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Daniel's Story Chapter 3.


3.5. The decision to go to Japan

There is one thing that bothers us, and this is Daniel's next operation.
We speak with the doctors about a possible correction of Daniel's heart defect. There are two possibilities, a so called Fontan operation and the Rastelli operation.
In a Fontan operation, the inside of the right atrium would be separated from the heart by a Gore-tex membrane, and the blood would flow through an artificial connection to the Pulmonalis. From there the oxygen rich blood would flow into the heart and then be pumped back into the body. The advantages of this operation is that the AV-channel and the combined Mitral and Tricuspidal valve would be kept untouched. The disadvantage is that the blood flows without the pumping support of the heart more or less directly from the body to the lungs.
The Rastelli operation involves a more drastic change of the heart's architecture. From the left ventricle an artificial connection would be made to the Pulmonalis. A membrane would separate both ventricles and atria and the combined valves must be separated, too. The advantage is that the heart would have the functionality of a normal  heart, with 2 atria and 2 ventricles, but due to the fact that the right ventricle is smaller than usual, this would give more stress to the pumping ability of the heart. Furthermore, the separation of the Mitral- and Tricuspidal valves is not trivial.
Anyway, such an operation would have to be made when Daniel is older. The doctors need a heart as big as possible for such an operation, thus either Fontan or Rastelli is normally carried out before enrollment in elementary school.

The rest of the year 1991 goes by withoiut incident. I think we have earned a rest after the turbulent winter and spring. Summer is hot, and finally I buy the first car in my life, an old Audi 100. With this, we travel to the Black Forest, to a nice resort hotel and spend our summer holidays in the pool and hiking.
When Daniel lies in his bed, or in the baby car, we see that he lifts his legs from time to time. He tries to rest them on the rim of the baby car or the bed. He looks very cool and relaxed in this pose, but the reason probably is that with his legs being higher than his heart, he allows his heart a rest. It is interesting to see that he does this out of a reflex. He himself knows what is best for him.
Back in Mainz, I decide that my research results are sufficient for a successful defense of my Ph.D., and my supervisor and I agree that I should start writing my Ph.D. thesis. From my first stay in Japan as an exchange student I still keep contact with a few professors in Japan, and Yuki and I decide that I should apply for a fellowship from the Japanese Ministry of Education. Daniel is in a stable condition, and it should be no problem to go to Japan for a year as a post-doctoral fellow.
Since the next operation is scheduled in 2-3 years, the doctors have no veto for Yuki's and my wish to go to Japan for a year, and thus we continue our preparations.
My scholarship is accepted, and and my Ph.D. defense is scheduled for the 21st of April 1992. Our tickets to Japan are booked for April 30.
In the morning of my Ph.D. defense, I am already in my dark violet suit and ready to leave our apartment, Daniel crawls! More than two years old, he makes his first move! The way he does it is interesting to see: he sits on his blanket on the kitchen floor. He reaches with his hands in the floor in front of him and shifts his weight onto them. Then he barely lifts his bottom and slides forward a few centimeters. Healthy kids half of his age can walk, and he just barely moves a few centimeters, but for Yuki and me this is a wonderful day!
The wonderful day continues and I can successfully defend my Ph.D. thesis.In the Chemistry faculty the students have the custom to parade the fresh PhD across the campus. For each of the graduates his peers prepare a a funny kart which is somehow related to that person. In my case, they chose 'Japan' as the topic. I thus climb into a paper-Fuji-san and eat cookies with over-dimensional chop sticks that are handed to me. Daniel, as afraid as he is, does not want to climb in it, but except of this, he also has a great time with his Doctor-daddy.

We are afraid that an eleven hour flight to Japan with a cabin pressure that is set to level that corresponds to an altitude of 3000 m, might be dangerous for Daniel. But the doctors say that it will have no adverse effect. Nevertheless, we decide to contact the airline and tell them that they have a heart-patient on board. From a friend of ours, a stewardess, we know that the crew has a list about special needs of passengers on each flight. Thus we think it might be good to let the airline know. But since it would cost the equivalent of 3 additional tickets to accommodate a doctor and an oxygen generator, we do not request it, but we ask the clerk on the phone to mark on the VIP list that Daniel has a congenital heart defect.
The day of our departure has come and we check in our luggage- two suitcases-and proceed to the gate. We are ready to board the plane and I tell a stewardess "For sure you know that there is a patient with a congenital heart defect on this flight. It is our son." Surprisingly she didn't know anything, and after an urgent check with the ground crew it turned out that since I did not request an oxygenator for Daniel, no information at all was given to the flight personnel. The sudden notice made the flight crew somehow nervous and we are asked a few times during the flight if Daniel is okay. It turns out that the flight is no problem for him, even though he is slightly more cyanotic than usual. He sleeps well in his litle bed and we arrive in Narita International airport without any problem.

 

 


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Chronology

1. Chapter 1.

1. Introduction
((uploaded Nov 1, 2000 last update Dec 12, 2000)

2. The first months of his life

2.1. Daniel's birth
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.2. First Operation
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.3. On the normal pediatric station
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.4. Our church and the Heart-League
(uploaded Nov 27, 2000 last update Dec 12, 2000)

2.5. Life in Mainz
(uploaded Nov 27, 2000 last update Dec 12, 2000)

3. His first year

3.1. His first baptism
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.2. Christmas in hospital
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.3. Cramps
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.4. Second operation and first near-death
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

3.5. The decision to go to Japan
(uploaded Nov 27, 2000 last update Apr. 24, 2001)

4. 1992-1993 in Sendai
(uploaded Apr. 24, 2001)

5. Daniel's School Days
(uploaded Jan. 24, 2003)

9. His death
(uploaded Mar 13, 2001 last update Mar 13, 2001)

10. The days after
(uploaded Mar 13, 2001 last update Mar 13, 2001)

11. A New Life
(uploaded Jan. 24, 2003)

12. Annotations

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