Saturday - September 22, 2007
Saturday, September 22, 2007
Day +74. In Ipswich, it’s the perfect September day...blue, crisp, a little hot in the sunshine, and ‘just right’ in the shade, with a playful breeze, and the first ribbons of autumnal crimson skimming the treeline. Although the river and ponds are running almost dry...you can see the rocky bottom of the Ipswich river, and Sally’s Pond is more like Sally’s Hole. Wow. And hey, they’re filming the newest Pink Panther movie on Argilla Road (Steve Martin has been sighted, apparently) in our town.
In Boston, the weather doesn’t matter, because Jessie lives in a HEPA-filtered room on a transplant unit, where the water and air are highly filtered, we can turn the heat up or down as we choose, the rooms are sanitized every day, staff enters her room in gown and gloves, and sunlight comes through a window, and never touches on her skin. Soon...soon that will change. We hope to be ready for discharge in a few more weeks. And then we’ll be making weather reports from Boston, too.
STATUS QUO: Hard to believe, just two nights out of ICU, but Jessie’ breathing on her own without oxygen support. They’re taking off the extra antibiotics from her fever, because her cultures are negative.
She’s being given more medications by mouth every day. She’ll continue to be treated for both fungal infections for months to come with Ambisome and Voriconazol and she’ll need the transplant medication Cyclosporin for a long time, too. Also blood pressure medications, stomach protectants, and electrolytes. Mostly taken orally. She’s on multiple blood pressure medications (Clonodine, Amlodapine and Menoxodil) to manage high blood pressures. She’s on supplements such as magnesium, but otherwise they’re giving her a chance to take in most of her nutrients by mouth (food and drink).
Today they stop the lasix, so she doesn’t have to pee all the time. She continues to receive platelets daily.
She’s more mobile, and for the few hours she’s awake today, she sits up to paint ceramic pots and to visit with Grandpa Ted, Paulette, sister Sarah, daddy and mommy. We all have a family dinner of Bertucci’s together - in the room. When she’s more quiet, we continue to read Roald Dahl together...she’s now reading James and the Giant Peach!
As staff come and go, the refrain is...”She looks great!” Yes, she does. What a difference two weeks can make.
GO, THUNDER! Sarah is tired from her sleepover...wait, rewind, pause...better call that a wake-over. She comes home after staying up until 2am, catches up on breakfast, and then we go to her soccer game. You know the playing site (Raymond Fields) is in a rural setting when horses are being groomed and saddled in the pasture beyond the field, and the owners’ black and white border collie patrols the edges of the field, herding the players and the ball (since there aren’t any sheep handy). Her team Ipswich Thunder ties Hamilton-Wenham, 1-1, with lots of action back and forth across the field. Run, Sarah, run! Not surprisingly, she’s exhausted during our trip in and out of Boston...spending a lot of time napping or reading. :-)
FAMILY: Grandpa Ted and Paulette have made the trip up from New Jersey to visit. They’ll spend a few nights at Ray and Margaret Morley’s Ipswich B&B, and then continue on. :-)
FRIENDS: Mommy makes the most of her visit in and out of Ipswich by saying hello to lots of friends. Walks, tea, chats on the street or in the parking lot or on the soccer field sidelines...it’s great to be home, even for 24 hours.
And we can see the evidence of a supportive community all around us...hosting Sarah, donating platelets or blood, walking or feeding the dog. Around the house, we witness your handiwork: crockpot on the table, flowers on the front steps, weeds pulled, new driveway dug up and filled with gravel, books and laundry packed to go, cards in the mailbox, a friend measuring the basement to help line and prevent bacteria and fungus from coming through the basement’s stone walls, and another good friend pulling up to the curb, ready to give a ride.
How can we ever name all the deeds and words that you have willingly offered and performed and spoken, in order to sustain us? How do we name you all? Or say thanks often enough? Perhaps we cannot. So we hope you know, that you are here...in our hearts and minds. Known. Acknowledged. Honored. Appreciated.