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.