Friday - September 28, 2007
Friday, September 28, 2007
Day +80. Holding steady. Still getting closer to discharge from the stem cell transplant unit, despite fevers and localized infection. The earliest chance for discharge? Probably about 12-14 days from now.
If you don’t want lots of meticulous detail about Jessie’s status, but you want to know why we believe in large and small miracles, and continue to ask you to BELIEVE with us, you’re welcome to skip down to the last paragraph, where we share some encouraging news with you...and a family’s plea for you to “keep doing what you’re doing.”
INFECTIOUS COMPLICATIONS SLOWING US DOWN, BUT NOT DANGEROUS: Yes, her low-level fevers continue most days. But both transplant and infectious disease teams are continuing the antibiotic course (Zosyn, Vancomycin and Flagyl) and working under the assumption that they have identified potential sources of the infection: pockets of excess fluid around outside of heart (pericardial effusion...not very likely), lungs (pleural effusion...probable), or in her abdominal cavity (highly likely). Perhaps also the enflamed colon and bowel tissues (highly likely).
Since no bacterial or fungal or viral organisms have seeped into the bloodstream or elsewhere, it is considered a localized infection, and the fevers are probably a sign that her body is mounting its own defense against the infection. She’s well covered by medications, and there’s no more intervention that they can recommend at this time.
So her situation is considered watch-and-wait, and see if she can effectively fight the infection with the protection of the antibiotics. This is relatively good news.
They continue the plan to re-assess by CT scan next week, and check the progress of the fluids and inflammation. They wouldn’t order additional diagnostics any earlier, unless her situation changed dramatically.
By the way, they have taken echocardiograms every day for 3 days, to be sure the pericardial effusion wasn’t growing dangerously large. It remains moderate in size, and isn’t affecting cardiac function, and will probably re-absorb on its own over time.
LOWERED OXYGEN SATURATION LEVELS: We’re keeping an eye on O2 saturation levels that drift downward over the past 24 hours, sometimes hovering around 91-93% when she’s resting. The probable cause? Her sleeping position causes the excess fluid in her diaphragm to push up and compress her lungs, making her breaths shallower and less effective. When she’s examined, the lungs sounds clear and healthy, and her O2 saturation levels rise back to 97-100% when she sits up or stands, so it seems to be affected by bodily position.
Unfortunately, this sometimes means that we have to wake her up and make her move around, so that she’s not squashing her lungs so much when she’s sleeping. Waking her up isn’t ever popular. Especially since, as you’ll read below, she’s sleep-deprived right now.
MOODY: As for her spirits, they are...spunky? Cranky? Mercurial?
Well, who wouldn’t be? Different circumstances have caused 3 nights with virtually no long periods of sleep, and days are too busy with diagnostics and exams and plain old wakefulness for her to catch up. In fact, we work out a deal with the team to draw labs (they check her CBC twice daily) at 6pm and 6am, so she can sleep, and if they need to transfuse her, they do it in the daytime, or the evening before she goes to sleep...we’ll see if this plan works out as cleanly as it appears on paper (hah).
Back to moods. By today, she’s had enough handling...day or night. She yanks monitor leads off her body. Blocks any helpful hands that hover too close or offer to move blankets or assist her. Peels off the oxygen saturation monitor with a mighty shrug and emphatic toss whenever she gets permission to remove it.
She snaps at staff, tutor, friends and mommy alike, “I hate you! Get away from me! Give me some space! Don’t touch me! Get out of here! Leave me alone! You idiot!” Shows signs of a returning sense of humor, with occasional jokes. Then gets mad if anyone starts to tease or be too playful in her vicinity...she wants us to take every situation seriously, never with levity.
She has energy for tutoring, though she’s cranky with Michelle, too. We read some Brainquest questions, listen to Inkheart, and play a game together. Later in the day, friend Maureen visits, and Jessie sits up for a Friday-night competitive game of “Sorry!”
Dr. Lehmann, transplant director, wisely observes that patients who have been in the transplant unit a long time become intolerant of regular routines. Why? Because they feel better and notice staff interventions more and consider them more invasive. This seems to characterize Jessie’s mood. She’s just weary of being hospitalized, tired of her body being available for “public access” and ready to take charge again. In other words, her “attitude” is a sign of recovery and returning health. :-)
STAMINA: Physically, she’s making measurable progress every day.
You have to remember that two weeks ago, she showed signs of strength by opening her eyes for the first time in 5 days...she coped by keeping them closed for the first 5 days that she wore the BiPAP oxygen mask and lived on the ventilator in ICU...digging deep, turning inward, sort of “going away” someplace inside herself...or maybe outside herself. She “came back” to us two weeks ago, when she opened her eyes and maintained eye contact and stayed visually connected to the events in the room itself.
Now...now she’s working on walking without holding mommy’s hand. Climbing in and out of bed. Her biggest challenge is a lack of both lower back and abdominal strength. She cannot sit down or sit up from a supine position unless someone pulls her up...those muscles are in deepest need of recovery and patience (seeing as they were sliced and damaged during the emergency surgery). Yesterday evening, Jessie tossed a Nerf basketball twice into a hoop down in the garden, while standing on her own, before getting too wobbly to continue standing. Go, Jessie, go!
Physical therapists in the hospital push her to practice range of motion with hands, arms, shoulders, feet and legs. They help her exercise smaller, less used muscles that need to be stretched and warmed up. Behind Jessie’s back...as she walks in a huff (shuffling and wobbling) across the room, the therapist is quite impressed with both her feistiness and her returning strength. Jessie won’t tolerate any praise...she just wants the therapist to go away. So we quietly acknowledge her accomplishments to each other, and let Jessie scowl and ask the therapist to “just leave!”
OTHER STUFF: As for other basics? She continues to need platelets almost daily. 4 units at a minimum. Red blood 1-2 times a week...she cannot make enough of her own red blood cells to replenish those that her body uses up.
She’s eating and drinking enough to satisfy the team that they don’t need to put a tube in her nose and feed her liquid formulas as supplements. She needs lots of electrolyte replacements: magnesium, calcium, phosphorus and potassium. Some of this she takes orally, some of it is delivered as part of her regular enriched hourly IV fluids, some of it intravenously in large-volume bolus doses when she drops dangerously low.
She’s taking several medications orally, including antifungal Voriconazol and transplant medication Cyclosporin, which continues to keep her ready for discharge (since that’s one of the criteria). She’s almost done with IV steroids...one more week to go!
They’re weaning her reliance on pain medication. She receives a long-lasting dose of methadone every 6 hours, but the dose itself is being tapered every few days, to help her body adjust to lowered amounts of narcotics in her bloodstream.
FRIDAY NIGHT FOOTBALL: Up North, it’s Friday night high school football season. After a busy day at middle school, followed by dance class at Ipswich Moving Company, Sarah and some friends go to the Ipswich-Triton football game! She’ll sleep over at a friend’s house. Tomorrow is filled with traveling soccer game, and plans to go to the Topsfield County Fair.
Daddy spends his Friday at the office, working on architectural projects and business administration among the partners, then shuttles Sarah from dance class to a friend’s house, then catches up on personal and household projects. Tomorrow, after being a “soccer dad” in the morning, he’ll come to the hospital and visit the other half of his family for a few hours. Tonight, he has some time to himself...what will he do? Anyone want to lay bets? Probably the winner will be the person who wagers that he’s going to bed early and sleep. :-)
BELIEVE: We’ll say it over and over. Your positive thoughts, wishes, mantras, energy, prayers and visualizations are working...for Jessie and others.
One little girl’s mother writes today...
“I am not even sure what to make of this news. Mary's AFP is down to 186 from 210. it isn't enough to be excited about it but it is definitely better than 1860 - so I won't complain. Trust me. ...For now we will just take the news in stride and continue making our plan. ...Mary's NP told me to keep praying or doing whatever it is we are doing b/c maybe it is working! So keep up the good thoughts and the prayers! :)”
A few days ago, they were meeting with the team to discuss pre-palliative options, debating the choice of whether to go forward with any form of therapy anymore, or simply strive for quality of life. She is one of the children for whom we continue to ask you to pray.
ESPECIALLY KEEP THESE CHILDREN IN MIND: Grace, Lia, Christine, Ethan, Mary, Jenna, Abigail, Matthew, Max, Ryan, and Leo.