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.