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.