Wednesday - September 12, 2007

Wednesday, September 12, 2007

Day +64. Such slow increments...it seems like we come closer to freedom from her biPAP oxygen mask and ventilator, and closer to healthy independent lungs, literally one breath at a time. As all the different wounds slowly heal, it is evident that her lungs bore the brunt of the short-term trauma from last Friday’s internal bleeding and abdominal emergency, and will take the longest time to resolve to better function. We expect to stay in ICU through part of this coming weekend.

DIALING DOWN the BIPAP: We are migrating the BiPAP mask/ventilator settings from their original pressure state of 18/10 down to 10/5. Yesterday, we dialed down 16/8. Today we migrate to 15/7. 10/5 seems a long way off.

Jessie, in one of her rare wakeful moments today, makes mommy “pinky swear” (hook little fingers together in a binding promise) and shake hands on a “deal” to convey her message to the doctors in rounds. Jessie’s words? “I can’t take this much longer. I want the mask off.” 

Ah, well, as we have described already, it seems like a sort of torture for her, so she sleeps as much as possible, to forget this interlude as she heals. For her own safety, we must go slowly in the transition off the biPAP machine. Her lungs are quiet vulnerable.

Nevertheless, she briefly gets her wish, in two short but exhausting doses today. Today we attempt two separate 10-minute periods off the mask (supported by oxygen through the nasal cannula or a different sort of mask). She’s off the biPAP just enough time for coughing, spitting, wiping her mouth, cleaning the mask and clearing the tube. Then right back on again. Her O2 saturation levels, with support, stay in the 90s (yesterday they dropped into the 80s and Monday they dropped into the 70s). 

She fights every re-attachment of the biPAP mask. Her hands have to stay loosely tied an interval short of her face, or she starts pulling and working the mask off, or hooks her finger through her N-G tubes and yanks it loose. As soon as her respiratory therapy session is over, she needs Ativan to relax and recuperate (and sleep) so that she’s not constantly fighting the mask and the small white cap that holds it in place. 

Tomorrow maybe they’ll let us try “sprints” off the mask and ventilator for longer periods of time. Longer sprints off the mask, combined with slow reductions to the pressure of oxygen delivered with each breath while on the ventilator, help her lungs with the gradual exercise and expansion that’s needed prior to safe liberation from the machine. It will take us a few more days to slowly wean her off the biPAP’s support of her lungs. 

We expect to remain in ICU through at least part of the weekend.

DEEPLY INVESTED IN JESSIE and ALL THEIR PATIENTS: Meanwhile, everyone comes by to visit. Her surgeon Dr. Lillehei checks the belly, and changes the dressing on the incision made last week when he went in to her abdomen to stop the internal bleeding and to repair her spleen. Her lifelong surgeon Rusty Jennings also checks on her. Her anesthesiology team takes turns dropping by to check on her progress. They fought hard to save her life on Friday, and they are emotionally invested in her survival and her feisty recovery.

Aside from rounds with her primary teams (surgery, intensive care and transplant), we have consults with infectious disease, cardiology, anesthesia and pain management. Physical therapy and respiratory therapy provide her main workouts and the real hands-on sessions that slowly build up her body for recovery. X-ray technicians and ultrasound techs come by routinely to do portable scans, and they always use patience with Jessie. We have a visit from NOPCO (they make and fit braces) to deliver her multipodus boots (quite fashionable) to help keep her feet from losing their flexible muscles and tendons. Her tutor comes every day, even if it’s just to offer to read, though Jessie isn’t always awake for this offer. Primary nurses and oncologists and support staff from 6North and 6West pop by to visit. Childlife specialist Amber and resource room staff members swing through to offer their support, and just to wave hello. Psych-social counselor comes by and hospital pastoral staff check in.

Everyone here offers lots of support.

And of course, we’re meeting and signing up a primary team among the ICU professionals. Things work at a different pace, with a different emphasis, on this unit. As usual, we’re impressed with the competence and compassion of the surgeons, intensivists, nurses, respiratory therapists and support staff who keep her safe and help us work toward enough stability to graduate back to 6West.

OTHERS, TOO: Please pray for Max, Gus and Jessie in ICU. Please pray for transplant patients and oncology patients in all their states: diagnosis, treatment, off-treatment, relapse, complications, end-of-life and survivorship. Please pray for our good friend Keith Harris who is at Mass General. Please honor those we loved, who are gone now. Please bless the skilled hands and hearts, in every unit where we receive care, that believe in our children and help them get well again.

UP NORTH: Family life is in full swing up north. Sarah has her busy middle school schedule, followed by some time at a friend’s house, and then back-to-back ballet and modern dance lessons with Ipswich Moving Company. Daddy’s working, and then he spends time at home with Sarah, creating a rich home life. Neighbor Katie generously brings by some freshly-made enchiladas they enjoy for dinner. They work hard to keep each other on track...because life keeps on going, whether it’s down in Boston in ICU, up north in a house and classroom in Ipswich or at an office in Manchester.

REMEMBER OUR TEAM: You make a difference every day that you follow our journey. We never “expect” or wish to put pressure on anyone to send anything except hope and prayers and good wishes our way. 

And yet, people ask. Of course, we always say to become a registered potential marrow donor. Or to give blood and platelets wherever you are.

But if you are moved to do so, or wonder if there’s another way to help out, please feel welcome to sponsor the Media Milers, who are walking in honor of Jessie during the Boston Marathon Jimmy Fund Walk this weekend. Jessie’s picture will be featured at mile SIX and also at the FINISH LINE. You can check out her grin at www.jimmyfundwalk.org under the “Meet Our Heroes” section, 

or by clicking HERE. And you can read more about her team ONLINE.