Friday - September 21, 2007
Friday, September 21, 2007
Day...+73? We’re starting to get confused and lose track. But we confirm this tally on the tracking chart which we had used until we moved to ICU, and are now just filling in again a few weeks later.
Wow, that’s a nice feeling. Not that we take Jessie’s stability, several weeks beyond the actual transplant, for granted. We know she has many checkpoints and milestones ahead of her. And yet, we have accomplished so much in the past few months...that we can actually forget to fret over every day’s tally anymore.
In some ways, it feels as if we have all lived another lifetime, compressed into one spring and summer. Technically, we have. Sort of. Jessie’s life is genetically altered...she has a new, second life, in the form of donated marrow cells, living and growing inside her. And we’re all transformed, in many spiritual, emotional and mental ways, too. What journey doesn’t change us?
SWAP: Today holds many milestones, and a “shift change.” Mommy and daddy trade parental locations for the next 24 hours. After a morning at the office, daddy comes to the hospital in Boston. Mommy and daddy exchange a quick verbal report about schedules and essentials for both daughters. Then mommy hitches a ride to Ipswich with our friend Rebecca, in time to meet Sarah after school and spend some of the evening with her. Daddy remains in the company of Jessie in room 606 on the transplant unit.
WHAT COMES OUT? The past few days have been measured by what tubes, lines or bits of adhesive have been removed or peeled off of Jessie. Last night they took out the peripheral IV in Jessie’s right foot. Today is much the same. The nurse removes the peripheral IV in her left hand, leftover from its insertion during surgery 2 weeks ago, and used non-stop in ICU until they took her off the insulin drip. We take out her foley catheter, because she’s more awake, mobile, and able to get in and out of bed with less assistance (one adult is enough to help her) to use the commode more regularly.
Finally, in the early afternoon (1:15pm, to be precise) they let Jessie take off the nasal cannula...for good. SHE’S BREATHING ON HER OWN, WITHOUT ANY SUPPORT. If she can continue to breathe without any distress, she doesn’t need the enriched mix of oxygen that was being delivered by this nasal cannula (this level of respiratory assistance doesn’t reinflate lungs or have any added pressure to help her lungs with each breath...so she’s doing all the work anyway).
NUTRITION, BY MOUTH or BY TUBE: She’s not receiving IV nutrition anymore, and her blood sugars are under control, and she’s not receiving insulin. This is a good thing.
Ultimately, nutrition delivered intravenously is very hard on the organs, because the body isn’t designed to absorb and process nutrition this way. It can harm liver and kidney and other organs. So getting off IV nutrition is an important step toward independence, and becoming outpatients. Our bodies are designed to best handle food that goes through the gastrointestinal system (ie, food that enters the mouth, throat, esophasgus, stomach and then moves through the intestines and colon). That’s the opportunity that they’re currently offering to Jessie.
The team will give us one weekend to evaluate whether Jessie can eat enough food (including supplements) to sustain her body’s health and wellbeing. Otherwise they may consider a smaller feeding tube, inserted in her nose and down her throat, to provide liquified nutritional formulas. We hope that doesn’t happen; instead we’re encouraging her desire to eat large pasta meals from Bertucci’s. :-)
WHAT’S HER STATUS? We have been reminded to catch you up on a few other basics. The biopsy of her lung (which was the original purpose of the lung surgery 2 weeks ago) confirmed aspergillis. The transplant and infectious disease teams continue to fine-tune dosages of antifungal medications (Ambisome and Voriconazol), which she’ll continue to take for several months. Otherwise the treatment for the lung infection (since the infected node was removed), as well as the candida fungal infection on her spleen, remains unchanged.
Meanwhile, she’ll stay on antibiotics (Vancomycin and Zosyn) for one more day, as they wait to see if the cultures drawn yesterday, with her single fever spike, stay negative. For now, nothing’s growing, and that’s good.
On the transplant front, she’s off the filgrastim (GCSF) and her white blood cell count is remaining juicy. Her steroids are being tapered by 10% each week, and soon she’ll be off them entirely (unless she shows signs of graft-versus-host disease at any point). She remains on Cyclosporin, and will continue to take it for months to come. She’s also taking oral electrolyte boosters, such as magnesium. Slowly, we’re migrating all of her medications to oral doses, to help get her ready for outpatient life, without too many IV drugs to manage (she’ll probably be discharged with some IV medications to run each day).
TOMORROW: Sarah has a busy Friday night, including helping teach a younger students’ dance class and then attending her own jazz/hip-hop class at Ipswich Moving Company, followed by packing up for a sleepover at a friends’ house. She and mommy spend a few hours together, running errands. We’ll see each other again on Saturday, for Sarah’s soccer game and a family visit at the hospital. Daddy will spend Friday night on 6West, and return home on Saturday night. And guess who else will be in town? Grandpa Ted and Paulette are spending the weekend in Ipswich. So Saturday and Sunday will be busy family days! Woo-hoo.
OUT THE DOOR: Today’s meeting with the transplant team confirms our estimate that within a few weeks, Jessie will probably be stable enough to make the transition to outpatient status. She’s recovering by leaps and bounds. Once she’s stable enough, we’ll probably move into a transplant apartment at the Ronald McDonald House, because she’ll have several Jimmy Fund Clinic visits scheduled every week. Once the clinic visits are less frequent, we’ll hope to move north to Ipswich, and commute in and out of the city as needed.
But for now...we’re working on the steps that lead toward our exodus from 6West. Hard to imagine, huh?
But hey, hold that picture in your heads. A cart full of bags, being pushed toward the airlock doors. Books, clothes, computers, and other belongings, all packed up and on the move. And Jessie bundled up, probably under a few white blankets and wearing a mask, inside the big push cart, too. Leaving the floor. Waving to the staff. Hoping not to be back, unless future emergencies require short hospital stays (any fever will require immediate hospitalization on the transplant unit again).
BELIEVE! We are closer, every day. Closer to discharge. Closer to clinic. Closer to Ronald McDonald House. And eventually, closer to home.