September 28, 2010: update from Maryland

The view still has trees, blue sky, leaves coloring slowly into autumn, the feel and warmth of the air and temperature changing, but it's a view well known, appreciated and loved. The view from the house on the hill with the river around it, finding its way to the Chesapeake Bay. Gramma and Pop's house, where Sage has spent so many happy days, along with many others in and on this journey of the last several months.
Sage got to Annapolis safely, in a caravan of two, with Pop, friend Catherine, friend Margaret and yours truly making their way down the Atlantic seaboard last Tuesday and Wednesday. The pack up of 54 days began last Monday, when the attending doctor on the medical floor came in to say there was really no reason for Sage to stay in the hospital much longer, as there were no mechanical or foreign objects (i.e. a trach or IV site) to keep her there. Vital signs, the fact that she was eating, walking, talking and feeling 'well' suggested discharge within 24 hours.
So the process of sorting and packing then began. It increased exponentially on Tuesday while lunching in the hospital cafeteria; Sage's nurse from the floor found us there to politely say the room was needed (soon) and if we could, ahem, move along, it would be duly appreciated. Pop and Catherine had gone to get the rental car and the Donpineo family car that required a bit of servicing before the 450 mile trip south. Those remaining finished the packing and then put those bags, boxes, pillows and comforters onto two wheelchairs and walked away from the world of being an active hospital patient.

what a feeling....

We sat in the hallway near the Au Bon Pain and did nothing. Watched people go by. Looked up and around at such a different view. Relished the state of being out and not having to go back in, not having anywhere to have to go in to. Sat on a couch to be part of a crowd of humanity going through the day. No lines, sounds, bracelets or numbers to identify you with a connection to this place or things going on behind wide doors and closed curtains.

look ma! no bracelet!

To just sit and do nothing. Watch. Wait. Sit back. Listen. What a wonderful thing to be anonymous for a moment.... and then it was time to start moving, as the cars were back, it was getting to be late in the afternoon and the journey south was waiting. Goodbyes and thanks to a few of the many we were able to see, as we slowly walked down and along the open, airy hallway. To Nurse Pauline and everyone in the intensive care unit who watched over Sage in so many ways. To Dr. Trus who came to visit often and gave reassurance simply in his presence, in stopping by. To Dr. DeLong, one of the six attending ICU physicians, who watched over Sage so thoroughly and with such care. To the Respiratory Therapists who worked their magic every day.

Dr. Trus and Sage 

Sage and Dr. DeLong

We continued to walk slowly, then it was out to the main entrance, to fill up the cars and drive away. Down the road and following the path that took so many - and so many took - over these days and months. Onto a highway, over a river, past trees and leaves of yellow, gold and red, past granite, hills and views that were really quite beautiful. Not saying anything, not needing to say anything, just looking at the world, which seemed so new and fresh and well, just plain wonderful.

Out of New Hampshire, then through Vermont, into Massachusetts and Connecticut,  where we stopped for the night and for sleep. The next morning was Wednesday and a whole new day! so off we went, over that amazing sweep of the Tappan Zee Bridge. The Manhattan skyline only just visible to the left and south down the Hudson River, then into New York for a moment, onto the Turnpike, into New Jersey, Delaware and then Maryland. 

The air changed, as did the land. Farmland, grasses and crops of soy before another amazing sweep, this time the Chesapeake Bay Bridge. Annapolis to the south, again. And finally and at last home to Gramma, to family, friends, familiar food, rest, Aunt Hilary and cousin Will coming to visit, bringing flowers, raspberry mousse cake, steak, asparagus, love and hugs.

YAY!

Aunt Hilary, Sage and Sophie

Aunt Hilary, Sage and cousin Will

Sophie, Sage and friend Margaret

The next day being Thursday, Sage went to Baltimore to meet Dr. Lisa Keamy, her new doctor (thank you Hilary!) who is as awesome as those up in New Hampshire. An appointment with Dr. Peter Sloane, Sage's pulmonary doctor, was arranged for Monday (yesterday), so a chest xray had to be taken on Thursday along with a pulmonary function test on Friday. This, according to Dr. Sloane, could indeed be a new record - to have that test in less than a week of being 'decannulated' (trach tube taken out). So  Thursday and Friday were long days - necessary ones - but long. 

And the length of both those days was completely exonerated on Friday! as friend Catherine had arranged for a massage therapist to come to the house and give Sage and Sophie a massage. Turns out the massage therapist was none other than Kate, Catherine's wonderful daughter-in-law, who gave birth to baby Ian on August 6th. It was a doubly lovely gift of massage by a good friend and meeting that beautiful baby boy.  

Then a quiet weekend of eating well, sleeping long, taking naps, doing nothing. Trying a walk around one block. Playing scrabble. Seeing Uncle Andrew who came to visit on Sunday morning and closing the day with cousin Andrew visiting that evening. Having Ray, dad to Courtney (best friend to Sage, known each other since the age of two), from next door come over for a visit. Going out on the river with Pop for a boat ride. 

Yesterday, Monday, Sage went back to Baltimore to see Dr. Sloane, who is, yes, equally awesome (she then visited with her Aunt Hilary, Uncle Mark, hung out with cousins Peter and William and got to Chipotle with them!). The theory and thought as to what happened to cause this - well that will be another posting, sooner rather than later, promise.

What is more of a priority at this stage is the prognosis and thought as to what can be expected..... this continues to unfold; as Dr. Sloane confirmed again yesterday, having such a run in the ICU, being so acutely, critically, ill, the fact that Sage is 19 was and is a very, very, very good thing..... She is young, strong, healthy and that in part is what saved her, healed her, brought her through something that, frankly, the majority do not live to tell the tale. (Apparently only 20% of those with such a diagnosis make it. As in do not die. That means one out of five people live and that, obviously, four do not.)

Her youth, along with the will of iron and size of fight she possesses internally, will continue to contribute to her healing. The 90% of people who survive ARDS (acute respiratory distress syndrome) are, in one year's time, back to their pre-illness lung function. The other 10% have fibrous scarring and restricted function of their lungs. There are four phases to this kind of illness to the lungs, and thankfully Sage and her lungs are in the resolution stage, the fourth phase. However, there is no way to predict who falls into which group - the 90 or the 10 percent. As a wise person said to yours truly one day in New Hampshire, much of medicine is about waiting and seeing what will happen.

Wait and see. Patience and courage. Discipline.

And so the next chapter begins, and ongoing healing, resting, renewal. Additional doctor visits and specialists, further testing and procedures. And of conditioning body and mind, spirit and emotion, muscle and soul into the wellspring of life and energy. And always, always of giving thanks and being grateful. Gratitude and thanks for all of you, all of this, all of you in this and during this. For Sage. For life. For love. For the power of what is possible. For people who care, who are smart, good, kind, who do not give up, even when the numbers suggest otherwise.

Continue to stay posted, peaceful and positive. Please know it is always is, and continues to be, a great gift to hear from you, to have you be part of the circle and to read your words and thoughts. Blessings on your day, your life, your loves and your view.

having her cake, and eating it too!

post script: Sage's snail mail address is as follows:

Sage Donpineo

412 Ferry Point Road

Annapolis, MD 21403

Day 54, afternoon update

A post was promised later on in the day on Saturday (seems so long ago that day!), and as time is elastic in this world, these words at last find their way here.
As of noon today, Tuesday, September 21, 2010, also apparently the International Day of Peace and the Autumnal Equinox, Sage is no longer a patient at Dartmouth Hitchcock Medical Center here in Lebanon, New Hampshire.
She is discharged. In her street clothes. Out of the room and off the floor. No lines or numbers anywhere near her. Nothing that suggests anything of this marathon that, in her own words, "is coming to an end". Simply a gauze bandage at her neck, covered ever so stylishly by a wonderful blue scarf from her Baltimore cousins.
And so that's it. Is that it? That's it! or just the beginning.... The drive south to Maryland will start this afternoon with friend Margaret from Boston, friend Catherine from Severna Park, Pop and of course yours truly. A caravan down and past the trees, the leaves, the crisp air and the blue blue, oh so blue sky.
Sage was 'decannulated' yesterday morning; two members of her most awesome respiratory therapy team, Patrick and Kim, came in, took a look, popped it out and placed gauze on the stoma. With time, sleep, good nutrition and just strong young blood, it will close up of its own accord.
This is certainly not the last post, oh ho ho oh no. But this particular news just had to be shared with all of you, near and far, who have been here in the dark of night and the blaze of summer days.
Could you even all be named? Probably not, but certainly blessed and completely held like a blanket on the heart. Thank you, thank you and again thank you. Gratitude and joy abound. Thank you for being part of this journey, for being connected to it and being part of the miracle that has sourced it for so long.
Stay posted, peaceful and positive. Blessings on you, your day, your loves and your commitment to community, faith, love and connection.

Sage and most awesome Sasha, who was part of the team on July 29...

YES! shower and that power breakfast of sausage and more sausage....

Sage and most awesome Dr. Carroll, who was here for the beginning leg of the marathon

most awesome RT's Kim and Patrick

for the love of the Sage Bug, no. 5: 09/20/10

It's been awhile since I've been here. Today now being Monday, even though we are no longer in Room 12, this reflection is one that's been with me for a few days. I find I need to finish it and let it go, as it is pertinent to the world of hospital, recovery, health and healing, or at least my experience of it. And as time goes, everything moves and goes. Too many happenings and too many hours passing oh so quickly, which is a strange thing, because, again, one of the strange things that happens in this world of intense care and hospital life is the plasticity of time, and also how at the same time a single moment can also stretch on for an eternity.

I think of and wonder about this thing we measure as time and our awareness toward it. It seems everything is organized and managed by the hour, the week, the day that we know it to be. It's what makes our individual and collective worlds work. It's what we agree upon, just like it's understood that green means go, red means stop, no matter where you are in the 'modern' world.

But time in the world of intensive care, well it's strange. Whole hours, mornings and days pass, and where are you in it? tidying up a windowsill, sorting clothes for laundry, waiting for the medical team to round, listening to alarms and watching machines, having tea and one of those good cookies from Au Bon Pain, and already the sun is setting in the western sky. 

These days pass not so much by hours anymore, but rather by events, observations, rituals. Counting to 15 every time I wash my hands (apparently the magic number for reducing the risk of infection). Noting where the medical team is on the unit for rounds and when it is our turn. What chapter and book we are on. Looking at the board at 6:30, day or night, to see who is on for the next twelve hours, the name of the one caring for Sage and writing the notes, answering the bell, giving meds, ice chips or a cold drink, reassurance while checking the lines, turning off the IV or ventilator alarms, shifting pillows as needed or desired. 

It's equally strange to realize that anything can become 'the norm' if you do it for long enough, that maybe it is only a matter of time before whatever is happening and whatever you are doing is what you become used to. So being here now for as many days as it's been, I don't know if I am used to it. In such a weird way, it's just become what is. There is no past or future, it's just now.  

The last time I started this particular reflection it was day 49 or 1,176 hours of being in the Intensive Care Unit. I'm told that's a lot of hours, but I don't know. Is it? What's a lot? How does that get measured? Is it relative to what you're doing, where you are, what you're in the middle of? Is 49 days different from one and a half months, in the way it sounds or feels? I'm not sure what I know anymore, except for some 'oh yes ah ha' moments of clarity and understanding that find me  - or I them - in very unlikely places and times. Usually when I am not looking for them, and most often when I am quiet, still and unsuspecting.

I've come to know a couple of things since being here, which certainly doesn't mean I would wish this experience on anyone or that somehow it's some sort of great thing to be going through. Again, it just is what it is. It's not so much what comes to us that matters, but how we meet it, greet it, deal with it and be with it.

So what I've come to know. A lot. More than I realize and it may take me 49 days times 10! before I might be able to verbalize or see it. But for now, there are three things that float down like feathers before me that I'm able to catch and hold, if only for a moment, in words:

1. Medicine is as much as an art as it is a science.
And the science part of it is often only as good as the person interpreting it. There are the numbers, the assessments, the "if this is happening, then it means this" approach, the learning about, the knowledge of the systems, the organs, the way everything works together in the human body. That is most definitely a science, and I think the 'how' of that science - how it is spoken, defined, deduced, considered - is an art. It's an approach and understanding that can't be measured. It has to do with the humanity of the person taking all that in, and how s/he does that can be, and often is, artistry. I've seen it here, both the science and the art of it, and when it is present in that human form, you just know it, like the taste of water in the desert.

2. The human body is, quite simply, remarkable. 

It is, it has to be (so I think) some profound expression or force or source of God or just love, far beyond our comprehension and grasp. It's amazing the body works the way it does and that it works so well. It's equally amazing that more doesn't go wrong with it more often - that with such an incredibly complex system, it all flows so smoothly the majority of the time. 

It's kind of remarkable as well that the majority of us know so little about our physical body, how it works and if we have any idea of the chemistry and biology within it. The levels, the nutrients, the organs and muscles, membranes and pressures and relationships needed to have it all function - it's a wonder it all comes together and kind of crazy that we take it for granted the way we do.

3. Patience and courage are most definitely disciplines. 
Through the forging of both and with a splash of grace, they can be transformed into virtues - but it isn't a given and it doesn't always happen. Again, I've seen this, been witness to it, through the company I've been keeping, the one constant through these days and now months: Sage. She is so uncomplaining it's humbling. Accepting of it all without being resigned to it. Clear as a bell as to what she needs. Just knows herself and goes from there. Whether sleeping, awake, sedated or conscious, the inner core is so ridiculously solid. You don't go through something like this on any level without a level of inner discipline that is unspoken; being in the presence of it, well it's hard to fathom, but it brings you to your knees and tears to your eyes. 

So perhaps all there is to do is stay quiet and keep the palm open, pay attention and be ready to catch what will come, if one is so lucky and bold to find it. That's all I seem to know for now, among so much that there is still to know. And really I guess underneath it all, behind even these words, just lies gratitude. For all of it. For Sage. For the gift of life and the gift of life in Sage and personified as her.
As amazing and remarkable as medicine and the human body. Bless all of it, in every moment.

Day 51 update

Good Morning and it is such a good morning! The day and everything in it has a whole new look, a whole new world it seems....
So much continues to happen here in New Hamphshire and the world we have been inhabiting.
Sage is out. Gone. 'Graduated' from the Intensive Care Unit (best graduation I've been at!). Room 12 is a memory as of 2:40 p.m., Friday, September 17, 2010. 50 days after first entering it, the room in the corner facing west with the beautiful view of trees and hills is no longer occupied by Team Sage and the Miracle Channeling Team.

Sage was given the green light yesterday (friday) to be able to move to 'the floor' (a room on the medical floor)  after successfully being on the 'high flow' system for both night and day for all of Wednesday, Thursday and Thursday night, where she was getting warm mist at the rate of 21% oxygen, or room air. Her medical team came in on rounds during a breakfast of four sausages and Veronica Mars, and said that today, Friday, was the day. Moving. Out. Away. Done.
So while Room 12 got slowly packed up and the other room was being cleaned and prepared, Sage kept moving forward in her progress by being 'capped' around noon yesterday. What this means literally is that the trach had a little plastic cap put over it so that no air would go through it. This then meant that Sage was breathing entirely on her own, through her own mouth, noise and upper airway - which she did easily and thankfully.
And Room 12 is a memory! of 16 fresh and wonderful hours. Sage is in a regular room with no noises, save the noises that a regular room offers! There's a bathroom that has a door and a shower! There's no ventilator in the corner! a door with a latch that closes! a nurse that comes in twice a night! and room for a cot with one of the most comfortable three inch, saggy mattresses yours truly has ever slept on.
Oh and by the way, all this capping and trials off the high flow system came with the best, most wonderful and waited for moment ever: Sage's voice. She speaks. She talks (That was Thursday's news which we couldn't quite post, as Sage was wanting to surprise Pop's visit today with a spoken greeting of "hi Pop, how are you?" but couldn't wait that long).
Life is good. It is a sweet miracle that is full of awe, wonder and just a great big 'yes'. Kind of like Sage.
More posting later today is promised with all the wonderful details, but this most treasured news wanted to be shared with all of you, near and far, wonderful family, friends, friends of friends, friends we have yet to meet.
Thank you. Thank you for being with us in and on this journey. You have made such a difference. Your presence, support, love and care is so treasured.
Peace and blessings on your day, and huge gratitude for being in our lives.

Sage and most awesome medical couple and people, nurse Jen and DART/medic nurse Albert

Sage and most awesome nurse and person Pauline

Sage and most awesome friend and human soul Mary

goodbye to room 12 and the green chair

Sage and most awesome nurse Jane

Sage and most awesome respiratory therapist Patrick

Day 48, early morning update

Greetings from a crisp sunny morning in New Hampshire.

Sage had a good day yesterday, sleeping in until 9:30 and waking up to a breakfast of  bacon and eggs, then had some physical therapy. The occupational therapist as well came by to check on things, noting that Sage was doing so well and so much on her own in the realm of self care that she did not need to be seen by occupational therapy anymore.

Sage spent the whole day on a 'trach collar' with the high flow system, which is effectively a plastic bubble or cup that sits over the trach site and delivers warm air through plastic tubing for Sage to breathe in of her own accord. No pressure support and no PEEP. It's like a warm mist or humidifier delivering air around the trach site - kind of like sitting in front of a fan that is blowing warm air directly at your neck - and Sage being the one to generate both the inhalation and exhalation of air. She did this all day yesterday, for 12 hours, and spent the day exercising, watching more Veronica Mars with Mary (who is now hooked!), skyping and laughing with the Donpineo family in Germany, her friend Johanna (who also lives in Germany), and her cousin Luke in Rome, getting up, stretching, and then going for an early evening walk - only connected to an oxygen tank.

walking outside the ICU with nurse Seamus and Vicki the RT

walking around the atrium

looking north and out

This again is a huge step in the right direction of moving out of the ICU, to a room on the floor, or just out of DHMC. Apart from the ventilator, Sage is very close, so close, to graduating from intensive care. The only thing keeping Room 12 occupied by the Donpineo/Don/Pineo/Team Sage/Miracle Channeling Team clan and posse is the ventilator. The next few days will probably bring a 24 hour trial run off the ventilator and Sage having only the trach collar.
This may sound like not much of a big deal, but it is. Sage is effectively retraining her lungs and muscles to do work that the majority of us take for granted when we go about our day and just breathe. Being off the ventilator and then being off any support or air being delivered, even with the high flow, is sort of like that breath each newborn takes - using the lungs for the task they were designed - and just trusting, knowing, that the breath in, and then as importantly out, will come easily and comfortably.
Today, Wednesday, Sage will try a 'fenestrated trach'. What this means is that the plastic tube (the 'shiley') inside her trachea will be replaced with one that has holes in it - sort of like swiss cheese, as explained to us - so that air can pass around the cuff and the tube. What this means is that air will pass above Sage's trachea, and what this means is ...... that Sage will start to be able to speak!! as the reason she has not been able to use and exercise those vocal chords is because air has not been able to go up and past the trach site. At first, her voice will probably be hoarse, but as we all know, Sage has forces beyond measure.
Alleluia and stay posted. Blessings on your Wednesday, and for those in the market, turkey season (the wild ones it is hoped) begins October 1st.... 

Day 47 update, late night

Greetings from the land of trees slowly shifting to autumn colors and darkness falling incrementally sooner as we continue through these days.
Sage had an eventful Sunday and Monday; it is hard to keep up with her and report on the progress!
Sunday found her at a minimum pressure support, and the plan was to continue to come down by two for the day and give Sage another trial run on the 'cpap', for maybe two hours.
Well.
A particular doctor came in - one that we know well, like and trust very much - mid-morning and with inimitable fortitude and style checked in with Sage, made sure she was up for it, and set her pressure support to zero. As in 0. As in "let's just go for it"  and see how you do, because if you don't try you just might not know - and Sage was good to go and gave the definite 'yes' and thumbs up for such a plan.

Sasha the doc and Sage talking shop about numbers....

vent settings

here we go!

She then spent the rest of the afternoon and evening - not just two hours - effectively breathing on her own and providing her own pressure for both the inhaling and exhaling breaths. She did great and her respiratory rate was equally great, so......
Monday found Sage with a trial run of being off the ventilator and connected instead to a high flow of oxygen - meaning some oxygen was being provided around the trach site. She, however, was generating the breathing in and pushing out of that air. In the world of respiratory therapy and pulmonary progress, this was big. Sage was doing the work of breathing, exercising muscles around her lungs that have been unused for awhile, and she did fantastically well. The only thing you have to watch for is to not tire out the lungs; it is a matter of pacing oneself, challenging and working the lungs but just enough and not overly so.
Sage stayed on the high flow all afternoon and into the evening, taking a walk outside of the unit and down the hallway before the evening came on. She skyped with her dad Mark and brother Nathan in Germany, watched more of the 'Bourne Trilogy' (third time in as many days) and had an ice cream sundae with hot fudge sauce before dinner.
 She had a great evening meal of broccoli, mashed potato, sweet potato and chocolate milk, watched 'Veronica Mars' with friend Mary from California, and promptly fell asleep around 11.
Earlier this morning, Sage had a moment whereby the 'cuff' around the trach tube (which inhibits the flow of air upward) was deflated and she actually spoke! albeit a whisper. The next step is to continue with the time off the ventilator, retraining the use of muscles,  vocal chords and airways that have been unused for a bit of time, and just keeping on. Sage's words, however, were clear, direct and very much Sage: "hello. I want to get out of here."
Gratitude and thanks to all of you for continuing to keep Sage in your thoughts, prayers and hearts. Good rest to all.

Day 45 update

Another steady stable day for Sage, with a few happenings in it.
Friday was a relatively quiet day, a day of rest, of watching movies, taking mid-morning naps and eating good food. Alice had to leave on Thursday evening, after trimming Sage's hair and bringing so much love from that city of brotherly/sisterly love! (Philadelphia). Friend Risa, who among many of her wonderful talents is a massage therapist, has been here since Wednesday evening and during the night is here to soothe Sage back to sleep with a massage when she wakes up.

friend Alice, mac and cheese, and a good movie....

Sage continues to eat well, thanks to the local cooperative grocery store and some ingenuity. Risa went to Walmart and got a small cooler, along with a 'food mill' (the kind that can be used to grind up food for soft consistency). As Sage is on a 'soft mechanical' diet at present, the food has to be soft to swallow, while she gets used to eating again. Good food and good nutrition are so good for body, mind, soul and spirit.

Sage had a follow-up MRI Saturday afternoon, as it has been almost three weeks since the last one. She is also experiencing weakness in her left shoulder, so her miraculous medical team wants to look at that more closely and try to figure out what may be going on for Sage -whether it is just a residual effect of the last five weeks.

the hall outside the MRI

A big step forward also happened on Saturday afternoon when Sage returned from the MRI and had a trial run off the ventilator for an hour. It was time to make the move and try breathing on her own, along with providing her own airway pressure. Having a trial run on the the 't-piece' or CPAP (continuous positive airway pressure) means that Sage, for that hour, was not only generating her breaths but also the inhalation and exhalation of them. She was not getting support for airway pressure, and she did great!

Dave the Respiratory Therapist explains CPAP

With each day, Sage will have more time of these trials, building herself up to being off the ventilator completely. This is very significant, as the primary reason she continues to be in the ICU is due to ventilator support. Once out of the ICU, Sage will be on the 'floor' before leaving DHMC and heading south to Maryland.
Many thanks to all, both near and far, for continuing this journey with us and keeping the circle of love, light, warmth, care and positive energy heading north. Words are hard to express the gratitude.
Peace and blessings to you and your loved ones.

Day 42, late night update

The middle miles continue and Sage continues to keep a steady pace.
Last night was not as restful for Sage as the previous night, although being able to sleep 2-4 hours straight in the ICU is the equivalent of 6-8 hours on the 'outside'. She had an early morning nap and then pancakes for breakfast, followed by a late morning snack of macaroni and cheese.
Friends Alice and Risa were here today to keep company and humor alive and well in Room 12. It was a bit of a gray day with the leaves beginning to slowly show that turn of color. Sage got outside again! and walked again! from her room in the unit, past the main entrance to the parking lot.  Just no big deal at all....
Alice had to go back to Philadelphia and Risa served some very delicious dinner, straight from the local co-op. Mashed potatoes, sweet potatoes, mango smoothie drink. It all stayed down and Sage let it be known that it does beat hospital food!
A short and sweet message for now - that's all, sleep tight and rest well, world of friends and family. Sage is making huge progress and yet it may be difficult to understand how difficult it can be for Sage to sit, not speak and wonder about all of this, which is what is beginning to occur now.... her spirits remain positive and yet tiredness can set in, even there. Tired of not being able to talk or do anything (so it seems) without needing some assistance from someone, and yet ---
Sage brushes her teeth, puts on her own shoes and socks, gets herself into and out of the green chair, writes out her thoughts with her right hand,  mouths words for the older ones who still cannot read lips, eats, drinks, types, walks, sips water/juice/chocolate milk, laughs, listens. Her patience defies gravity in its own way, so please continue to send that loving energy and positivity to the north.
We thank you and appreciate you so much, for continuing to be with us and sending all your care and warmth. It makes a huge difference. Blessings on you and yours.

day 41 update

Greetings to all on this night that feels the lack of summer.
Darkness comes earlier and earlier and there is just that tinge of cool, bringing with it the autumn air.
One of the things that happens in the world of the ICU is that time takes on a whole different meaning, context and sense. Days pass and get absorbed by others; so even though the last post was from this Monday and read Day 37 (from the day the blog was started as such), it appears that July 29th, the day Sage arrived at DHMC, is indeed 41 days ago.
And these last few days have been remarkable! as Sage is making huge strides. It is a wonderful challenge to find the time to 'blog', as she is rounding so many corners and we wish to witness all of them - eating and walking, among others.
Today (Wednesday) Sage slept until 7 a.m. (how great to sleep so late!). While getting into the green chair this morning, the NG tube inadvertently and serendipitously got caught on something, and out it went...and out it still is, which means that Sage has been having food by mouth all day.
Pancakes. Orange juice. Macaroni and cheese. Tomato soup. Chocolate pudding. A banana. An ice cream sundae.
This is because yesterday (Tuesday) the speech and occupational therapists checked in with Sage about her swallowing capability and mechanism and cleared her to start with certain types of foods of soft consistency, and the one true thing she has been asking for since last week: water. Pure simple water has never tasted so good and been so appreciated.
And in regards to moving around, Sage is on her way. Without the use of a walker, Sage went today from her room, out the unit and down the hall. W-a-l-k-i-n-g, without holding onto anything. Granted, her nurse and the physical ad respiratory therapists were part of the posse, but she was holding onto no one. Incredible!
Sage continues to be remarkable: patient, unflinching, strong beyond words, thoughtful. She watched 'Benjamin Button' and 'The Bourne Ultimatum' today, got on Facebook, talked with Nathan (well he did most of the talking), got her hair washed and cut, communicated her needs by mouthing words and writing them out.
It is a miracle and a wonder to witness. Thanks and gratitude for being part of such a journey. Blessings to all.

warming up...

look ma, no hands...!

stretch those feet!

pancakes. food. wow.

walking in style....

just like that...

all in a day's work

go Sagey Bug!!

Day 37, late night

Dear Friends,
Our apologies for not being in touch for the past few days. Our goal for the weekend was, along with the rest of the country, to take a break from some of our labors, and to get Sophie and Sage to take a break as well—the successful result of which has meant silence on the blog. For that we apologize.
The past few days have been quiet, steady ones. Sage had the smaller trach put in on Friday morning, which went without a hitch. Hopefully that will bring her some relief from discomfort, and move her further along the road toward getting off the ventilator entirely. That afternoon she took another long walk around the ICU, and even tried to make a break out the doors to the ICU and for the elevators. Sage wants to get out of here (no offense to the wonderful caregivers at DHMC)–and we want to encourage her in that direction. Soon, soon, we hope...
The weekend also saw Sage taken entirely off her Fentanyl drip. This is a good thing, of course, but it is not an easy thing, as it means that Sage is left to struggle with her pain and discomfort, and the lonely anguish of not being able to speak, without the help of a synthetic opiate. Her strength, her courage, her will are… how to describe them? Profound. Awesome. "Epic," as the kids these days might say. I do not exaggerate. She does not complain. There is no whining. There is no self-pity. There is not even any anger. To look into her eyes—clear, enormous blue pools of compassion and desire—is to feel simultaneously refreshed and chastened. She makes jokes (we asked her the other day if there was anything we could bring her from "outside." "A burger and fries!" she mouthed emphatically). She thrills at the battle scenes in Lord of the Rings and giggles when we tease her about Vigo Mortenson. Bug is forged of flint and steel and fire. Our job now is to keep that fire inside her burning bright, to send her hope, to remind her that this will pass, that she will get out of here, that fate surely holds something great in store for her…
She has been struggling with a bit of nausea the past few days and has had trouble keeping her food down. This might be due to any number of things, so it is not something we are freaked out about, but we are certainly keeping our eye on it. Sophie asks in particular that The People of Good Jou-Jou send some good jou-jou this way with regard to food. It is heart-breaking to see Bug working so hard, to express hunger and thirst and appetite, and then to see her experience the nausea, and the frustration of nausea. So: People of Good Jou-Jou: Visualize food for bug! A healthy appetite! A happy belly! Second Helpings! Thank you!
The past few nights too have been a bit difficult for The Bug. That probably has a great deal to do with coming down off the fentanyl, but she has clearly been uncomfortable at night both physically and emotionally. A lot of shifting around, and a lot of anxiety. One can only imagine how difficult and how dark the nights must feel for her. Please everyone say a prayer for her in the evenings, send her sweet dreams and restful nights. She needs them, and I don't think it would be unfair to say that she has certainly earned them.
The days since you last heard from us have been lovely. The heat has broken, and on both Saturday and Sunday we took Bug outside for some sunshine and fresh air. On Sunday she walked with us out of the ICU, into the elvator, out the main entrance of the hospital, past the parking lot and around the grounds! That was huge and happy, for all of us. When she passed Timothy's car, she noticed the Maryland license plates and stopped. We flipped it open for her and suggested that maybe she'd like to practice her stick shift work...? She gave her nurses the eye and took a step in that direction with a big laugh. Humor is a great healer. It makes everyone feel better.
So of course does a two year old, and that was the other lovely bonus to getting Sage outside: She was able to spend a bit of time with her cousin Lucy, who obviously cannot go into Sage's room but blows get-well kisses on practically an hourly basis. With a cry of "Come on Sagey!," Lucy took it upon herself to lead Sage and "the entourage" around the grounds, and when Bug was ready for a little wheelchair time Lucy grabbed her hand and stationed herself there as Sage's very own personal escort. Big smiles all around, which we hope you will share when looking at the pictures below…
I write this next to Sage's bed. Beautiful Alice gave her a beauty treatment today, a trim and a manicure, and Nurse Jen gave her a bath and washed her hair, so Bug is fresh and clean and sleeping peacefully. As Lucy says, "Blessings for Sagey." And blessings and thanks for all of you. Sleep well, and please stay with us. We promise to do the same.