information maze

If all goes as anticipated, Kai will be coming out of surgery in exactly a week from now. The information and images from yesterday's hospital visit are sinking in and causing some turbulence at night. I am still grappling with the sight of crowded rooms and the realization that we might not be able to spend the nights with Kai. The hospital is simply too full right now and next week looks the same. All we can do is hope that this doesn't too negatively impact the quality of care. It seems like things could so easily fall through the cracks.

It has been quite unnerving navigating through the discrepancies of information. Initially, back in March, we were told that Kai would spend 24-72 hours in Intensive Care and then 3-10 days in the General Care area with the possibility of another child in the room. Now they are talking about 1 night in the ICU, 3 days in General Care and then he'll be discharged on Saturday, four days after surgery. I'm wondering if they're rushing people through because it's so busy. The recovery time has somehow also shrunken. In the beginning, we were told that the healing period at home is 4-6 weeks. Now they're talking about going home on tylenol and being back to normal in a maximum of 2 weeks. I guess we'll see.

I've gotten different messages about whether we can stay with Kai until he is unconscious. Some people have said parents can't be there when the anesthetic is administered, others have said it depends on the anesthesiologist. One gruff nurse did not mince her words: "In any case, you don't want to be there. You don't want to see your child's eyeballs roll upwards and them flailing their arms and legs around before going under." Thanks for that information?

The most puzzling and frustrating discrepancy: the cardiologist says an MRI might still be necessary to get a fuller view of the coarctation than the echo has been able to provide. The surgeon, whom we ultimately trust and defer to, says that this is not necessary at all. He scored a big point with Chris when he used a rock climber's term to explain his perspective: "From a surgical standpoint, the CRUX is what the aortic arch just upstream from the coarctation looks like. The MRI will not give me more information than looking at the coarctation with my own eyes. It will not change how I approach the operation, so no need to get a test that I won't use." It still seems that there is merit to the cardiologist's argument, as the length of the coarctation determines whether the surgeon can just sew the ends of the aorta together or whether he has to insert some kind of connecting material. Wouldn't this prolong the operation and thereby impact the amount of anesthesia needed and the length of time the blood flow to the spinal cord is suspended? These are the kind of questions that can keep me up at night.

Chris' approach is probably the healthier one: don't ask too many questions, just trust the experts, they know what they're doing. I'm just not wired that way. I need to communicate (thus the blog) and vacillate between cautious optimism and skepticism. The New York Times had an interesting article on optimism the other day: "Recently, with the development of non-invasive brain imaging techniques, we have gathered evidence that suggests our brains are hard-wired to be unrealistically optimistic. When we learn what the future may hold, our neurons efficiently encode unexpectedly good information, but fail to incorporate information that is unexpectedly bad." Well, yes, but this is a necessary life (and sanity) preserving adaptation to existence. Optimism is part of the art of living and a key ingredient of resilience.

Our pre-op day at the hospital

Chris, Kai and I spent most of today at the hospital and now have a much better understanding of what lies ahead. A day of meetings with cardiologists, nurses, social workers, child life specialists, lab technicians and staff. A lot of taking shirts and socks on and off, answering the same questions over and over again, watching cartoons, collecting stickers, crossing paths with other hospitalized children and their families in the waiting rooms. That part was very intense for me; to see children who'd gone through surgery just recently and to see the mixture of worry, fatigue, courage and resignation on the parents' faces. A brief glimpse into the crystal ball.

First on the schedule were an ekg and hour-long echocardiogram. We'd done both of these two months ago, but this time they wanted to get a better view of the coarctation itself, to see how long and thick it is. The coarctation turned out to be longer than initially thought. It was hard for them to see exactly how long it is which means that he might still need an MRI right before surgery. An MRI would offer a complete view of the coarctation and give the surgeon important information about how much to cut out. If the coarctation is too long, simply sewing the ends of the incision back together again would not work. They would need a graft. Not very encouraging news as the MRI would also mean that Kai would spend an extra hour under anesthesia. They did find that he has developed some collateral bypass vessels that help provide blood flow down to his lower extremities. This is good news, as it lessens the risk of paralysis associated with clamping off the blood flow through the spinal cord during surgery. Once the normal blood flow has been restored, these collaterals disintegrate over time.

Kai was a great sport and very cooperative. While sticking the ekg and echo sensors onto his stomach and chest, the technician asked whether he was ticklish. He answered "Yes ... but I love tickles."

After the tests, we got a tour of the general recovery area where Kai will, in the best-case scenario, spend 3-4 days after he leaves the overnight intensive care station. The facility was pretty crowded with every single bed occupied. Each room has three beds for pediatric patients and one sofa bed for a parent. I had hoped that one of us would be able to spend the nights in the hospital with Kai, but it looks like that may not work, as certainly a parent coming from afar should have priority. That was disheartening, as I'd like to minimize the time that Kai is alone. The floor has a pretty nice playroom with a fish tank, big train set, play telephone booth and other toys. They encourage the children to start walking the day after surgery and the playroom is a good motivator. The top floor has a spacious and light-filled family room with a library, computers, arts and crafts area, sofas and kitchenette area. On Thursday evenings, they have musical events there. The room leads out onto an outdoor rooftop terrace with a big play structure. That was the nicest area of the hospital. The Children's Hospital is currently undergoing construction, so eventually the facilities will be larger and more modern.

As part of the recovery experience, we can request that a musician come by and play music at Kai's bedside. A therapy dog can also drop by for a visit. For each procedure (ekg, echo, surgery, blood draw, radiation, intensive care unit, in/extubation), Kai collects a colored bead to make a necklace that will tell the tale of his hospital stay.

We then had a somewhat rushed meeting with our cardiologist, Dr. Armstrong, who explained what she saw (and didn't see) on the echocardiogram. She did reassure us, though, that given what she had seen of Kai's coarctation, surgery was really the only way to go. The less invasive balloon angioplasty (a technique in which she specializes) would not have worked for his particular anatomy and the character of his coarctation. It was good to have her definitively confirm our decision.

At the packed cafeteria, we learned what not to order again. A large window overlooking the tree tops of the arboretum and vast sky covered one entire side of the room. The cafeteria made somewhat of an impression on Kai because, when asked about his day later on, he replied that he drank some chocolate milk there.

After lunch we met with one of the social workers who introduced Kai to the different medical instruments and let him perform some medical tests on a hospital bear (picture above). She told us that this kind of medical play is particularly helpful after surgery when children process what they have experienced through play. She took us into a surgery preparation room where children go right before and after surgery. The room was packed with children of all ages preparing for or recovering from surgery. We didn't go into the actual surgery rooms, of course, but peered down a long light-blue hallway with a dozen white doctor's gowns hanging along the wall. We were sent home with a big bag of protective and anesthesia masks, rubber gloves, a head covering, and a few stress-release toys.

The formalities and practicalities of the surgery were presented to us at the very end. One interesting tidbit that could have been mentioned much sooner: don't take ibuprofen for 2 full weeks in advance of the surgery. One of the immune-boosting supplements I have been giving Kai recently to ward off colds etc contains echinacea. That is apparently a no-no for surgery-bound individuals as it can cause excessive bleeding. The nurse reassured me, though, that everything would be okay if he was off echinacea for this last week before surgery.

We have been reading hospital books to Kai and playing with the medical kit, but haven't told him yet that he will be hospitalized. So, he caught us a bit off guard with a question he asked over lunch: "So, what are WE doing here?" We explained that we were visiting the places described in his books and learning about how a hospital works. That seemed to satisfy him, a bit.

Laughing Matter

In anticipation of the less-than-fun weeks ahead, we've been loading up on fun activities these past two weeks:

1. Visited the Detroit zoo where we saw a 2-week old zebra, a peacock displaying its feathers, 7 emperor penguins marching single file around a fake slab of ice, two toads peeking out of two holes in the mud and croaking alternately, an alligator opening its jaw wide just as we stepped up to the glass, a tropical butterfly escape the butterfly house, 2 anteaters digging around on a mound of holes.

2. Went to an African safari birthday party dressed as a zebra. The party included a treasure hunt in the woods, ostrich egg race, roasting marshmallows on an open fire, climbing into a treehouse, eating lots of cake and ice cream, and sitting in a circle on logs playing games.

3. With our pirate headscarves on, we went to see the play Treasure Island with fierce pirates and deadly sword fights. Kai got to shake hands with Long John Silver after the show.

4. Went to Musictime in the neighborhood park for the first time since last Fall and had a great time singing, dancing, playing instruments, and running around with old friends.

5. Went to Storytime at the library where Miss Laura told a story about a frog who dreamed of flying and tricked an eagle into letting him get on his back to soar through the sky together.

6. Played drums with several other kids at Oz' music shop and, during open mike, sang Twinkle Twinkle Little Star on stage with guitar and drum backup.

7. Played hide and go seek with neighborhood friends, climbed a cherry tree and went for many bike rides around the neighborhood.

8. Stayed up past bedtime one night to watch the fairy house next door light up.

9. Ate chocolate ice cream.

10. Bought flowers at the farmer's market and planted them in the garden.

Waiting game

When Kai refers to past events, he uses random time expressions. He raises five or ten fingers to ask how much more time he has to do this or that. As he is coming to terms with the concept of time, trying to pin it down to a precise number, we're losing our sense of normal time. Two months ago, when we were told that Kai had to have surgery in one to three months, it all came too fast. We felt that the allotted time was too soon. Since making the decision to proceed with surgery, time has passed very slowly. This has been the most challenging thing of late. On one hand, this suspended time gives us the opportunity to make the most of these numbered days. On the other hand, we just want to put it all behind us.

This sense of suspended time feels odd when outside the world is roaring on. Since our personal little world changed, there have been massive earthquakes, tsunamis, nuclear disaster, floods, tornadoes, revolutions and crackdowns.

Ceding control

Preparing for Kai's surgery is throwing me back in time to the month before he was born. We were in Boulder and I had the luxury of time to read books about natural childbirth, to enroll in prenatal yoga classes and to fully visualize his birth. There was no doubt in my mind that he would be delivered naturally and without the help of medications, so I completely ignored the discussion of epidurals during our birthing classes. Lo and behold, everything turned out differently than planned (of course!). Because he was breech and I was a "high risk" pregnancy (given my age), Kai was born by c-section in a rather cold, flourescent lit room and I was drugged up in lala land. The polar opposite of my birthing book-inspired fantasies! We didn't even bother with the cd I'd carefully compiled for the occasion. In the end, what mattered was that Kai had all of his fingers and toes. And given the dizzying intensity of the weeks and months that followed, the specifics of his birth seemed rather unimportant.

So, here I am again planning everything and making sure that I'm not forgetting anything. At the same time, I know that no matter how much you plan, things often turn out differently anyway.

On her radio show "On Being" for Mother's Day, Krista Tippett had a wonderful interview with the Jewish-Buddhist psychotherapist Sylvia Boorstein about raising children in a complex world. Boorstein described parenting as the "greatest loss of control." Parenting awakens us to our own vulnerability. Acceptance of this reality has the potential of nourishing our inner life.

Towards the end of the interview, Boorstein led a metta meditation. May you feel safe, may you feel content, may you strong, may you live with ease.

http://being.publicradio.org/programs/2011/what-we-nurture/video_lovingkindness-meditation.shtml

She ended with a lovely poem by Pablo Neruda "Keeping Quiet"

Now we will count to twelve

and we will all keep still.

For once on the face of the earth,
let's not speak in any language;
let's stop for one second,
and not move our arms so much.

It would be an exotic moment
without rush, without engines;
we would all be together
in a sudden strangeness.

Fisherman in the cold sea
would not harm whales
and the man gathering salt
would look at his hurt hands.

Those who prepare green wars,
wars with gas, wars with fire,
victories with no survivors,
would put on clean clothes
and walk about with their brothers
in the shade, doing nothing.

What I want should not be confused
with total inactivity.
Life is what it is about;
I want no truck with death.

If we were not so single-minded
about keeping our lives moving,
and for once could do nothing,
perhaps a huge silence
might interrupt this sadness
of never understanding ourselves
and of threatening ourselves with death.
Perhaps the earth can teach us
as when everything seems dead
and later proves to be alive.

Now I'll count up to twelve
and you keep quiet and I will go.

Preparations

Two and a half more weeks to go. Eighteen days. While everything is light, breezy and blooming outside, anxiety comes to sit on our chests. I feel it around my heart.

I've read that children who are prepared for surgery recover more quickly and suffer fewer emotional problems afterwards. Those who go in unprepared can feel helpless and betrayed by the people they trust to protect them. The way the parents behave can also promote or undermine the child's coping mechanisms. Engaging in humorous, unrelated conversations can be helpful, whereas anxiety or excessive verbal reassurances can be just the opposite. How and when to prepare a child for surgery depends on age, personality and prior experience with hospitals. Thus far, Kai has been an exemplary patient. He has the utmost respect for doctors and is accommodating in ways unseen at home. We'll see if that lasts. In terms of personality, he tends to be fairly adaptable and easy-going.

How to prepare a preschool-aged child for surgery? The literature first describes some of the general developmental characteristics of this age group: their cognitive development is characterized by egocentric and concrete thinking, they think in absolutes (good/bad) and may view surgery as a punishment for something they did wrong, they fear separation from parents, they cannot conceptualize internal body parts, their coping strategies and concept of time are limited, fantasies tend to dominate, they cannot think logically and learn through the senses, they are very concerned with body integrity and fear mutilation/pain (who isn't?!), their attention can still be refocused from scary to comforting things.

So, when talking to Kai about his upcoming surgery, we should keep the explanation short, simple and reassuring. Something like "We will be going to the hospital and staying a few days. The doctor will do an operation to help your heart work better. The doctor will make you go to sleep before the operation so you won't feel anything. When you wake up, we will be right there. When your heart is fixed, you will be able to run faster without getting tired and your legs won't hurt so much anymore."

Pictures are particularly helpful, so we'll introduce the idea of surgery with the help of familiar characters who all happen to be going to the hospital, too: Clifford, Big Bird, Curious George and Franklin. Medical play, such as measuring a stuffed animal's temperature, is also recommended. In the hospital, the nurses can simultaneously do a procedure on Kai and his beloved stuffed dog, Bama (see above). The hospital also sent a booklet with child-appropriate relaxation tricks for dealing with stress: Take a very deep breath and gather up the pain into one big red cloud. Now, with all your strength, blow the red cloud out of you.

Since children this age have a vivid imagination (Kai recently compared a peeled banana to an octopus with four legs) and a naive sense of time, they should be told about the upcoming surgery only shortly beforehand. Some suggest that it is sufficient to prepare the child the night before (older children need more time to process the information). Others say 1 day for every year (i.e. three days in advance for Kai). I think we'll broach the subject with him a few days in advance, using the already introduced children's books as a point of reference.

The Child and Family Life program at Mott's Children's Hospital offers tours of the facilities, including the Intensive Care Unit, so that the child becomes familiar with the premises and equipment. The child gets to put on a hospital gown, ride on a stretcher, lie on an operation table, touch the oxygen tubing and put on an anesthesia mask. He will likely see other children who are recovering from surgery. So, when the day comes for his turn, things will be familiar. We're scheduled to take the tour next Monday, a week before surgery. They will talk about the hospital experience in general terms ("this is what children experience here") and then we can refer back to the tour when we talk to him about his upcoming visit ("remember the day we went on the hospital tour ...").

The hospital offers other supportive programs. Children who have undergone surgery can collect colored "hope beads" that symbolize the different stages of their hospital experience. It is a way of showing what they have been through and how brave they were. Every two years, the hospital hosts a reunion for children with congenital heart disease, allowing families to connect with others. There is a summer camp in Minnesota for older children with heart issues and several parent support networks, such as Hearts of Hope. We have unwittingly become members of a new club. If, as the statistics say, congenital heart disease affects 8 out of 1000 live births, the club is pretty big. It is a separate, parallel universe. One of many.

Surrender

Surrender

Let go of the ways you thought life would unfold;

the holding of plans or dreams or expectations

Let it go.

Save your strength to swim with the tide.

The choice to fight what is here before you now

will only result in struggle, fear,

and desperate attempts to flee from the very energy you long for.

Let it all go

and flow with the grace that washes through your days

whether you receive it gently or with all your quills raised

to defend against invaders.

Take this on faith:

the mind may never find the explanations that it seeks,

but you will move forward nonetheless.

Let it all go

and find the place of rest and peace,

and certain transformation.

My yoga teacher opened class with this poem by Donna Faulds and it really spoke to me, particularly the line

about the mind never finding the explanations it seeks. And of having to let go. Letting go of the need to have

all questions answered (no matter how many questions I have, there are always more). And letting go of the

fantasy that I can control what is going to happen.