Thursday - September 06, 2007

Thursday, September 6, 2007

Day +58. Jessie’s ANC (absolute neutrophil count) rises to 3,780! Whew. We’re enjoying these juicy numbers. 

Today is filled with diagnostics, consults and team meetings to outline and prepare for tomorrow’s surgery. Mommy spends much of the day giving consents, asking questions, and comforting an anxious Jessie! Mommy and daddy make tough decisions about “go/no go” for the surgery. Jessie asks smart, insightful questions, even though she doesn’t want to hear the answers.

Please bear with us on Friday and this weekend, and read this site for updates. Don’t call for news. We won’t be allowed to take calls in surgery or ICU anyway, and we’ll have minimal opportunities to make contact, so we’ll use this site to report news. 

THANKS to DONORS: First things first. THANK YOU!!! Friends have made commitments to come and donate platelets. Thank you to those who can respond to our plea, and help in this shortage. 

Meanwhile, we have been assured that the hospital wasn’t “out” of platelets, just very down to critically low levels, so they were conserving. Contrary to the early morning reports, platelets were dedicated to surgical cases first, and then other “critical” status patients. All surgeries were able to be performed. The hospital uses safety parameters to help assure that they could continue to treat the most extremely platelet-needy patients (for perhaps a day or so) while they gain access to  emergency replacement supplies of platelets from external reserves (American Red Cross in Massachusetts or other states and/or other institutional blood banks). Meanwhile, they renew Children’s Hospital Boston’s own internal supplies of blood and platelets via scheduled donations.  

Again, your donations make the difference between life and death. As of this evening, supplies remain critically low, and the team “put on hold” the needed platelets to be used for Jessie’s lung surgery on Friday morning. Right now, every donor is saving a life. Of course, that is always true, but especially right now. 

For Jessie, someone saves her life about twice a day... because that’s how often she usually receives platelets. Today she’s receiving: red blood, platelets and immunoglobulin. She’ll need more tomorrow. So thank you for being donors, and saving Jessie’s life, or the life of another child just like her, over and over. 

IPSWICH: Although most of today’s journal is dedicated to details about tomorrow’s lung surgery, this family is living in two places, and daily life continues in Ipswich, despite the “drama” down in Boston. We WANT it to be this way. We want as whole and enriched a life for our family as possible, and right now that means keeping Sarah’s world as steady as possible, and supporting her as she continues with her education and extracurricular activities. Sarah goes to school. Later, daddy takes Sarah and a friend to soccer practice. It’s her first taste of the sports season - and they learn that, as when trying on any post seasonal equipment, that her cleats are too small. She is growing up. 

Sarah has asked questions about the surgery, and says, “Don’t tell me the details. Just tell me that she’ll be okay! Don’t tell me anything bad!” She wants to think positively about her sister and this situation, when she focuses on it. And often, she’s simply busy being an active, intelligent 13-year-old 8th grader. Which is exactly what we hope for her. On Friday night, she’ll have a sleepover with her friend Sidney. And early Saturday morning, she’ll be picked up by daddy to go to the season’s first soccer game. Go, Sarah, go! 

Daddy’s at work, at Rotary, and on job sites. He is partially focused on supporting friends who find themselves in an unexpected medical crisis, and we ask you to pray for Keith Harris in Massachusetts General Hospital’s CCU. Meanwhile, daddy fields several calls from mommy, discussing decisions, details and logistics about tomorrow’s lung surgery for Jessie, coming to consensus on some major decisions. Even though he’s up north, working and parenting Sarah, he’s actively involved in Jessie’s care, too. Talk about wearing lots of hats! Go, daddy, go! He’ll be in Boston tomorrow as we transition from surgery to ICU.

IS THERE ANYTHING GOOD ABOUT TODAY? OKAY, WE’LL FIND SOMETHING: Jessie has an echocardiogram using raspberry passion lotion! Cool. One of Jessie’s least favorite events is made a little more bearable because friend Dorothy Butcher is visiting, and because she gets to apply her own scented lotion, instead of the yucky ultrasound gel.

Nurse Caitlin promises to come in, on her day off on Friday, to help keep Jessie company as she goes down to surgery tomorrow morning. Yay, Caitlin! Thanks, more than we can say.

Sid Rao, the attending transplant doctor, says to mommy, “You and Chris and Jessie need to make whatever decision you’re comfortable with. Given the situation, you’re being very reasonable. Don’t feel pressured by tomorrow’s surgical schedule. If you want to wait, and have Rusty do the surgery, we can do that. We’ll do whatever you think is best for Jessie.” He can say this, since the situation isn’t emergent. But instead of complaining when we ask the team to consider this choice, he makes it entirely possible... although we opt to go ahead with surgery with “the lung guy” Dr. Lillehei tomorrow morning. We love this “putting the patient” first attitude, even when it might mean big headaches and logistical re-arrangements for them. Kudos to Sid.

Andy Koh joins the team meeting by conference call, and speaks up in favor of at least giving us a choice between the surgery tomorrow, or waiting for Rusty to do it. He is Jessie’s advocate, on the medical team, and he keeps his patient in the forefront, where she belongs, throughout this conversation.

HONEST TALK: We opt to go forward with the surgery tomorrow. Jessie’s primary surgeon Rusty has asked his colleague — who is “the lung guy” around  here — to perform the procedure. Dr. Lillehei comes by to answer mommy’s questions and to talk to Jessie. He’s very honest. 

Jessie’s face crumples and she starts weeping as he explains what he’s going to do. She’s old enough to understand the information, but it’s frightening, to say the least!

Really, do any of us understand what it’s like to be 9 years old and to be told that when you wake up from getting “sleepy medicine” tomorrow morning, you’ll have had either 3 small or 1 large incision(s) made along your side, through the intercostal muscle between your ribs? And that the surgeon, this doctor whom Jessie doesn’t remember, although he knows her, will insert a small “telescope” (thoroscope) into her chest to look inside. And make a plan. And through those incisions between her ribs, he will “take out a piece of her lung with an infection in it.” And that she’ll have a chest tube stitched into her side, and it will hurt. But that she will have access to pain medication to help her. And that she’ll be asleep when it’s all happening. 

Do we know what that’s like? Not most of us. Because most of us, hopefully, had childhoods that didn’t involve digesting and coping with such conversations. This might not be as bad as defining cancer to a newly diagnosed patient, or breaking the news of relapse to a child, but it’s a close second. 

Jessie doesn’t get to say YES or NO. No one is asking for her consent. She must undergo this surgery to address and positively identify the infection (or whatever it truly turns out to be). After Dr. Lillehei leaves us, she breaks down completely. She doesn’t want to do this. She’d like to refuse. Since she can’t, she does the next best thing... she falls asleep for a few hours, and then wakes up and eats pasta and watches endless hours of Disney’s Kim Possible! She turns down a walk in the garden, or more chapters from Charlie and the Great Glass Elevator. She’s mentally and emotionally exhausted by what’s coming.

WILL WE GET IMMEDIATE ANSWERS FROM THE SURGERY? Probably not. The portion of the lung that is removed will be sent out for different pathology and biopsy tests, ranging from stains viewed on slides to cultures grown in a lab. Once he has seen the lung tissue, Dr. Lillehei may be able to tell us something meaningful about it. But the tests to identify it will be viewed by a pathologist, grown out in a lab.

Regardless of the nature of the infected site, it will be removed from Jessie’s body. This gives her transplant team the opportunity to start effectively treating her entire body so that they’re not just maintaining the status quo, but actually eliminating the infectious organism from her body. Their choice of treatment, for now, will remain the same (antifungals). But the identification of the ball in the lung may change or clarify treatment recommendations.

WHAT WILL HAPPEN? The surgery is tomorrow, starting around 7:30am. Of course, she’s NPO (no food or drink) by midnight, so we plan to wake up at 11pm-ish for a midnight meal. She’ll receive transfusions between 3-6am, in readiness for surgery. Since her body wastes platelets due to her immune system’s “platelet refractory” condition, they’ll also run platelets continuously during the procedure itself.

Surgery may last between 2-6 hours. If Dr. Lillehei (the lung guy) can reach the site via the less invasive option of thoroscopy (3 small incisions to insert scope and surgical instruments), he hopes to minimize the procedure to this alternative. It will be the less painful procedure from which to recover. And if he cannot, then he’ll make a larger incision between the ribs, called a thorocotomy. 

Whatever incisions he makes, one of them will be large enough to remove the entire portion of the lung intact (so it doesn’t dissolve and spread more infection elsewhere). He actually thinks the infection site is not in the lowest lobe, but in the middle of the lefthand lung, where top and middle lobes are fused together into one upper lobe. He’s going after a midsection of her lung. And whatever else might seem infected, such as a chest wall that may be involved. 

Once the surgery is completed, her lung will be stapled closed to minimize leakage. The staples are permanent, but they won’t be visible from outside her body. And she’ll have a chest tube in place to help drain out any fluids or leaking air.

They will use general anesthesia, and a tube to keep her airway open and isolate one lung from the other, so that the infectious site doesn’t spread between the two lungs during the surgery. A team of nurses and anesthesiologists will be on hand, in addition to the surgical team, for this procedure. 

ICU NEXT: We know that tomorrow, after the surgery, she’ll be transported from surgery directly to ICU.  Mommy and daddy will move from the surgical waiting area to the ICU, as she’s waking up. Mommy and Jessie anticipate remaining in ICU at least 1-2 days.

She will have had an “intratracheal tube” (we may get some lingo wrong here) of some type to keep her airway open. It is possible she’ll still have a tube in place when she wakes up in ICU. She’s likely to have an arterial line, placed into a small wrist artery, to monitor blood pressures and oxygenation. She might have an intercostal catheter to deliver localized pain relief, such as Novocaine, nested in muscle layers near the immediate surgical site between her ribs. She will have a chest tube, exiting from one of the surgical sites between her ribs, to help drain fluids and oxygen from the chest area. It will be stitched into place. 

She may also have an OG (oxygen) or an NG (naso-gastric) tube to expedite the delivery of necessary fluids, oxygen, or meds. And probably a foley catheter to handle and measure urine. And perhaps more tubes and lines and insertion points. They’re not even sure that her 4 points of venous access (2 in her arm and 2 in her chest that go to her heart) will be sufficient to handle all the supporting meds and fluids, so they may place a peripheral IV in her hand or arm, as well. Aaarrrrghhh!

She’ll wake up with monitors and machines dinging and clicking and blowing and measuring and beeping all around her. Privacy won’t exist. Choices will be minimal... in ICU, patients are being stabilized from “critical” conditions, and there’s no nonsense about who is in charge and making decisions. Mommy and daddy can be in the room, and sleep nearby, but we cannot get into bed with her, and it’s not like the “homey” setting of 6West with all of our gear and comforts and snacks and toiletries and crafts and DVDs and... you get the idea. We’re making do with the bare minimums for a few days! 

Regardless of how much we prepare Jessie, waking up in ICU can be scary and disturbing. It will be a long few days. Your prayers are much-needed and very helpful.

OH, AND WE’RE MOVING ROOMS THIS WEEKEND: Yes, they’re starting renovations on 6West next week. They’ll close one of the two reverse air-flow rooms and convert it into a lead-lined treatment room for specialized therapy for neuroblastoma patients. That means that room 614, which is the sole remaining reverse air-flow room, must be opened up to patients with newer infectious disease concerns (such as new cases of zoster). While Jessie is on contact precautions and isolation, she doesn’t need reverse air-flow airborne precautions anymore, since her zoster has crusted over and is resolving. So we’re being moved to a different room on 6West, when one opens up. Therefore, we’re trying to pack up and organize and send home whatever isn’t essential. Friend Maureen will help mommy with this chore tomorrow. ** sigh **

PRAY: Please pray for us. We’re seeking stability. Healing. Resolution. The chance to recover and start to work, once more, toward the independence and stability required for discharge to life as an outpatient. And healthy lungs for Jessie, minus the infected portion.