Monday - September 17, 2007
Monday, September 17, 2007
Day +69. This may be a lucky number for us! We’re a few days away from transition to 6West!
Most importantly, Jessie wins every round of Hangman that we play with the night shift nurse Beth! Her winning streak is back and bigger than ever! 8-letter-words, here we come!
WEANING OFF the BiPAP: Today Jessie gains permission from the ICU team to stay off the BiPAP mask and ventilator all day long. Instead, she’s supported with high-flow nasal cannula that delivers extra-rich oxygen at high flow rates through two plastic prongs into her nostrils. Her O2 saturation levels stay at 100% all day. Heart rate and respirations are steady, without showing any signs of stress. She’s clearly able to handle the change in support levels, at least for the day. At night, we return to the BiPAP and ventilator so that her lungs get a rest, and we don’t rush our progress too quickly. We’d rather be conservative, and avoid any more reversals such as last week’s lung collapse.
SECOND CHEST TUBE REMOVED: They clamp her chest tube, which has been draining blood and excess air out of her left chest cavity. The followup x-ray shows that the lungs seem unchanged. After several more hours, they clip the stitches and remove the pigtail-style chest tube from between her ribs, then tape down a pressure dressing of gauze. One final x-ray, taken after the chest tube has been removed, shows that the lungs are fine (remember that last week, a similar procedure caused her chest to fill with air and collapsed her left lung and caused an emergency surgical intervention at the bedside).
MOVING AROUND: Jessie manages a few hours out of bed, sitting up. Her spleen and abdominal area are resolving well, girth decreasing, and organs starting to wake up. Her entire gastrointestinal tract, including her colon, is now moving and functioning well. She’s allowed to have sips of “clears” such as water, apple juice and gingerale.
BYE N-G TUBE: Because she’s ingesting liquids, the N-G tube is clamped, rather than continuing to be placed on a suction setting (suction setting empties the stomach of its contents). At the end of the day, at the same time that they remove the chest tube, they also pull out the N-G tube! Tomorrow she’ll resume taking some oral medications!
AWAKE: She’s alert, and able to function without anxiety meds or sedation. In fact, last night she slept without anything to make her groggy. We’re slowly weaning her off as many pharmaceuticals as possible. We read more Roald Dahl, and a new book from the Howe family called Evangeline Mudd and the Golden Apes of the Ikkinasti Jungle. Impatient for an adult to read aloud to her, Jessie grabs the book and starts reading it to herself — out loud — for a while. Then reads to the childlife specialist who comes to room 719. Afterward, the childlife specialist and her tutor both take turns reading to her. We play some games, she holds conversations with staff members.
EMOTIONAL: At the end of the day, she’s swinging between relief and anxiety. As they remove the chest tube, she holds herself rigidly, clenches her teeth, squeezes mommy’s fingers in her fists, and whispers, “I’m scared. It hurts!” About the absence of the hated N-G tube, she says, “This really feels so much better!” Later, she cries, “I just wish I was a normal kid with a normal body.” When we try to discuss her angst, she snaps, “This is a self-conversation, you’re not in it.” Finally, to take her mind off itchy spots on her body, all the remaining bandages and the irritated areas where things have been taken off or pulled out, mommy and nurse Beth play the Hangman game, and she whomps our behinds (aka, wins). (Well, technically, the ICU nurse Beth is on both teams, so she wins either way.) When it’s bedtime, and the BiPAP mask must be strapped over her head, across her eyebrows and the bridge of her nose, then down over her chin, creating a tight seal around mouth and nose, she weeps. She really doesn’t want to wear it ever again...so we explain, once more, why we’re protecting her lungs with some extra rest, in the hopes that when she takes it off tomorrow morning, she never needs it again. She understands, and she doesn’t try to fight us off, as she has done a few times over the past days, as we place the cap and mask once more in place. ** sigh ** But she stops playing or trying to talk to us, and once more zones out, often closing her eyes. As her attending transplant physician said earlier today, Jessie “digs deep” in order to cope with the BiPAP mask whenever it’s strapped on her face, closing in around her.
DADDY and SARAH: Up north, daddy and Sarah have resumed their weekly routines. School schedules are just starting to find a rhythm. Sarah has chorus rehearsal after school, then hangs out at a friend’s house, and then goes to dance class at Ipswich Moving Company Studio. We can easily list her activities in one sentence, but clearly her day is colored with emotions, highs and lows, moments between friends, challenges in class, and all the ins and outs of a middle school student’s day. Sometimes she shares the best or worst parts with daddy, at the end of the day. Some of them she keeps to herself, as she grows older. We’re grateful for the times when she opens up her world and lets us peek inside. She’s becoming more independent, and we cherish our connection to her, and the openness of communication that still characterizes her relationship with the family. Daddy spends the day between the office and a client meeting. At the end of the day, he picks up Sarah from dance class and they wind down together - sharing a dinner delivered by a friend.
Another day is over. Transitions continue. And change is coming...the season, the school year, the hope of a move back to the transplant unit, and eventually to outpatient status!