Monday - September 10, 2007

Monday, September 10, 2007

Day +62. We’ve made it through the weekend: lung biopsy and surgery, emergency abdominal surgery to save her spleen, stabilization of internal bleeding and other acute conditions, slow weaning off the endotracheal tube, control of vitals and dramatic fluid shifts including countless transfusions, and a more extended stay in ICU than originally expected. She’s achieving small milestones each day, and we’re content to go slowly. 

We expect to remain in ICU at least through the end of this week. After that, we’ll return to 6West for a careful recovery (2-3 weeks at least) and eventual discharge to outpatient care at Dana Farber’s Jimmy Fund Clinic and some time at the Ronald McDonald House.

SIGNS of GOOD PROGRESS: Her surgeon leaves the room, after examining her today, with a smile on his face for the first time since Friday morning. All through the weekend, Dr. Lillehei wore a frown and carried himself with an air of anxiety. Today he sees enough resolution to relax a little. He checks her belly again at the end of the day, grins and says, “THERE IS A GOD!” Yes, there is.

Jessie asks to read Charlie and the Great Glass Elevator in the middle of the night. When we finish the book, we stay awake and watch repeat episodes of Disney channel sitcoms and cartoons. She’s alert, communicative and responsive. She’s also very cooperative with the ICU staff, and quite trusting of them, which is rare for Jessie.

She can whisper hoarsely, and make herself understood. She assesses her body. ”Did they take out my central line?” (no) “Do I have an IV in my foot?” (yes) “Why does my belly hurt?” (they had to fix your spleen) “Do I have 2 tubes in my nose?” (yes, a cannula—at one point—and the N-G tube) “When was I allowed to talk?” (as soon as the tube came out on Sunday, although later she says she cannot remember the tube at all) “What is my ANC?” (over 4,000)

Conversation becomes more abstract. She pulls Roald Dahl’s book close to her range of vision, scrutinizing the whacky illustrations of Willy Wonka and the Oompa-Loompas. She reports bad dreams, once she’s wearing the BiPAP mask and trying to catch up on sleep, because she’s somewhat claustrophobic about masks. Dilaudid and Ativan ease her anxiety. 

When friend and pastor Rebecca Brown visits us in ICU, she asks Rebecca to sing, and especially wants “It’s a Wonderful World” by Louie Armstrong. All of the songs she asks for are about suns, sunshine, bright light, flowers and rainbows. How’s that for BRIGHT HAPPY POWER?

She sits up with daddy, when he visits, and has enough energy for blowing kisses and playing small jokes, such as gesturing mommy close to the bed and poking her when mommy isn’t expecting it! Daddy’s influence is always a little naughty.

REASSURING MEDICAL EVOLUTION: Chest x-rays show fluid in her lungs, which isn’t surprising, considering the volumes of fluids transfused and pumped in to stabilize her. Those fluids have been absorbed by all the tissues in her body, including her lungs. On the other hand, her lungs are more inflated, containing more oxygen, on both sides...clearly more expanded than Saturday or Sunday. Even the left lung is larger, though much smaller than the right one, since there’s fluid build-up inside the chest (outside the lung) on the left side. In other words, her lungs are looking better every day. (But we have lots of work ahead to fully and safely re-expand them to a more productive volume.)

Her belly’s girth is the same, but it’s softer. Evidently the internal abdominal oozing and collecting of blood (around the home of the spleen) has slowed, and the body is starting to absorb it again. Excessive fluids trapped inside her tissues will return to the normal channels of fluid handling, such as the veins, and will then be passed out of her body in various ways. For example, she’s peeing large quantities, which is one of their favorite measurements of her body’s vitality...lots of urine is a good thing.

She’s holding onto red blood after transfusions, drifting very slowly downward, which means she’s not bleeding excessively anymore. They have successfully transfused enough quantities of platelets to help her hold onto them for a while also (18 units on Saturday, continuous platelet IV drip on Sunday). Platelets also slow the bleeding and help her clot and stabilize.

CATCHING HER BREATH: Overnight, after removing the trach tube, Jessie tries breathing independently. That’s too extreme of a transition. 

We spend hours assessing whether she can breathe with only cannulas, which are plastic prongs connected to tubing that carry oxygen. We try both the regular and the high-powered ones, and even add blow-by oxygen. Nurses and respiratory therapists turn up the oxygen on both cannula models to maximum settings, but her O2 saturation levels remain below safety levels.

The team needs to see an oxygen saturation level of 94% or higher.  Without additional assistance, her respirations are too shallow, and she falls into the 88-91% O2 saturation range. It feels scary enough that she asks her nurse to hover close by, and keeps reporting that she’s “losing her breath.” She cannot relax enough to sleep, because her breaths become even more shallow and her O2 saturation levels drop. 

Hence, she needs to be more supported while she breathes, for a while longer. Jessie is placed on a BiPAP mask. The BiPAP is an oxygen mask that’s tightly sealed over her mouth and nose, held in place by straps across nose, forehead and around her head. Rich oxygen is forced through the tube, with an intensity comparable to the rush of air you’d feel if you stick your head out the window of a moving car. 

It’s attached to a ventilator. This machine is one step removed from the endotracheal tube and ventilator that she used all weekend to protect her airway and inflate her lungs and support her breathing. The mask doesn’t go into her airway, like the tube did, but it helps her breathe more deeply and powerfully. She doesn’t like the way it feels, but she relaxes enough to sleep during the day, after being awake all night with shallow respirations. 

Talking above the constant hiss of oxygen is a pain in the petutie. Jessie can’t easily communicate. We bend close to listen. She inhales between each word, expels air and tries to whisper as loudly as possible over the rush and roar of air. She tries over and over. Eventually we usually comprehend her questions or statements. It makes dialogue almost impossible. Ggggrrrrrr.

DADDY and SARAH: Daddy divides his time between a client in Dover, the hospital in Boston, and home in Ipswich. He picks up Sarah, who has had a busy day at school and then an afternoon in the company of a friend, and takes her to this week’s combined dance lessons: ballet and pointe. She’s literally on her toes today!