Thursday - September 20, 2007
Thursday, September 20, 2007
Day +72. Today is our lucky...well, maybe our transitional...or, let’s call it “our some-kind-of” day. We make the move from ICU back to 6West. It’s complicated, a bit, by a fever. Otherwise it’s a great step forward, and a reassuring confirmation of Jessie’s returning stability. Woo-hoo!
REGULAR CANNULA: Jessie tolerates the 4-litre high-flow nasal cannula settings overnight. Therefore, at morning surgical service rounds, the ICU team agrees to placing her on regular nasal cannula, with moist oxygen and not so much pressure. She handles the change without a budge in her oxygen saturation levels, her respirations, or her heartrate. She’s breathing without stress, and her lungs look better every day (they take chest x-rays every morning around 6:30am on ICU for many of their respiratory-involved patients).
FEVER! Oops. Jessie has a green light to make the move to 6West. But she spikes a fever around noon. Will it detain us? No! As the ICU fellow exclaims about the transplant unit, “They ‘do’ fevers better than we do.”
Bummer about the fever. It’s our first real fever in several weeks (aside from the post-surgical one 2 weeks ago). Please pray with us that it’s nothing significant...just a bump in the road without any culprits attached to it! They draw blood cultures from all of her lumens and venous access points, and send off samples of her urine, to test for bacterial infections. These blood cultures will take days to grow out, as you probably know by now. Meanwhile, the teams order broad-spectrum antibiotics to be resumed (she just finished a course a few days ago). She’s given some Tylenol, after the fever hits 38.8c (101.8f). And that’s all they can do for now.
She’s also having diahrrhea, so the two might go hand in hand. Ugh.
Then it’s time to return to 6West. Good-bye, ICU!
OKAY, SHE CAN GO: Her primary ICU nurse Lynn calmly organizes her for the trip. Lynn, like all of us, cannot quite believe that “the day” has come, and we’re actually moving off their service, back to the transplant unit. Lynn’s excited, but it’s bittersweet, since ICU nurses, much like ER nurses, don’t often see their patients again. They don’t have continuity for most of the acute cases that they handle — once children are well enough to leave the ICU, very few of them come back — even to say hello. We hope to give the nurses positive updates from time to time; they have helped bring Jessie safely to this moment of returning to 6West!
Nurse Lynn removes Jessie’s arterial line, disconnects IV’s, bundles up additional meds for handoff, brings her chart and patient card, and lots of information, for the handoff. The surgical and intensivist staffs make similar reports to the transplant fellows. Bye, room 719!
For Jessie, the move simply means wearing a mask while her bed is pushed through the halls. All of her pumps are hooked onto the bed, and she’s connected to a portable monitor and to an O2 tank for the brief journey between floors. She closes her eyes during the trip downstairs, and pulls the blankets up to her chin.
The ICU staff provides paper copies of their medical records to hand off to the transplant team. Mommy gets a copy of their records, too. ICU runs a different, incompatible charting system, so they cannot share files easily with other departments. At least not yet. The current CHAMPS (hospital computer system) system used elsewhere in the hospital is too cumbersome for their purposes, and caused slow-downs in care when it was tested, so it was deemed unsafe for their needs.
It will take hours for the transplant team to catch up, after being away from Jessie for 2 weeks, with her current management plan. They re-run tubing and lines to their own specifications. Change dressings. Change bedding. Assess her. Stop by to review information orally with mom. Help us carry bags out of storage into our new room. We’re ba-a-accck!
We’re in our home away from home, on 6West. Room 606. The corner room. They have been saving this room for several days, anticipating our return to their care.
Next step? Getting healthy enough to qualify for discharge.
UP NORTH: Today daddy’s working at home. Among other meetings, he connects with the technology committee in the Ipswich school district, and lays out the proposal for Jessie’s “virtual” classroom. They’re helping us find funding and equipment to create a portable “virtual” classroom solution, so that Jessie can be connected, regardless of her location. She has one laptop, and we need a second one, plus additional pieces of equipment, to set up a video and audio connection to the “Big 2-3” at Winthrop, where Jessie is assigned as a student. Meanwhile, Sarah has classes, then saxophone lessons, helps Jenny teach dance to younger students and then soccer practice. At home, daddy and Sarah enjoy one of Sarah's favorite dinners - steak tips and fried beets! Afterwards they sneak out to White Farms for some ice cream before the "season" ends.
PROMISE: It’s a bright September day, warm and clear and promising. We’re all busy. We’re all on the move. And the hope of leaving the hospital, moving to Ronald McDonald House, and eventually home to Ipswich...is one step closer to reality!