Another Post-Transplant Email: After One Week, Still in Intensive Care

Monday, December 11, 2006 2:42 p.m. (sent by Gene)

Dear friends,

I’m writing this note, appropriately enough, camped out in front of a sculpture called the “Wings of Hope” in the lobby of the hospital. A few art pieces like this are scattered throughout the building, commissioned by an Arts in Medicine program. It’s a nice touch that spruces up an otherwise somber environment.

I wish I had better news to report, but Jay’s condition hasn’t changed much since I last wrote all of you. Thank goodness, she’s not trending the wrong way, but progress has been slow and incremental at best. Nearly every morning, the doctors greet me with “Jay’s hanging in there. She’s doing OK, but…“ It’s this pause that I can do without. Usually it’s nothing alarming, but some indicator always seems to be a bit out of range, i.e. low platelet count, a slight fever, too much of this, not enough of that. I’m doing my best to digest all this info, but it can be an overload at times. I’m just proud that I can remember all of the doctors’ names… I’ve dealt with 8 of them so far; 3 surgeons, 3 critical care doctors, 1 hematologist and 1 liver specialist.

Jay is still in intensive care, primarily because she’s having issues breathing. The doctors assure me that Jay’s lungs aren’t damaged; they say her prolonged illness, combined with the trauma of major surgery, weakened her more than anyone could have imagined. Jay has been on a ventilator continuously for almost a week; they want to remove this ASAP because having a huge breathing tube down your throat isn’t very sterile. As an alternative, the doctors are considering performing a tracheotomy. It should enable Jay to breathe a little easier and minimize the chance of infection. But it’s a surgical procedure… and the doctors would rather spare Jay another trip to the operating room if at all possible. The good news: If the “trach” is successful, Jay likely will be moved out of ICU and on to an intermediate care floor. I’m guessing the trach will be done sometime this week.

Meanwhile, Jay appears to be resting relatively pain-free. Good meds, I suppose. Yesterday, she was very alert and waved to me when she spotted me from across the ICU. As I approached her bedside, Jay waggled the ring finger of her left hand, gesturing for her wedding band. I’ve been carrying it around in my backpack and when I showed it to her, Jay smiled and gave me a thumbs-up sign. I told her everything all of her friends and family are doing for her, for our kids and for me. She smiled again and nodded. Jay may not be able to talk, but trust me, she understands your love.

Thank you again for all your prayers and good wishes. God bless…

Gene

Nurses are Angels on Earth - Treat them Well

In my experience, the most important person in the power hierarchy of an organization isn't the person at the top, but the people with un-glorified roles who know what's going on and interact day-in and day-out with the "customer." It's not the company CEO, it's the CEO's assistant. And at a hospital it's not the doctors, it's the nurses and staff.

Think about it - you have surgery and your doc visits once a day to check your breathing, look under the bandage and ask how you feel. Four or five minutes later he or she is out the door.

The nurses - that's a whole different story. They dispense drugs, including painkillers; make sure you have food, something to drink, a clean gown; and hold your hair back when you vomit. Nurses also suction your trach tube when it's clogged with phlegm and share tips about how to keep your IV line from becoming tangled. Nurses are angels on Earth.

Other deserving staff including nursing assistants (they also hold your hair when you vomit), nutrition employees who deliver your meals (which are often the highlight of the day) and maintenance workers who mop up all that stuff you expel onto the floor.

If your hospital stay extends for more than two or three days, these people become very important in your world and they should be treated well and with respect. During my transplant-related hospital stays, I took candy for the nurses and staff (and docs, too - after all, they saved my life). I'm not talking cheap hard candy - it was mini chocolate bars for those folks. When the supply ran low my husband bought more.

I also take candy to family and friends who are hospitalized, for their nurses. I want them to get the best possible care, so I treat their nurses well.

I'm interested in other opinions on this topic, especially from nurses and hospital staff. What can patients (and their family and friends) do to express gratitude? And if you've been a patient, what have you experienced? Please tell us by leaving a comment.