:

Suz flunked swallow test due to her weakness so we got busted today 😁. She’s good with it.  I’m hanging out in her room.

What I am amazed at is how easily Susan seems to “go with the flow”, and that is such a powerful lesson for me. “Oh, a little applesauce treat? Lovely. Ahh soooo.  “Oh, no more applesauce for now? So be it. Ahh soooo.”  We could all use a little more “Ahh sooo” in our lives, yes?

Another update from Kathleen, a bit earler in the day while I was flying home to Rochester:

Update for 1/24:  Susan is better by the day.  Heart pump  is being very slowly turned down to let her heart take over.  She is quite weak but hanging in there and getting stronger.  Please keep love and prayers coming.   It takes a village and Suz has a pretty darn good one on her team.  ❤️ Kathleen

So, here we all are, in this dance together, loving, singing, caring, being, letting life unfold in the moment and in the larger scheme of things. We am so very grateful for each and every one of you “out there”, checking in, leaving messages, giving tributes, signing the guestbook. It is all part of the healing journey … for Susan and for all sentient beings.

Hands palm to palm
Kathryn

A Wellspring of Love is Sourced by the ALL of it …

By Jan 22, 2015 12:39pm

2014 Susan in Paris around her visit to Plum Village w Thich Naht Hanh

2014 Susan in Paris around her visit to Plum Village w Thich Naht Hanh
… she is resting better the past couple of days, though life in an ICU can be disorienting and confusing. There are lights, activity, procedures, alarms, humming, and buzzing nearly 24-7, and it robs one of their sense of day or time or place. Susan continues to be alert and very responsive, using her voice more and more as her energy allows. She VERY MUCH wants to get to one of her favorite juice bars … and we interpret her focus on a jaunt to a juice bar a positive thing as it shows us she can focus on something outside of this ICU. We reassure her that just as soon as she can leave this whole hospital setting a trip to the juice bar will be on her schedule! And a short term goal is that when she is allowed food, we will ask for clearance to bring her something from her favorite juice bar!

Some minimal PT has begun, with some range-of-motion (ROM) exercises to keep her joints limber, some arm and leg stretching as she is able, and the PT therapists have sat her up on the edge of the bed and let her dangle her legs over the edge. These little things are a VERY BIG DEAL at this point, and that she can complete them successfully is wonderful. Her strong spirit makes up for the weakness in her body at the moment.

“The plan” continues to be to allow Susan to rest, heal, and build strength, and at some point in the not-too-distant future to begin to see if she can be weaned from the RVAD. That will be a slow and patient process, and we will post the progress as it unfolds. Your patient love is so graciously accepted. Visitors, outside of the very few who can see her, will continue to be restricted both for infection control (absolutely critical to someone in and ICU much less in the hospital in general) and to not overwhelm her with the energy of visiting with people. Susan, our every present “social director” would love for more people to be allowed up to see her, but this is not currently an opportunity. But we tell her of all the love and messages that are coming in every day, and now that she is more aware, we can read some of your thoughts and well-wishes to her. She is so very uplifted by you all!

Katy has headed back to Atlanta to be with her family for a few days, a much needed respite from the watchful seat she has occupied here at Mission Hospital. Anna took the opportunity to “change watch” for a couple of days and headed home on Tuesday evening, and will return Friday and be here for the weekend. I am awed by the devotion and care Katy and Anna show to their Mom, and am glad we are in a period of quiet where they can each get a little “family time” with their husbands and children. It is a rejuvenating and necessary action for balance and wholeness in this entire healing journey we have embarked upon together.

I’d like to take some time to acknowledge the “folks back home” who make it possible for those of us who spend time HERE. It takes the support of family and friends to make all of this possible. Katy’s and Anna’s husbands have been carrying the full load back home, and have stepped up to the plate with a willingness to make it possible. As much as the kids miss their moms, they are faring well, if not just a bit differently than when Mom is home (are the Dad’s spoiling them????). My husband has been nothing but generous, and I know the significant others / families / friends of everyone who spends time here holding the space all contribute to this Sacred Circle of Healing. We are all intrinsically a part of this Circle, and it would not be possible without each and every prayer, meditation, phone call, note, message, visit, meal cooked, and healing thought offered. No one thing is more or less significant than the other, and I would like to offer my very deepest gratitude for the ALL OF IT.

And for all of you,
With palms touching,
Kathryn

2014 Susan & Kathleen in Paris around their visit to Plum Village w Thich Naht Hanh

2014 Susan & Kathleen in Paris around their visit to Plum Village w Thich Naht Hanh

Breath of Fresh Air

By Jan 19, 2015 9:09pm

As you know, Susan was taken off the ventilator today! Within minutes she was transformed and expressing a deep and abundant relief to have her “natural breath” back. For the first half hour that I was with her she would quietly exhale her thankfulness at being free of the ventilator, yet also acknowledging a deep gratitude for the life-saving purpose it plays in her wellness and recovery.

She can only whisper very quietly, and we need to listen attentively to hear what she is saying to us. She asked just a few questions about what was happening around her, but mostly just wanted to connect with people who were around her. Her “big request” of the afternoon was whether she could have some coffee in the morning! And she made sure that I knew that she had “good coffee” at her house. If I can find it I’ll make a thermos for her and bring it to her room. The nurses weren’t sure if she would be allowed to have it by morning, but they encouraged us to bring it anyway, in case she gets the green light! [I just talked with Barbie, and she will get some from Earth Fare, which she believes carries the coffee roaster brand that Susan enjoys.]

Dr. Groh was pleased that Susan has now had three “uneventful” days in a row … and expressed that is exactly what she needs to continue to heal and recover. No big changes will be made in anything they are doing; they want to let her body take the lead, and when it is ready for less (or more) of anything, that is what will set the pace. We all know the turtle crossed the finish line first!

Susan’s joy at being able to breathe on her own is a reminder of how precious our breath actually is. Many of us have some sort of meditation practice and use our breath as a vehicle for centering and focus. I am reminded of Thich Nhat Hanh’s short meditation:
“Breathing in I calm my body.

Breathing out I smile.

Dwelling in the present moment,

I know this is a wonderful moment.”

I am more than certain that Susan has been practicing this meditation over and over in the recent 13 days. Yes, this is a wonderful moment.

May all beings be free,
Kathryn

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