Saturday - September 15, 2007
Saturday, September 15, 2007
Day +67. Daddy spends an extra night and day in Boston, so mommy can recuperate enough in Ipswich to be return to ICU/BMT duty again after the weekend. The extra time off is great for mommy and Sarah, who haven’t seen each other in weeks. And it’s wonderful for Jessie to spend extended time with daddy...he coaxes her to communicate more.
WALKING for JESSIE, MATT and KASSIE and OTHERS LIKE THEM: Friends from Ipswich are walking for two former pediatric cancer patients: Matt and Kassie. Their friends and family members are walking either 26 or 13 miles. The youthful cancer survivors will be among those crossing the finish line in Copley Square in Boston (they’ll start in Hopkinton or Wellesley). Cheer for the Jernegan and Ashley families, and everyone walking with them or supporting them.
And please, cheer for the MEDIA MILERS team who is also walking for Jessie tomorrow (Sunday) along the Boston Marathon route. They will see Jessie’s smiling face at mile six and at the finish line, on a poster. It may be the only external sign of her presence there...but our entire family will be cheering the Media Milers on in spirit, for their commitment to this cause, and to Jessie...for whom they have walked a few years now.
All these teams and individuals are raising funds and awareness for Dana Farber’s Jimmy Fund. And we ask you to hold them in your heart and prayers, too, as they become part of “ONE DAY ONE MISSION ONE WALK.”
IN ROOM 719, IT’S MOSTLY ABOUT LUNGS and ABDOMINAL RECOVERY: Every day brings improvements. Our first goal, of course, is to be stable enough to move out of ICU back to 6West. Prior to surgery, Jessie had reached a point of stability that was discharge-quality physical wellness. Our second goal is to be stable enough, in coming weeks, to transition to outpatient post-transplant management of her condition. We hope, perhaps in about a month, to move to the Ronald McDonald house as a “home away from home” and the Jimmy Fund Clinic for medical care.
Right now we are focusing on immediate accomplishments. We measure these ICU days in breaths on and off the ventilator. In eyes open or closed. In efforts to communicate, either in loud whispers through the mask or by spelling out words with the alphabet. In verticality, sitting up in bed or out of it. In time without sedation, either wide awake or sleeping without chemically-induced grogginess. In adhesive left on the skin, and adhesive peeled off. In units of platelets, and medications tapered off.
The team dropped the pressure of the BiPAP support down to 15/5 on Friday, and lowers it even more today (12/5). The oxygen percentage is lowered significantly also. Jessie’s doing most of the work with her own lungs, and less mechanical assistance. On the other hand, she’s exhausted due to lack of sleep and just healing altogether, and can only handle one 100 minute sprint (using nasal cannula) off the BiPAP mask and machine.
The team is also pushing her to challenge her body in other important ways. Aside from physical therapy, they are setting simple, but exhausting physical goals. Today she gets out of the bed for the first time in 8 days and sits up in a chair for a few hours. Her eyes are closed, even when the television’s on. She listens more than watches.
Sitting up opens up and uses her lungs, and starts bodily systems moving and functioning, that slow down or stop altogether in a bed-ridden state. For instance, they also want to wake up her gastro-intestinal tract. Based on an x-ray from Friday, they make determinations about the amount of the appendicostomy irrigation that daddy and Jessie should attempt today (we started this procedure yesterday, but didn’t get results). She sits on a bedside commode, after being helped in and out of the bed by two nurses. She listens to several chapters of a Roald Dahl book, read by daddy. They finish "The Witches" today. in the evening, they start - and finish - another one: "The Giraffe, The Pely and Me."
It’s no small feat for Jessie to be moved out of the bed into any other situation...chair or commode. She’s using the BiPAP mask and ventilator, she’s trailing a chest tube attached to a collection unit (put to water seal as opposed to suction today) and foley catheter draining into a urine receptacle. She’s receiving IV nutrition and medications through several intravenous pumps, she’s got an N-G tube attached to suction, and she’s wearing leads, O2 saturation band and blood pressure cuff connected to a vital-signs monitor.
All those attachments must somehow be organized to move with her when she’s out of her bed. And they do, as she accomplishes the new challenges that the team sets before her.
WHAT WE DO WITH OUR MOTHER-DAUGHTER DAY: There’s something comforting about falling into familiar rhythms. Of slipping back into the “before relapse, before transplant” routines of home. For one day, mommy and Sarah feel as if we’re just doing what we “always do” together, every weekend, because there’s nothing more complicated or demanding than a soccer game, some homework and laundry, and taking care of the dog.
Frequent text messages on cell phones, and occasional calls into the ICU, remind us that for every length Sarah’s team runs on the soccer field, Jessie and daddy are measuring their wins in moments out of a hospital bed or off a ventilator. And we realize...life isn’t ever simple anymore. But that doesn’t make the game less important, or the day’s chores and joys less essential. It just makes them more...special? More meaningful? Brings them into focus, because every day outside the hospital, every day at home, every celebration of the ability to run the length of a field or just to talk to friends on the sidelines...those all feel like freedoms and privileges. We savor them. Rain or sun.
Her soccer team, the Ipswich Thunder, wins 1-0 in a close and exciting game that has parents cheering, coaches shouting, the ref making lots of calls, and the girls darting from one end of the field to the other, as play spans the length of the field! By the time the game ends, the skies are clearing and the day shines with promise. Go, Sarah, go! Go, Thunder, go!
Sarah spends a few hours at a neighbor’s birthday party, and mommy gets her hair cut (oh, hallelujah!). We enjoy a picnic dinner in our own parlor, watching a video and eating homemade chicken soup ala Martha Mauser! Mmmm, healthy, healing and delicious! We hang out together.
ALTERNATIVES: Daddy, who is becoming our family’s expert on homeopathic alternatives to traditional western medicine, gives mommy a list of natural ingredients to use today to help feel better...garlic, licorice, echinacea, probiotics (such as acidophilus) and zinc. Add hot tea, steamy baths, and saline rinses to a few nights’ sleep, and mommy feels like a new gal! Thanks, daddy.
If only we could affect cancer so immediately. But we hope that the habits we have at home, from eating locally-grown or organic foods to using non-toxic household products and other such lifestyle choices, will help to support the bodies of every person in our family, including Jessie’s. We cannot control all environmental factors, but we try to influence those about which we have a choice. And the more we learn, the more we realize how many choices each of us can make...from recycling to walking instead of driving, or drinking water instead of soda, or whatever it is possible to do, on a personal level, to take care of our own bodies and to be responsible citizens in this world, honoring and supporting eco-friendly ways of living.