Thursday - September 13, 2007
Thursday, September 13, 2007
Day +65. Slow healing, gradual progress, painful milestones. Oh, and then an acute emergency handled and resolved at the ICU bedside in a matter of moments! What’s a day in ICU without an emergency?!
GOOD STUFF: We have some bright moments to share from room 719. Jessie spends more time off the BiPAP mask and ventilator. We read some of Roald Dahl’s The Witches. Friend Jenny Carlson DeLinks visits (and brings chai tea for mommy). Jessie talks, and makes sense, because we have made some adjustments to sedation and pain management medications, working on a new combination that lets her stay comfortable, calm and more lucid. Lately she’s been hallucinating on her combination of high-dose Dilaudid, Ativan and other medications, and offering some cool commentary, such as...”How come I can’t have a monkey?” “I like to go to the museum with my friends. Can we go?” “Staircase!” “We have to find Jackson. I’m on the scent!”
CHEST TUBE OUT, CHEST TUBE IN: Jessie accomplishes a lot today, and every bit of it is a workout. She’s stable enough (as assessed in the morning) that they remove the chest tube which has been draining any extra fluid in the chest cavity around her left lung. Taking out a tube is uncomfortable, as they snip stitches, time the removal to the patient’s breathing, and pull it out quickly and expertly. A pressure dressing is quickly applied, and taped down, but the site is otherwise left open to heal. Ew. Ow.
Once the tube is out, Jessie can feel the difference. In a good way. But it also makes another sore spot, which isn’t so wonderful.
Later in the day, she has a sudden emergency. They follow up the chest tube removal with an x-ray a few hours later. Sure enough, her chest has filled with air (a tiny leak in the lung) and collapsed the left lung. This is labeled an acute pneumothorax. Acute is a cool word for an emergency or a “big deal” that needs urgent response, even in the ICU world.
As quickly as they see the acute pneumothorax (see how we throw around our new terminology?), a surgical fellow and an ICU fellow are at the bedside, along with a respiratory therapist and two nurses (and mommy) inserting a new smaller tube — called a pigtail —between her ribs to evacuate the air from the chest cavity (not the lung of course). This tube will probably stay in place a few days for safety purposes. Mommy wears a mask, tears things open, restrains one of Jessie’s busily wandering hands (they go exploring even when she’s received emergency anesthesia), finds supplies, and offers some help. And some jokes, too.
An immediate follow-up x-ray (the third of the day) shows no air in the chest area and that the left lung has re-inflated back to its pre-pneumothorax state. Much smaller than the right one, but certainly regaining most of the volume it showed this morning, before they pulled the chest tube.
ONE MORE INSULT TO HER BODY: Another chest tube. Huh. Her body has many small injuries or insults, not to mention the larger ones made externally and internally by surgery. For medical access, management and monitoring purposes, she’s just covered in tape, incisions, insertion and exit sites, needle-less IV’s, gauze and tegaderm and duoderm dressings, adhesives, other tubes, monitor leads, mask and tubing, catheters, IV boards, fabric restraints, and lots of other bits and pieces (that’s a technical term).
THE KID DEFIES THE DESCRIPTION: Immediately after discovering the emergent condition, the team rushes into our room to check on Jessie’s respiratory status, expecting to see sure signs of a crashing pair of lungs.
But no one told us that Jessie was supposed to be experiencing an emergency this afternoon. We didn’t get the instructions. So we didn’t do it right.
Instead of panicking, and holding her still and holding our own breath for every one of hers, we went forward with the day’s original plan. We had her spend some extended time in two “sprints” off the BiPAP oxygen mask and ventilator. She handled 15 minutes this morning, and earned high honors by coping well with 25 minutes this afternoon.
What do we use to measure success? High oxygen saturation levels (98-100%), measured respirations (not quick shallow ineffective breaths), generally good stamina during and afterward...that sort of thing.
Jessie can talk through both of the day’s sprints. When given the chance to speak, her only question is...”When can I take out the tube in my nose?” And later, “I love you!” to mommy and daddy and Sarah.
She’s sleepy through both, and tries to get close enough to the N-G tube and other dressings on her face to explore them, and maybe tug at them. But she can converse, she cooperates, and she clearly isn’t in distress. Just some pain, since we adjusted her pain medications to lower dosages today (they were a bit high and making her sort of loopy).
So when the team comes into the room, we have just put her back on the BiPAP mask and ventilator, without any hint that while she was off this respiratory support device, her lung was collapsed the entire time. Hah.
They forgot to tell us what we were supposed to do. So instead, we assumed her lung was healthier than yesterday, and treated her that way. And look what happened? We BELIEVED in Jessie and her lung. And they defied expectations or explanations. She functioned as if both lungs were open and working.
And so they will. After the intervention to get rid of the air in her chest cavity, and as her lung re-inflates, she remains on the same BiPAP settings that we started with earlier in the day (we’re weaning the oxygen percentages now, and leaving the pressure settings alone for a bit).
Go, lung, go! Go, Jessie, go!
ONE STRESS TOO MANY: Meanwhile, Wednesday night and Thursday morning...leading up to this eventful day...were long for different reasons. A sleepless night was partially induced by conflict with a caregiver. Aaaarrrgggghhhhh.
As excellent as most staff members are, sometimes we come across personality conflicts with medical staff that make life hard in the hospital. Sometimes, we can heal such differences. When it’s safe, we try to. But in an ICU, who has time to worry about interpersonal dynamics and personality conflicts? When it interferes with a parent making sound medical decisions in cooperation with the medical team, it’s beyond annoying. It can be compromising.
Anyway, this is the polite version of our feelings about working through a difficult night. So there. Phhhttttt.
DADDY and SARAH: It is comforting for life to keep its rhythm.
Sarah attends school. She’s taking Spanish for the first time. And she’s in her favorite “special” class, Tech Ed (hands-on science and design application). Plus math and language arts and science (focus on earth and space this year). Today she has saxophone lessons with her teacher Mike Tucker after school, and later in the day she’s got soccer practice. She also tries out for the Select Chorus, and she’s playing intramural tennis a few days a week. Whew...is there any time leftover?
Daddy gets some time with clients, some time with Rotary, and the chance to celebrate an open house with friends and colleagues. Remember, he’s an architect. Oh, and he has a few projects brewing to get ready for our eventual home-coming to Ipswich...because yes, we will someday get home again. :-)
GETTING READY: You know how they say it takes a village to raise a child? Well, in Jessie and Sarah’s case, it seems our village is helping us raise them!
Like always, friends offer Sarah companionship. Many friends help daddy fill in the hours and after-school support that a second parent would otherwise cover (that’s mom, who’s in Boston with Jessie instead).
Friends are helping in so many projects around the house, from preparing a more accessible driveway to helping make the basement contagion-free (eliminating sources of fungal contamination through lining) and prepping the air filtration, insulation, and heating-ventilation system for the house to make it energy efficient and HEPA-filtered. These are big projects, and people are donating their hands and time and talent to these endeavors. Each of them, in different ways, makes our c. 1770 house, which was not originally expected to be the home of a transplant patient, safer and better-equipped for Jessie’s eventual return to Ipswich.
And of course, we have the virtual classroom project also in the works...equipping both classroom and home (with portable capabilities for clinic, hospital and Ronald McDonald House) to create a long-distance connection with Jessie’s teachers and peers in the “big 2-3” at Winthrop Elementary.
Thank you to everyone who is making the preparations for our life at home possible. And for making life NOW, both in Ipswich and the hospital, possible, too.
ALWAYS CONNECTING: As ever, we connect through the day. A bag from Ipswich, with clean laundry washed and folded with lots of love by daddy, finds its way to room 719 at Children's Hospital Boston’s ICU unit via friend Jenny. Emails cross the distance. Cell phone calls. Text messages. Daddy and Sarah’s virtual hugs. Mommy’s love. Jessie’s “I love you!” called out when she’s off the mask for a few minutes today. We hear each other. We know...even when we cannot see each other...that we are bound together. We BELIEVE!