Tuesday - September 18, 2007
Tuesday, September 18, 2007
Day +70. Transitions are exciting, but rugged, too. Ouch. Ow. Breathe-breathe-breathe.
WHY ARE WE STILL IN ICU? Jessie goes for a full 24 hours off the BiPAP mask and ventilator, starting at 6:45am, just before the day shift starts. They’re seeing if she can cope with only the high-flow nasal cannula. She’s on a mix of 40% oxygen, and they wean the flow setting from 7 down to 6, then down to 5 by Wednesday morning. Ultimately, they’re aiming for a setting of 3, and then she can migrate to the regular nasal cannula, which would prepare her for a transition downstairs to 6West. For now, respiratory issues must be managed more closely than the transplant team is staffed and equipped to do, so ICU is the safest place to be.
Meanwhile, management of blood sugar with an insulin drip is the other issue which must be resolved in the ICU setting before she can move back to care of the stem cell transplant unit.
WHAT’S A KID LIKE HER DOING IN ICU? She’s perky today, without the roar and hiss of oxygen and the barrier of a mask across forehead, nose, mouth and chin, all strapped around her head, to slow her down. She reads with her tutor Michelle...in fact, she starts asking for her tutor hours before Michelle is scheduled to arrive, because she’s “bored.” Active, bored children are a rare sight on ICU!
Hah. That’s Jessie...setting new standards on ICU. She’s sitting up in bed more. Drawing, telling herself stories. Doing craft projects. Playing games with her nurses, if she can get them to hold still long enough to join in (oh, wait, they have to work!).
UP and ABOUT, KINDA: Her appendicostomy flush (saline run through gravity drip bag into a foley catheter into her biological duct into the top of her colon) washes out extra “stuff” for the first time. Why is this important? It tells us that her colon is working, as is the rest of her GI tract!
The transition in and out of bed is slightly less complicated, since they removed her N-G tube and chest tube yesterday. Nevertheless, it takes 3 adults to help her in and out of bed. Today she takes some of her weight on her legs and feet, standing up, between transitions on and off the commode, leaning on a nurse! Go, legs, go! Go, Jessie, go! Sitting up, out of the bed, exhausts her. She naps for several hours in the afternoon, once she’s back in bed again.
SOUNDS GOOD, BUT...They’re letting her try “real foods,” but although the IDEA of food is enticing, the smell is enough to make her feel sick to her stomach. She declines spaghetti, after it comes into the room with its warm smelly red sauce.
IV ACCESS, TO GIVE or NOT TO GIVE: Extra points of access to her bloodstream, in the form of peripheral IV’s in hand and foot, and the midline PICC lines in her right arm, are now conking out. Failing. Darn. Gggrrrrr.
On the night shift, we must quickly problem-solve too many IV medications without enough ways to get them into her body on time. The night-time ICU team agrees to migrate her to an oral medication, to help balance medications for one shift. In the morning, we may revisit this plan...switch her to more oral medications, or place a new point of access...peripheral IV or new PICC?
PAIN! Through the night, we transition her off the continuous dose of the narcotic Dilaudid, and switch her over to longer-lasting doses of Methadone. This will — according to plan — both manage pain from her surgical sites, and prepare her for the long work of slowly tapering off a narcotic. Plans sounds good in theory, but sometimes in practice, they require revision.
The transition overnight is very tough...she has breakthrough pain several times during the night...the worst she’s experienced since surgery 1-1/2 weeks ago! She ends up receiving several bolus doses of Dilaudid, and they give her next dose of Methadone early to resolve it.
And of course, we must start asking ourselves, is the pain just from a change in medications? Or is something else going on? We take extra X-rays, make a few rounds of bedside exams...we will watch and wait. Hopefully, this extremity of discomfort is just a matter of finding the right dose of methadone to take over the pain management stability that we had achieved with the narcotic Dilaudid.
For once, the pain management team earns their shorter title...just plain old “pain team.” Sorry, can’t help it!
At least the nighttime staff is familiar to us...former oncology staff member who has transitioned to pain management. She stays by Jessie’s bed for quite a while, helping assess and monitor. The issue will be taken up on Wednesday’s dayshift. But...OW-OW-OW.
IPSWICH: Of course, daddy and Sarah are busily managing the “in’s and out’s” of life and school and work in Ipswich and the North Shore. Many friends are helping these days, either with dog care or packages delivered to the city or companionship for Sarah or occasional meals or other hands-on ways of sustaining us. And we thank all of you.
Today, friends and neighbors keep Sarah company after school. She films a project, with two classmates (and neighbors who fill in), for Tech Ed. They have scripted it, and now they’ll film and act in it. But they need some adult help...oh, to drive a car, for instance. And we have neighbors who willingly participate. And supervise three creative middle students at work. :-)
Daddy and Sarah spend the remainder of the day together. And of course, daddy is scheduling in as much work as he possibly can, since he is so often called away for family matters....parenting a busy student like Sarah and tag-teaming with mommy and Jessie in ICU!
As usual, we exchange quick phone calls, text messages or emails to stay connected. Life continues, in both hospital and home. :-)