See Kai run

Seeing Kai run with abandon has been one of my happiest moments. This recent video taken on Lake Michigan brings to life a vision I held of him during those difficult months prior to surgery.

8 week check-up

I haven't written in a while because, for the most part, life has returned to normal and our thoughts (thankfully) revolve less and less around the initial intention of this blog (kai's heart) and more around everything else.

Kai had a great time camping up in the Upper Peninsula last week with Sue and I. He's been enjoying the company of his 6-year-old cousin, Daniel (who just arrived from Germany), following him around like an eager puppy. And yesterday Kai joined his friends in running naked through the garden. He's been having a great summer.

Today, we went in for the post-op meeting with the cardiologist. He had a routine ekg ("the stickers they put on my tummy instead of the ones I put on the wall") and then we waited for over an hour playing tic-tac-toe, I spy something and other guessing games. Finally Dr. Armstrong arrived. She could easily find Kai's pulse in the leg (something that was hardly discernible before the operation) and said that his blood pressure differential between upper and lower body was now good enough to lower his daily dosage of blood pressure medication. Yeah!

She could still hear a slight murmur which is related to a slight narrowing of the aortic valve (something they knew about before the operation and not related to the coarctation). Chris and I were both not too sharp on our toes today, so didn't follow up with a question, but this narrowing is probably related to Kai's bicuspid valve (most of us have a tricuspid valve). In any case, this is something that can't be fixed right now, but will probably require replacement later in life. There have been some major advancements in the field of aortic valve replacement in recent years, so the procedure might look quite different in 10 to 20 years. It will likely involve a relatively non-invasive catheterization. For now, we just have to wait and see how things progress.

We'd heard about minor issues with the left ventrical before surgery. Dr Armstrong clarified that there is a mild thickening of the muscle (related to his elevated blood pressure prior to surgery) which will not improve over time, but may worsen.

Some of the questions about exercise limitations will be answered over time. Whether he will have to avoid activities like rowing or weight-lifting depends on the condition of Kai's heart within the years to come. There is a slight chance of recoarctation (3-5%), life-long hypertension (requiring medication) is a possibility, and valve replacement is a probability.

So, while the news of Kai's immediate condition post surgery was good and reassuring, we left reminded that this is the beginning of a life-long relationship with our cardiologist.

a few anecdotes

The other day, Kai woke up singing a poem that just came to him ("I made it up in my head"):

Morning, morning

the light is shining

it grows and grows

then there comes

the great big sun

Bama (Kai's stuffed dog) still plays a central role in his life. He often asks "Bama, do you need anything?" and Bama answers in a high squeeky voice. Sometimes Kai translates how Bama is feeling "Bama is sad today, Bama wants to be alone." And when we've stayed out too long, Kai lets us know that Bama misses him and wants him to come home.

When we put a swimsuit on to go out to the lake, Kai called himself a "swimoutsider."

He is full of questions these days. Yesterday he asked what ankles are for. When I answered that they help connect our legs and feet, he asked why we have toes and how our legs are connected. Pretty soon his questions will surpass my ability to answer them.

In case you didn't know, underpants can make a cute hat (see photo)

It's been a month since we've been back home and in some ways Kai is back to normal. His scars are healed, his energy has fully returned and he's back in daycare a few times a week. His daytime self seems fine, if somewhat more defiant about control issues or, alternatively, gentler and more affectionate than before. He says sweet things like "You look so pretty" or "Thank you for cooking that yummy dish" and he makes uncharacteristic pronouncements like "I want to paint!" or "I want to be lonely (his word for alone)." He wants to know whether fireflies are good animals, whether the wind can whisk coins away and whether avocados grow on the ground or on trees. He sometimes gets impatient with me ("I've said that already!") and when I give more of an explanation than he actually wants to hear, he holds up his hands and says "No more answers!" He's taken part of the bedtime ritual into his own hands, demonstratively saying "Hug, kiss and goodnight" and then marching off to his bedroom without looking back.

Every night, though, he wakes up screaming and is inconsolable until I've taken him upstairs to sleep with me. He has nightmares about scary things that chase him. Chris and I are quite sleep deprived and it has strained our tempers. We wonder about the things he doesn't talk about or respond to during the daytime that come out at night. He occasionally gravitates back to the hospital books and likes to put bandaids on Bama's invisible wounds, but otherwise there is nothing in his daytime actions to indicate that he remembers or thinks about what happened.

As I was clipping away faded rhododendron and peony blossoms in the garden today, I remembered that they were just beginning to bloom when we returned from the hospital three weeks ago. In the same amount of time, the scab on Kai's chest tube incision has fallen off and the incision from the surgery is almost healed. One day, it will be a faint white line. In celebration of the fact that he can now go back into the water, I signed him up for a swimming class.

So, with the blossoms going into the compost heap to nourish next year's garden, I feel like we can start letting go of the residual tension from the surgery. At least in the daytime, when he plays with his friends and reassures us with his new signature phrase, "Don't worry, I'm alright now." Some of the fears still surface at night, but then again he's at the age when many children have night terrors.

Today had a feeling of reentry into the world about it. It was the first time I stopped monitoring Kai's play with other children. Up till now, I still kept a vigilant eye out for runny noses, excessive activity or potential falls. But today, I trusted him completely. He spent several hours running around, kicking balls, riding bikes and feeding chickens with his friend Finnbar this morning. In the evening, he rejoined his friends from daycare for a family picnic. Seeing him run, play and laugh convinced me that he is ready to go back to daycare next week, much sooner than we'd anticipated. We'll see how his energy holds up. The company of friends will be good for him and it will allow us to get back to our own work.

In mid July, Kai has his six-week post surgery appointment with the cardiologist who will check his progress, reassess his need for blood pressure medicine, and give us an idea about Kai's future, i.e. in terms of limitations on physical activity. The other day we got a brochure in the mail informing us that Kai's condition makes him eligible for certain health services. The designation "chronic condition" broke through my shield of denial, reminding me that this is not a discrete, closed chapter. The next letter was a bill that nearly floored me. The cost of Kai's surgery, hospitalization etc is almost as much as my annual salary (with room charges a little less than the cost of the surgery itself)! Thankfully my insurance should cover most, if not all, of it. Another letter arrived in the mail this morning from a nonprofit organization for families affected by congenital heart disease. They provided a list of several families in the Metro Detroit area whose children were born with Kai's particular condition. The organization also hosts an annual picnic, as well as an event to recognize Congenital Heart Defect Awareness Week (Feb 7-14).

Of course, on Sunday

My mother recently reminded me that whenever I got sick as a child, it would usually and inconveniently happen on the weekend. With the doctor's office closed, we would have to go to the emergency. Kai takes after me in that way.

Last night (Saturday going on Sunday) he woke up at 3 am crying that his leg hurt. The only thing that calmed him down was a dose of oxycodone and ibuprofen. This felt like a big setback since we'd happily been off pain medications for the past week.

Again, it feels as if we have celebrated his recovery too soon. Everything did seem too good to be true. Maybe it is nothing to worry about. Previously underutilized arteries may just be getting used to the new blood flow (after all, he did recently say that he felt blood in his tummy and on his bones). Maybe he overexerted himself on the playground, trying to walk up the slide too many times. The doctors said that children are pretty good at moderating their own activity level and maybe he's still testing out the new parameters.

Then the thought occurs that all of the children we met at the hospital had multiple heart surgeries and that this may not be the closed chapter we have come to imagine after everything went so well, so quickly.

Two week post surgery check-up

My mother left for Berlin earlier today, Kai is napping and it is raining outside. A perfect moment to write. I haven't felt like doing so much since we've returned, either because I was too exhausted or because the days were filled with long overdue home improvement projects. These have allowed us to finally think of life beyond Kai's surgery and given us a renewed sense of control and direction in our life.

Kai went in for his 2-week post-surgery check-up this morning. The chest x-ray looked very good and the nurse was pleased with his general recovery and the healing of his incisions. There is still a difference between blood pressure levels in his upper and lower body, so he will have to continue taking the blood pressure medicine for a while. They don't know why there is hypertension after surgical correction, but it quite common, even expected, as the body adjusts. Hopefully he can be weaned off the medication after the 6 week check-up when everything is completely healed. Until then, Kai can resume his typical activities, including swimming. This is a relief, as now that the hot summer days have arrived, we hope to spend time running through sprinklers and swimming at Pickerel lake and the local pools. Ideally, he shouldn't be hanging from monkey bars or jumping from high places, but we can start treating him like a normal kid again.

The social worker who greeted us in the hospital waiting room this morning emphasized how important it is to allow Kai to be a normal kid. This may take some adjustment on my end, as I am still nervous about his safety. After 3 months of scanning the landscape for potential dangers (I could hear another child's cough or spot a runny nose from a distance), I have to learn how to let my guard down. My impulse is still to protect him and to tell him to take it easy, fully aware that in doing so, I might be making him feel self-conscious and different.

A recent conversation Kai had with my friend Sue got me thinking. Kai had just shown her the two "wounds" on his side and back. She asked how he felt about them, to which he replied: "They did something in me and I don't really know why. It didn't hurt and I don't remember it." Sue felt that he was still processing what had happened and that we should ask him whether he had any questions about the operation. Maybe, with everyone always talking about how well everything went, he hasn't felt comfortable voicing his own confusion or insecurities. He is so good at putting on a cheerful face.

Before going in to the hospital today, he asked why we were going again. I explained that the doctor wanted to check his heart to make sure that he had fixed it well. In light of Kai's conversation with Sue (and contrary to what the social worker in the hospital advised since young children supposedly don't understand these things), I explained in more detail than before what the doctor had done: he had to go in through the side of his body so that he could reach the heart to open a pathway in the heart that was as tight as a closed fist. Now that the pathway is opened up, blood can flow more freely through his body and particularly down to his legs. That explains why his legs are less tired now and that he feels better. Kai listened attentively and told me how he can feel his heart beating: thump thump, thump thump.

The waiting room was packed with families, including a 5th grade girl we had seen during our pre-operation visit. She had just come out of open-heart surgery and was heavily sedated. The sight of her had shocked me. I was so happy to see her today, still pale, but definitely alert and contently playing with a pink video game that matched her pink outfit. When her mother described her grueling medical story (multiple open-heart surgeries, failed angioplasty, misplaced pacemaker), the girl got shy and turned her head away. It made me wonder about how much the children want to hear. The adults talk about them and what they went through, but maybe they don't want everyone to know.

I remember a little girl, maybe 4 0r 5 years old, in the post surgery general care playroom. Her parents were not with her (possibly both working?) and so she was there alone with a nurse occasionally looking in on her. I think her name was Leila and she had the cutest lopsided pigtails. For the hour or so we spent together, she was completely silent, answering questions with a smile, while carefully retracing the black lines of a coloring book with a marker. Her concentrated silence and mechanical smile were both alarming and admirable. Here was a child who was following the etiquette of social behavior (smiling to acknowledge that she had heard what we said), but refusing to engage in conversation. She seemed years older than her biological age.

Returning to the hospital today brought back the memory of the courageous children we met there. I brought a bag of books to donate to the playroom and was happy to know that several of them (Where's Waldo and I Spy books) are high on the children's wish list.

Kai is doing surprisingly well and life is resuming some of its normality with thoughts shifting to more practical, everyday things. We are catching up on our sleep, although each night still feels far too short. The events of last week are slowly becoming a distant memory and watching Kai run makes it hard to believe that they actually happened. Kai does not talk about the hospital experience at all. In fact, when he went in to get stitches removed yesterday, he let us know that he LOVES going to the doctor. The amnesia-inducing drug versed seems to have done its job of blocking out the negative experiences (what else, I wonder). What remains are memories of visits, presents, nurses compliments, and the hospital playroom (see photos). The downside of these selectively positive experiences is that he has become accustomed to non-stop attention. He is definitely testing how much he can get away with now and has succeeded (more often than I wish to tell) in getting a household of adults to attend to him. He seems to have become more willful, perhaps in response to having had so many things decided for him recently. He wants to be completely independent about some things, but then he acts regressively about other things. These are the ways in which the hospital experience has left its imprint.

Overall, Kai is his same old self with a bit more energy. His sense of humor has definitely returned. When a friend said that "kids are amazing," he responded with an impish smile, "And grownups aren't so amazing" (the way I lost my temper with him this morning as he got me running for this and that, I have to agree). This comment also got us laughing yesterday: my mother was explaining to him that since I was born on my father's birthday, I was her present to him. Kai replied, "Did you wrap her up?" We look forward to laughing a lot more now.

Back again

Where to begin. Has it really already been a day and a half since we left the hospital!? The way Kai was running down the street to visit his friend Sefa this morning, you'd hardly think that he just had heart surgery. He is a bit paler, has a bruise on his hand from the iv and some residual adhesive from bandages that were on his neck. He has a 3cm long incision line along his backside and a small incision where the chest tube was--but otherwise he seems unchanged. Quite amazing really.

It seems like we can finally let our guard down, but I can't help feeling wary. During the tornado watch yesterday I kept on thinking about the plane that plunged into the Everglades several years back. People survived the crash, but were then eaten up by alligators. What if a tornado hit the hospital? What would happen to the children I'd grown so fond of over the last week, and to the children who were still in the intensive care unit? These rather irrational, morbid thoughts suggest that I'm still processing everything. Hypervigilance is the baggage I still carry from the past week. I wonder whether Chris and Kai have their equivalent? They don't show it.

We arrived home yesterday just in time for Ilan's radio show. When Kai heard the dedication to him, he looked pensive. Then, as the music played, he gave Chris, Amy, Oma and I each an instrument to play ("here, you play it this way!") and then we danced. He brought all of his stuffed animals out into the living room to greet Bama. It was a sweet homecoming with the table spread with delicious food brought over by friends. And the food keeps coming (thank you Kim and Anne, Bev and Sascha, Laura, Ilan and Sofia!). We feel infinitely blessed.

Photos: Kai back home on front porch, Kai at Big Bird sculpture leaving hospital, Kai sitting on wheelchair (what fun!) ready for chest x-ray

Homecoming

We are back home and Kai is doing amazingly well. On the ride home, he was excited about the green trees. He dragged all of his stuffed animals out of his bedroom to greet the new crowd of hospital animals. I will write more later, just wanted to say that all is well. Everything feels a bit unreal. I'm too exhausted to write and need time to process everything. More later, with snapshots from our hospital stay and return home.

Jaffa Jive

Our friend, Ilan, is dedicating his radio show "Jaffa Jive" to Kai tomorrow. Tune in:

WCBN 88.3 FM

Tomorrow (Sunday)

12 (noon) to 12:30

Don't count your chickens before they hatch

Well, our bags were all packed and ready to go. Now we were told that we have to stay on for one more day and night. Kai's blood pressure has been elevated (apparently quite typical after a coarctation removal) and so he's being put on a blood pressure medication which needs to be monitored overnight to determine the appropriate dosage.

It is the morning of the last day of our hospital stay. If all goes as planned, we will be discharged at noon today. I just arrived back in the hospital, relieving Chris of his night shift. We've fully adapted to this environment, each keeping 10-12 hour shifts like the doctors and nurses, with debriefing sessions during the transitions: "Night ok, nighmare at 2, pain meds at 3, fell asleep at 4, see you at noon."

A friend referred to the hospital as a parallel universe. So true. It has its own supply of energy and air. Time is measured in medication schedules and unless you walk by a window, you completely lose track of outside time. The sound environment is a mixture of whispers, beeps and cries. Children walk around with tubes sticking out of their gowns. They can eat and drink through their hands or noses and walk or even run around within a day or two after heart surgery (Kai took his first wobbly steps 25 hours after surgery!). Parents greet each other in the nutrition room with questions such as "Is Sam getting extubated today? Did Sofia have a wet diaper this morning?"

Chris is on his way to pick his niece, Amy, up from the airport. Kai is slowly waking up. Now that his chest drainage tube ("my tail") is out, he can breathe better and so he is much more comfortable. Getting the tube out was the last big milestone yesterday. It was done in 5 minutes preceded by a dose of morphine and the amnesia-inducing tranquilizer versat. Kai was quite high afterwards, cracking jokes and approaching a baby saying "I LOVE that baby!" The nurse described him as a "drunken sailor." Some kids get belligerent, Kai was like a frat boy who had one too many drinks.

Yesterday morning, we had a special treat. The storyteller from the public library came by to tell Kai a lovely story about a duck who finds his own voice, after trying the voices of a few other animals. Another little boy joined in listening, too. Seeing them smile as the duck puppet mooed and neighed warmed my heart. That any of these children are smiling, and they actually do, is quite amazing after what they have been through. Some children have been here for weeks, others for their third or fourth time. Little Aina has returned to the hospital several times in the past year because her chest tube incision keeps on causing problems. It makes me feel quiet and humbled about Kai's swift recovery.

A visit from dear friends gave us a feeling of almost being home, with weekend plans that included Kai playing outside in the sun. We are so ready for that! I have been packing our bags since yesterday.

Just a brief update between nap at home and going back to the hospital to relieve Chris: Kai is recuperating well, with occasional flare-ups of pain which are still being treated with morphine, oxycodone, and tylenol. The morphine causes itchiness, so benadryl is added to the mix. Thinking about this cocktail of medications makes me queasy, but most important right now is keeping his pain down. Each painful episode is immediately reflected in a rising blood pressure which, in turn, puts pressure on the sutures. The morphine still causes some hallucinations, so that at one point he woke up in panic, thinking that his bed was a stairwell and that he was falling.

When I left Kai with Chris this morning, he was playing with the train set in the playroom. There were two other children his age and Kai greeted them shyly. All were still still attached to their liquids and chest tubes, so moving around was tentative and awkward. The other boy, Sam, had just celebrated his second birthday in the hospital and was on his second open-heart operation. After two weeks, he is about to go back home. When the nurses commented on his beautiful chest scar, he looked very proud and smiled. Kids are AMAZING!

I slept on Kai's bed with him all night, holding his hand. He didn't sleep much, so we pretended the bed and sheets were a tent. He held the flashlight while I read his favorite stories from "Oh, wie schön ist Panama" by the German children's writer Janosch. Two best friends, bear and tiger, who are completely happy together find an empty box that smells of bananas and has the word "Panama" on it. They start dreaming about Panama, a land that must smell like bananas, and set off to find it. They travel far, meeting different kinds of animals, and eventually make their way in a circle back home, not recognizing that it is their old home and that, all along, they were living in a paradise. Kai loves this story. So do I.

Chris spent most of the day with him today while I slept and Oma visited for a while. I will see him shortly and notice the big strides he's taken today. He hasn't been eating much, just apple sauce and jello, but hopefully he'll be able to expand his repertoire tomorrow. We, on the other hand, have been enjoying the food brought over by friends (for today's food, thanks to Janet, Larissa, Celia and Jack!). It has been incredibly helpful to have delicious food waiting at home. Thank you!

I'm not taking my computer to the hospital, so will update again tomorrow. Given how Kai is progressing, we should all be back home by Saturday.

to friends and family

Your support during these past weeks has been amazing--the telephone calls and emails, care packages of food, gifts, prayers and positive thoughts. It has helped us feel less alone going through this. The silver lining of difficult life experiences is rediscovering how generous, thoughtful, loving and supportive friends and family can be.

Many of you have asked whether you can bring food or how else you can help. It looks like we are covered for the time of Kai's hospital stay, with friends having already provided and continuing to provide us with meals throughout the week (thank you so much Rita, Vanessa, Kader, Linda, Janet!!).

With my mother in town for three weeks, we have someone to relieve us when Chris and I need a break. It is also going to be a huge help having Chris' niece, Amy, help out during the first two days after Kai's discharge from the hospital.

Once Kai is home and fully recovered, he will delight in the company of his little friends, so please make time for some play dates this summer.

Day after

The night was fairly uneventful on our side of the room. Kai slept for long stretches of time. Chris and I switched off being at his bedside during the night. Kai is doing even better this morning, color has returned to his face, he's demanded that some of his tubes be removed (some of which were), is eager to get up and walking around (which he will later today). He will be transfered to the general care area later this morning. Right now he's blowing bubbles to help expand his lungs so that liquid doesn't settle in them. His first order of food is on its way--orange jello. The highlight for him is being able to watch cartoons (something completely new to him in our tv-free home). He is intrigued by the different monitors, tubes and a bed that moves up and down.

The team of doctors came by on their morning round to discuss the day's plan and everything sounded good: some more tubes will be removed, Kai can go on a liquid diet, his dosage of morphine will be reduced with a switch over to an oral pain killer. These medical rounds are quite fascinating because the different specialists discuss each case from the vantage point of their discipline, i.e. the dietician and cardiologist had varying opinions about when and how to introduce the liquid diet.

After they left, Kai asked "Why did we come to the hospital?" I explained to him that we'd come so the doctor could fix his heart to make him feel better. At that very moment the surgeon walked in so that I could add, "And here is the man who fixed it."

...

We transfered out of intensive care to the general care unit, leaving behind Kai's curley-headed roommate. Poor girl, during her heart surgery, something happened to the i.v. in her leg. She sustained considerable leg damage and now has to have another operation tomorrow! This accident has supposedly never happened before. In his new room, a teenaged boy who had spent a month (!) in the hospital was just checking out. I continue to be amazed by other people's stories and their stamina.

Walking past the intensive care waiting room this morning, I saw today's parents arriving with suitcases, empty strollers and anxious faces that mirrored our own just 24 hours ago. That seems so very long ago now.

Surgery Day

We all did not sleep well the night before the surgery day. Since Kai was not allowed to drink anything from 4 am on (not even water), I was worried that he would wake up in the morning saying that he was thirsty and then get agitated because I couldn't do anything about it. That thought robbed me of my sleep. At 4:15 am, Kai came up into my bedroom and slept with me, holding my hand, until the morning. Then, sure enough, he asked for some water. I explained that we were camels, holding water in our humps to walk across the desert. This actually worked!

Check-in went quickly. Two other families were also checking in in an otherwise seemingly empty hospital. We left Oma in the waiting room and went into the procedural readiness room where we answered many questions and met many of Kai's medical staff (including the surgeon, anesthesiologist and their assistants). Kai busied himself with toys on the floor as we were literally throwing medical terminology around above his head. Given that we'd intentionally kept things straightforward and simple for Kai, this sudden barrage of information and terminology was a bit irritating. One of the surgical fellows marked an "x" on the spot where the incision would be made and then Kai was given a tranquilizer/amnesia-producing drug. I was holding him as he quickly got quiet and groggy. We reminded him that we loved him and that we would be there when he woke up again. He looked up at me and gave me a weak smile, then they put him in a red wagon to cart him off to the operating room. I wondered briefly if I would ever see him again.

Our friend, Sue, joined us in the waiting room. She hadn't slept much either. She and my mother talked, I faded in and out of conversation, Chris sat quietly. Waiting is never easy and the room was crowded with other families doing the same. We got a tour of the Intensive Care unit, but I was incapable of absorbing the information. Everything felt like a maze and I was perpetually lost. What helped me during the time of waiting was meditating and listening to Buddhist monks chanting. I had been doing this for the last week and so it immediately felt like falling back into a familiar routine.

I stopped looking at the clock, so as not to get anxious. At 10 am a nurse came in to say that everything was going okay and that they were just "finishing things up." The vague statement without further information confused us as we were told that Kai would be out of the operating room by 9:30 am (to make room for the next patient). Why did things take longer? Did something go wrong? Did they have to do a patch? ... An hour later, Dr. Ohye burst (yes, burst) through the door with a satisfied and relieved look on his face. We were immediately reassured by his firm handshake and confident manner. He was still running high on adrenaline and we could feel the intensity of the operating room. He briefly, but clearly, gave us an update.

Kai made it safely through surgery. The operation took two hours and was a bit more complicated than anticipated. It turned out that Kai had a very long coarctation that blocked 3 cm of his aorta, essentially making the aorta useless in that section. His body compensated for this by developing collateral vessels, probably before birth, to pump the blood down to his lower body. So, when they clamped off the aorta to cut out the coarctation, it didn't affect the blood flow to the heart at all--the collaterals were already used to doing all of the work of the aorta. It is absolutely amazing that he was able to function as he did for all these years.

...

Kai is now recuperating in the Intensive Care Unit, going in and out of sleep. The cardiac fellow who gave us a status report on the surgery referred to Kai as a "rock star" (which made Kai smile), saying he was doing great for the first day; moving around, talking and with good results on the many hourly tests they take. He came off the breathing machine shortly after surgery and is now on a cocktail of morphine, blood pressure medication and other drugs. It must make him hallucinate a bit because he said he saw a third eye on my forehead and that I was as tall as the ceiling!

The medical team--consisting of surgeon, anesthesiologist, cardiologist, social worker, nurses--are now making their rounds. They go around and, as a team, discuss each patient and the plan of action. This team comes by three times a day. Throughout the day, Kai has one nurse assigned to him (she is absolutely wonderful) and different kinds of medical staff, including a chaplain, stop by.

We are sharing a room with a family whose 2 year old daughter, Gillian, is on her fourth heart surgery! The courage and stamina of the parents the young girl are quite unfathomable. "We take each day at a time," the mother said. One hallway has a photo gallery tribute to young children and teenagers who were heart patients her and who lost their lives. Compared to what other families have been through, we have been so fortunate. Much to be grateful for.

So, news is good. We feel relieved, but are still cautious.

One more day to go

Kai has been very excited since the arrival of his beloved Oma. We spent Sunday outside, walking in the park, visiting friends and gardening. It was a strangely unreal day. The heaviness of what is to come was temporarily put on hold. The weather was absolutely stunning and Kai radiant. Several people commented on how strong and healthy he looked.

Reality kicked back in this morning, when Kai and I went to the hospital for the last tests (chest x-ray and blood draw) before tomorrow's surgery. He was fascinated by the syringe drawing his blood. Only afterwards did he realize that it actually hurt a bit (the nurse just tied the bandage too tightly) and wanted to sit down on for some Schmusezeit (cuddle time). I gave him the squishy distraction toy from the bag of goodies the hospital gave us last week and explained to him that when he's hurting, it can help to squeeze the ball tightly. That seemed to do the trick. A trip to the cafeteria for some chocolate milk also helped. As we went through the glass-ceilinged walkways, he said we were walking along a long tongue into the monster's mouth. I remember imagining that when I was a child.

In the waiting room, we looked through a coloring book the hospital had given us to introduce children to the people who work in the hospital and some of their medical instruments. When I referred to one of the stuffed animals in the book as Bama, Kai insisted "That's NOT Bama!" perhaps to create some distance between himself and the hospital scenes. He asked again why we had to come to the hospital for the tests, instead of just going to our doctor. I told him that the hospital has much better equipment for taking pictures. He is definitely registering that these are not the usual doctor check-ups, but it doesn't seem to bother him too much. Running down hallways, getting stickers, and looking for the big bird pathfinder markers are in the forefront of his hospital awareness.

We got the call about tomorrow's schedule: we arrive early at 6:15 am, surgery begins at 7:15 and should be done by 9:15 (the next child comes into the operating room at 9:30). We will wait in the ICU waiting room and see Kai again when he wakes up in the Pediatric Intensive Care unit. He can bring one stuffed animal and a toy. The first day and night will probably be one long medication-induced sleep. Chris and I will do alternate shifts for the first night, since only one parent can sit on a chair by the bedside. The next nights, one of us will hopefully be able to sleep in a cot by his side.

Since we didn't want to confuse Kai, we waited until after our hospital visit today to talk with him about the upcoming stay. He seemed excited by the idea of packing a suitcase and spending several nights in the hospital. We began by reminding him how his legs sometimes get tired when he runs and that the doctor would fix it so that he could run as fast and for as long as his friends. He quickly disagreed with our assessment: "But I can run really fast!" We explained that the doctor would give him some sleepy gas and that we'd be there when awakes. He might feel uncomfortable, but the doctor will give him some medicine to make pains go away. To this he said: "I won't hurt." He remembered the playroom we visited last week and was thrilled to know that he could watch "Kipper" movies. So that was it. I don't think he grasped the enormity of it, but then maybe that's the way it is and should be at this age.

Time sped up

Suddenly time has sped up again and it feels like there are 1001 things left to be done, including telling Kai that he will be spending a few days in the hospital. We go in for a few last tests (chest x-ray and blood draw) on Monday and then, if everything goes according to plan, will return to the hospital early the next morning for the surgery.

My mother is arriving from Berlin this evening, staying until June 10. Chris' niece is flying in from San Francisco over the Memorial Day weekend. She is an MD and it'll be good to have her medical input once Kai is back home recovering.

I will keep posting here with updates about Kai since I probably won't get around to answering individual emails. Thanks to all for your continuing support and positive thoughts. I can't stress how life-affirming it has been to know that we've got a wonderful community of friends and family behind us, both near and far. It has made this process more bearable, less lonesome, and I've gotten to know some of you in a new way. I feel blessed.

Shared situation

I had an unexpected conversation this morning with another mother whose 2.5 year old son has the same heart condition as Kai. In fact, it was diagnosed under similar circumstances by the same pediatrician (the skilled Dr. Gold). The young boy had his operation three weeks ago with our surgeon, Dr. Ohye, and is fully recovered now. The mother spoke highly of their hospital experience, saying that we will quickly recognize that what Kai has is relatively uncomplicated in comparison to others who are in for a heart transplant etc. The capacity to recognize that things could be worse is a gift that needs to be embraced. It is key to making it though what seems like an impasse.

Supposedly, the young boy enjoyed the hospital (i.e. the play structure in the courtyard) so much, that he didn't really want to leave. They spent a lot of time blowing bubbles, watching videos and reading books. She said we should brace ourselves for several sleepless nights, but that we can rest assured that we are in the best of hands.

I'd hoped for a conversation with a parent who'd gone through a similar situation with a child Kai's age——and there it was!

UM Children's Hospital #3

Hot off the press (thanks Janet!):

According to the US News Media Group's Best Children's Hospitals rankings, the University of Michigan's Mott Children's Hospital is third in the nation in pediatric heart surgery and heart care (out of 177 hospitals surveyed). Boston is #1 and Philadelphia #2.

Good news for a rainy day.

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.