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

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,

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,

From Anna; afternoon update

They took her off the respirator. To see her this happy is a gift. To hear her whisper is a gift. To see her so alert is a gift. To be able to give her what she wants because we understand her is a gift… We also saw Dr Groh and he confirmed what we thought…slow days of waiting and gaining strength! Keep the prayers coming!!!!
Xoxo Anna (the nominated texter)

Morning has Broken … and it is peaceful

By Jan 18, 2015 6:49am

Dear Ones,

Our dear Susan continues to heal and recover, bit by bit. Yesterday was another “good” day, which we all interpret as a day with no significant changes or set-back events. She remains increasingly responsive, aware of all that is happening around her, and welcoming the few visitors she is allowed with beaming eyes and gentle smiles. She is now able to respond somewhat when we touch or hold her hand with a little curl of her fingers in our hands. It is with joy that I send her light, warm touch out to all of you who continue to pray and meditate for her wellness and peace of heart.

Susan continues on the RVAD (Right Ventricular Assist Device – or “heart pump”) and she remains on the ventilator to assist with her breathing. She is now breathing “mostly on her own” with some assist from the ventilator. Yesterday and today they continue to “dial it back”, letting her do more and more of the work of breathing herself, until she can be weaned entirely off the machine. It will be lovely to hear her voice when that happens! The RVAD will remain in place for a while, yet, while her heart continues to heal and strengthen.

For those that have an interest, and to ease the concerns of others, it is only one chamber of Susan’s heart that is having problems, her right ventricle. Her left ventricle and both atrial chambers are working just as they should. And even that right ventricle is doing some of the work that it should. Of course, one needs all four chambers of the heart working together, but I think it is valuable to know that as she rests and has the assist of the RVAD that part of her heart muscle continues to have the opportunity to heal and become strong. We can ALL remember to “smile at Susan’s heart”!

Kathleen was able to play her harp for quite a while for Susan, and we know it brought her some comfort and release from her ongoing discomfort and the general stress of being in the hospital. Susan remains in a state of constant awareness and being in the moment with all that is happening, yet it is very exhausting to be existing in the world of medicine, machines, lights, and discomfort. Whenever some of the staff or doctors would walk by Susan’s room, they would slow down and enjoy the lovely music coming from Kathleen’s gifted fingers. I overheard one doc in the hall say, “Well, this is a first – and a good one at that!” As we left last night the nurse that had been with her all day asked that Kathleen simply leave the harp in the room so that she could come back and play it today. I am certain that the people that are working up in that CVICU (Cardio-vascular Intensive Care Unit) are being healed in their own ways by the music. The nurses pour out so much of themselves for 12 hours at a time, with care and devotion to their patients – to Susan – that they need restoration as much as those for whom they care.

Barbie has daily (or several times daily) been able to work her “magical” healing touch on Susan … and we can see the powerful effect it brings. Susan relaxes visibly, and it is clear that she is experiencing healing at a very deep level. Such gratitude for her gifts to Susan.

There are so many gifts that everyone offers, and even though not everyone can physically come to visit with Susan, those gifts find their way into Susan’s room, and into her heart. She knows she is loved and honored, and acknowledges it every day. When we tell her of all the love being radiated her way, she smiles and nods with a knowing look. She is clearly receptive to all your prayers and meditations, to the candles lit, the flowers in vases in her name, to all the rituals offered to her in every way.

With only the deepest gratitude for all your offerings and love,

Music at last…

By Jan 16, 2015 10:11pm

Susan returned to surgery this morning to remove some clotting that had formed in her chest, and to antiseptically clean everything. Although these surgeries are concerning, and never without some risk, the doctor told us that each time she bounces back to a level that is better than it was before the surgery. So, it’s been a bit of a two-step dance of two steps forward and one step back. We are hopeful that she will get more days in a row for recovery and healing, so that she doesn’t have these setbacks.

She did come through the surgery quite well, and was becoming alert and responsive once again by the end of the day. When her daughter, Anna, asked her if she would like her CD player and some music, she nodded quite enthusiastically, “Yes!”. So, Anna brought up the player this evening, and put on a lovely harp CD by our dear friend Kathleen, who has been here with us this whole time. Susan was clearly very pleased to have the quiet music playing in the background of an otherwise busy room. We will try to find a smaller player that we can connect to a set of headphones for her, and can further reduce the general noise of an ICU. All “good” sounds, mind you, as they are the whir, ding, click, and hum of many machines assisting people in getting back to an independent state of health. Yet, is is distracting … I know her deep and committed meditation practice helps her stay calm and focused on the goal of returning to full health.

In deepest gratitude for you all, and for your continued prayers and healing energy being sent Susan’s way. I can tell you, from standing at her bedside, that she feels all the light and love being sent her way, and is responding to it so positively. Just keep it coming!

Simple wants are enough…

By Jan 15, 2015 3:33pm

Last night and today have been quiet; adjustments to Susan’s meds keep her stable and ever-so-incrementally moving in the direction the doctors would like. And yet every moment is a moment separate from the last and separate from the next. Susan continues to reside in this very present moment, breathing in and breathing out, resting, healing, meditating. Every moment that she continues without event, without an incident, is a moment of “success”. There is nothing more than that.

Today she indicated that she would like to have some moisturizer for her mouth … the first time we have been aware of her “asking” for something to make her more comfortable. It is the first sign of her actually being able to participate in her care, which I interprete as a positive thing. She is shifting around a bit to try to get more comfortable, which we know is a difficult thing. And, she has been even more aware of our presence as we have come and gone throughout the day.

When I think of her needs, which in a medical sense are so profound, I am struck my the simplicity of what brings her some real relief. It is a gentle swab of her mouth with some moisturizer on it. And she responds so gratefully, with an acceptance of “that is enough” for now. What can I accept as “enough” for now with the depth of gratitude that Susan is radiating?