Friday - September 14, 2007
Friday, September 14, 2007
Day +66. Seems like a year has come and gone since last Friday! Shift change among the transplant team, and for mommy and daddy, too. Like always, the only person who doesn’t ever get a break is Jessie. Okay, well, Jessie gets some more time off her BiPAP oxygen mask and ventilator, so that’s something...
DON’T LOSE SIGHT of WHY WE’RE HERE: Of course, it’s almost easy to let transplant conversation slip into the background with all of these acute events of the past 7 days. And the great thing is...it can. For now, she’s stable on the transplant side.
Engraftment is confirmed; her new marrow has taken root. Her white blood cells are skyrocketing, even without the GCSF to stimulate them: ANC over 5,000 this week! She’s tapering off many medications, including the medications and the steroids. Cyclosporin and some others are long-term components of her regimen, to help prevent graft-versus-host (which is a long-term challenge...it can happen any time in the next year or beyond, and be quite dangerous). Blood pressure meds remain part of the picture. Nutrition and lipids continue by IV. Transfusions occur: platelets daily (between 8-14 units), IVIG twice a week, red blood once or twice a week.
HIGHS, WITHOUT LOWS: Jessie completes two “sprints” of extended time off the BiPAP today. In the morning, she’s off, using high-flow nasal cannula for oxygen support, for 45 minutes. In the afternoon, she manages 1 hour and 10 minutes, again with oxygen support. Go, lungs, go!
Her lungs are both fully inflated. The right is stronger. Clearly it has been doing all the work for one week. The left lung has diminished sounds and function, but is resolving day by day.
Between sprints, Jessie remains awake. In fact, she’s awake all day. Yesterday, 15 minutes off the BiPAP and ventilator was followed by 4 hours of nap. Who knows how long she might have napped after her 20-minute interlude...that was followed by the pneumothorax, emergency sedation and urgent bedside surgical intervention instead. Enough to make you tired, right? Today...she stays awake. Her stamina is returning with impressive bounds every day...though we have days to go before she’s transitioned off the BiPAP machine to simpler oxygen support, such as the nasal cannula.
PRAYERS: Please pray for all children in ICU tonight and this weekend. Please pray for transplant and relapsed patients such as Jenna, Ali, Abigail, Ethan, Max, Gus, Matt, Mary, Lia, Leo and Grace. Please hold our friend Keith in your prayers.
JIGGITY-JIG: It’s Friday night. The weekend is here. Pizza arrives on 6North/6West resource room, kindly donated by a cancer family and their friends. It brings patients and families out of their rooms to find some community. Daddy enjoys a few slices, and a chance to see the oncology and transplant staff. He spends time in the ICU helping Jessie on and off the BiPAP and ventilator, and then spelling out words with the alphabet board (lots of “I love you’s” going back and forth). Plus a few dressing changes of central line and PICC lines and an x-ray of her colon (to see if the bowel is beginning to move). Mmmmmm, fun. Mommy goes home to spend a night sleeping and catching up, and she’ll spend Saturday with Sarah. Sarah spends the day at school, the afternoon at jazz-hip-hop, and the night at a sleepover with a friend.
CHEER on the MEDIA MILERS: We ask that you also cheer for and think of our Jimmy Fund Boston Marathon Walk team this weekend.