I told myself that running a marathon would only take a few months, and wouldn’t need that much time. I’m discovering though that this race is becoming a central focus of this spring season. I’m rearranging my schedule to fit in the distance runs and planning my summer around the marathon. I’m shopping and researching which items I should obtain before I get stuck in the middle of twenty-six miles as a blistered mess. It’s a delicate dance: in order to run such a race I need passion and perseverance, yet I also need to hold it with an open hand and keep my priorities in order for the other 23 hours of the day.

I’d be a fool to think that at 6 out of 18 weeks, I am a third done with the training. The longest and hardest runs – and weeks – are yet to come. Only recently did I begin to mention to friends and acquaintances my maniac marathon plan. I was afraid to look foolish, especially since my attempt last fall ended before finishing five miles. Already I feel a bit of the blahs, the excitement of the early morning rising and running competing with a need for sleep, a sense of impatience and weariness setting in before I am out the door. It is this middle of the training, as in the middle of the marathon, that requires endurance. I’d be a fool though if I stopped now, when I can start to imagine how the finish line feels.

A Seattle hospital’s recent decision to switch antiseptics from a brown solution to a colorless liquid appears to have played a key role in the death of an Everett woman.

Mary McClinton, 69, a tireless worker for the disadvantaged, died early Tuesday. She was mistakenly injected with antiseptic — rather than a marker dye — during a brain-aneurysm procedure at Virginia Mason Medical Center 19 days earlier, on Nov. 4.

The hospital this week took the unusual step of publicly explaining, and apologizing for, the error.

At that time our daughter’s surgery date was approaching so I noticed this story with horror and fear: what if that happened to our family? Thank God it didn’t.

However, Virginia Mason entered 2005 with a public relations problem, at least in my mind. How will this hospital recover from such a publicized, preventable and deadly error?

In a recent bill from the clinic, I found the hospital newsletter with its theme for the year: Ensuring the safety of our patients.

I applaud Virginia Mason’s disclosure and public apology. I’m grateful the organization wants to focus on patient safety. Our family has received good care at their clinics.

However, whose job is patient safety? Below the message from the CEO is an article describing how Patient Safety Starts With You, listing ways you can be a safety inspector.

Anyone who has undergone intense medical care, such as surgery or birthing a baby, may not be in the best mindset to scrutinize what the staff are doing. Furthermore, I’ve discovered that if I ask many questions, it might seem that I don’t trust my staff and physicians. That too can create tension and issues. While I appreciate Virginia Mason’s suggestions, as a former patient, spouse of a patient and mother of a patient, I know that patients and their families aren’t always able to notice, speak up or effect change in medical care. Emotional and physical fatigue take their toll. We lack information and experience. Personalities can clash. Communication can be ineffective. Shouldn’t we be able to trust the hospital staff? Doesn’t the staff want us to trust them? How do we build the proper bridges between imperfect people in a hospital?

In light of the mistake made at Virginia Mason last year, I find the claim that Patient Safety Starts With You could be interpreted as putting the blame on the patient for failing to prevent a situation. Should Mary McClinton have asked the staff whether the injection contained dye or antiseptic?

Indeed patients should be involved in their care. I try to be a conscious medical consumer, asking questions, researching answers, permitting procedures only when necessary. Yet I know I can’t know or observe everything. I have to trust my doctor and staff, sometimes even blindly. For example, during Michaela’s surgery, we were not allowed in the operating room.

Trust is a delicate dance. Major mistakes result in litigation and more importantly loss of life. Community bridges break. How do we as patients learn to bear our responsibility appropriately and encourage our medical care providers to do their jobs as well as they can? How can we waltz and walk together with grace?

I can’t remember the last time I felt this ill. Friday night I felt strange but I hoped I could sleep it away. However, Saturday morning I woke up and I knew something was wrong. I felt too weak to try to go for my morning run and the thermometer confirmed fever. I spent most of the rest of the day sleeping, or trying to sleep, in a fog of heaviness, dizziness and congestion.

Colds and respiratory woes are not unfamiliar to me but it was the fever that hit me hardest. I don’t know when I last had a temperature; at least two or more years ago, I think, before I had three kids. In the midst of my mild delirium I started to wonder why the word “fever” is used in a positive sense, to express “an intense…enthusiasm; craze” (Am Heritage dictionary) as in “Football fever”. I could never be enthusiastic about a fever!

I am grateful that the girls are as independent as they are. If I had been this ill a year or two ago, it would have been much harder on everyone. Ted came to the rescue and cared for me, cooking meals, watching the kids, getting Gatorade and Kleenex at Safeway. It was good to learn to let go, although it wasn’t learning as much as surviving in the moment – who can care about anything when your neurons are too cooked to function?

From the perspective of psychoneuroimmunology, a field in which I once did a little research, I can understand why I got sick this weekend. Michaela’s surgery has been weighing on my mind for years and it’s successful completion probably released some tension in my body. After spending much of January in seclusion, resting and preparing for the operation, we had a busy week and were exposed to many people and places. I was pushing the limits and cutting my sleep short. So I shouldn’t be surprised I am sick.

Yesterday Abigail complained she wasn’t feeling well and today she’s had a slight fever. I only hope the other kids and Ted don’t catch it.

Tonight I feel well enough to try to publish some posts. I’ll see what I can do. Although I’m feeling better I still feel like a need a new nose. Last week How to defuse a nose got me laughing and kept me smiling all weekend despite my delirium….thank you, Anne!

In the meantime I’ll start practicing piano again and see if I can find a gig in a jazz club where I can use my new voice.

what I need at home this week!

scene from the hospital waiting room yesterday

Thinking about Michaela’s surgery yesterday, I realized I’d like to write up ideas from our experience that might help other families in a similiar situation. Here are 12 tips that came to mind.

1. Talk about it

   Talk about it with the hospital staff. Ask questions.
   Talk about it with the kids. Set expectations as much as possible.
   Talk about it with each other as parents. Share responsibilities… and fears.

   We tried not to mention it too often with the children. We didn’t want them to think it was a big deal and be concerned. However we did want them to be prepared for what might happen.

   For a while I tried to deny I was afraid. But telling my feelings to Ted helped me prepare. I felt calmer after a cry.

2. Do the math

   Two kinds of calculations are required. I needed to call various offices to ensure insurance coverage and to determine what our family’s bill would be. (I’m amazed that this minor surgical procedure will cost nearly as much as Michaela’s birth.)

   I also had to determine when Michaela could have clear liquids. However I made a mistake in my math, confusing “check in time” with the time the surgery was scheduled. By time I realized my error it was too late and I had missed the window when our daughter could have enjoyed apple juice. She was understanding and I am grateful.

3. Prepare well in advance

   Allow for enough time in preparation that morning in case other small emergencies erupt. Yes, let’s just say that Elisabeth decided not to digest her dinner Thursday night. I was glad I had enough time to give her a bath before we had to get to the boat.

4. Fun for the whole family

   Others may not agree, including the hospital’s information packet, but I believe we all benefitted by being together. Abigail and Elisabeth knew nearly as much as Michaela did before she went to her surgery. They were only separated from her for the hour or so that she was in the operating room. The girls were able to see what Michaela experienced. And the sisters benefitted in tangible ways from the generosity of the nursing staff who treated them to popsicles, stickers and toy bears that Michaela received.

5. Pack snacks

   Since Michaela’s procedure was short, I was glad we had packed snacks. Otherwise we would have had to take a longer lunch and might have missed her recovery. Cheese sticks, crackers, juice boxes and granola bars made easy munching. Snacks were also helpful in the van commute home, when Michaela was hungry, after fasting for hours.

6. Hold hands

   Hold hands. Give hugs. Cuddle. Kiss. Repeat.

7. Take toys

   Michaela brought two of her hippos, each named Happy. I let her sisters each bring a toy too. The hippos accompanied Michaela into the O.R. and lay on her lap during recovery. I also packed stacks of books. A pad and pencil for each girl proved to be fun when we began playing tic tac toe among ourselves. However, I’m not sure I needed to bring as much as I did. The waiting rooms were amply supplied with toys. The child-sized blood pressure cuffs and plastic but functional stethoscopes seemed to be favorites.

8. Take pictures

   Ted gets the award for most creative hospital use of a digital camera. After we were told that the recovery room didn’t have a mirror, Ted grabbed the digital camera and used it to show Michaela what she looked like after surgery. From the photos I snapped, I now know what she looked like in recovery and I can tell what has changed since we left the hospital. Thanks to the offer from one of the staff, we even took our first family photo in years, Ted and Michaela in their hospital attire!

9. Talk to strangers

   Crises break taboos. Sitting in the waiting room, we met two other families whose children were also surgery patients. Conversations started. I found comfort knowing we were not the only ones. In retrospect I wish we had attended one of the parties the hospital held each month for pediatric surgery patients; perhaps we would have met new friends there too.

10. Find fashion that fits

    I’m glad I thought to bring Michaela a sweater that zipped rather than pulled over her face. However, I wish I had thought ahead more and had tried to buy one or two other cardigans. She will probably spend the weekend wearing the same outfit. No one mentioned this need to me but I thought of it myself.

11. Use our doctor

    Perhaps it’s too early to post a recommendation. But I am grateful for our physician, pediatric opthamologist K.David Epley. Not only did he respond to email when planning the surgery, but on Friday he also gave us his cell phone number and then called us later to see how we were doing at home. He also called this morning. I appreciate his style of asking whether we have questions and listening to us. He even accommodated a strange request of ours. Both he and the staff anesthesiologist visited with us before and after surgery. I would give high marks to Swedish Hospital as well.

    A physician’s ability to communicate is a crucial skill. Referrals, and experience count, but if the doctor can’t talk to me or speak on my level, I’d try to make another choice. I took Michaela to a doctor who has more experience and authority but he couldn’t connect well with me or my daughter. A doctor that wants to know what I think and treats my children well will receive referrals from me. An assortment of plastic sunglasses helps too.

12. Throw a party and pass out presents

    Earlier in the week I had asked Michaela what she wanted to eat after her surgery. So we bought a pepperoni pizza. I let each of the girls choose a treat in the store to share at our special supper. It was fun to have a little party.

    We did open a few gifts last night. But I believe the best presents are praises. I tried to thank the girls and especially let Michaela know that she did a great job. As I could I tried to thank the doctors and staff and let them know we were grateful. They were wonderful.

Michaela’s surgery was one of the best experiences I have had with medical care. I hope that these tips help others have a good experience too.

Perhaps it is that my body has lost its elasticity. Or that I am having a harder time maintaining my physical conditioning. But I’m finding that I can’t train the way I once did. My time to run is in the morning, before the girls wake. If I push myself to the edge of what I can achieve, then I am too exhausted before the day has begun. If I put all I have into pushing my limits, then I don’t have physical energy and the right emotional state later when my daughters push my limits. I know that as I get in shape, my abilities will change. But for now, I am trying to take smaller steps and be satisfied with slower progress. Moderation in everything, even intensity. And impatience. I’m learning it won’t happen all at once. The road to speed may be slow.

I thought that the cutest point, so to speak was Learn to love alcohol-based hand gel…Carry little bottles with you…. Guess I need to buy more of those. I think I remember Enoch writing about hand sanitizer gel (but I can’t seem to find his post). How about the suggestion not to kiss others when sick? Or strategies for sneezing into the upper sleeve? Stay home is the best advice for sure.

This list made for fun bathroom reading and I hope it is a helpful reminder to others.

Ted and Abigail had to go to soccer pictures early Saturday morning so I took Elisabeth and Michaela to the preschool gym class using the stroller and backpack. I figured why not?