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