Daniel's Story Chapter 3.

3.4. Second Operation and First Near Death

Now Daniel is just one year old and the time for another catheter examination comes. The doctors have to check how the shunt works and if the blood flow is within acceptable limits. Thus Daniel is hospitalized and has his second catheter on April 23, 1991. The outcome is not positive.
On the x-ray film it can clearly be seen that not enough blood flows through the shunt. Nobody knows the reason. It might be a blood clot, it might be tissue that grew at the connection point between the artery and the Gore-tex shunt. The decision is clear: a second shunt. This time on the left side, between the Arteria Subclavia and the left branch of the Pulmonalis. After the catheter Daniel is kept sedated and the artificial breathing machine is reattached. Removing the tube for breathing and then attaching it again for the operation would increase the risk of damaging his throat. Thus he waits like this for an operation. One day after the catheter Daniel breaks out in fever. Actually not good timing for a full-fledged operation. The immune system is weak and there is a comparably high risk of an infection. But Daniel's condition gives us no choice.
One thought pops up again and again in my mind. "What if my wife and I do not agree for this second operation? Daniel has had already so much pain and suffering. What if we decide to let him live like this, without a second operation?"
"In such a case, a judge would revoke your custody rights and the state would take custody over your child for the time of the operation. There is a judge 24 hours seven days a week at the court for such cases." Is the answer of the doctors.
Thus it seems that we have no choice than signing the papers to agree to the operation.
On the very next day in the afternoon, just two days after the catheter, Daniel is operated on again. This time the operation itself takes 2 hours, and we can see Daniel late in the evening.
The shunt operation was a success, but Daniel's fever is getting higher. The next day it is nearly 40 degrees!
Moreover, the cramps continue! He stops breathing on the ICU again. I decide to be with Daniel as much as possible and I want to stay at his bed 24 hours. I ask the doctors if it is possible to stay with Daniel overnight, and they agree. Even though Daniel's room on the ICU is small, a small bed is placed besides Daniel's and I can sleep that evening. Daniel's nurse on the night shift  is Karen, a friend of ours and a member of our church. During the night I wake up when the nurses come in, because they literally have to crawl over me to reach some of the monitors. They do this without complaining. One time, half asleep, I notice two nurses, Karen and another person, at his bed. Another cramp! I get up and after the cramp is over, the second nurse leaves the room. Karen tells me that this is the first time that she has seen Daniel cramping. She stands at one side of Daniel's bed, and I on the other. She looks straight into my eyes and says "You know that Daniel may die tonight." It is more a statement than a question.
I touch Daniel's hot and feverish forehead and I reply "Yes, I know. That is why I am here."
We spend a few more minutes standing on each side of the bed and nobody speaks a word. Then she leaves, and I go to sleep at Daniel's side.

The very next day the fever goes down and 4 days after the operation Daniel can breathe again by himself. The tube is removed. The following days Daniel has a rapid recovery: On May 2, he is transferred to the normal pediatric station across the street and on May 8 we can take him home! What a difference to the first shunt operation. Daniel is much less cyanotic from now on, and also the cramps do not continue anymore. Still, because of the possibility that the anomaly in his brain was the trigger of them, Daniel takes a mild drug, Luminaletten, to prevent them. In retrospect I think the reason for the cramps was that when he cried, the pressure of the ribs would cause the shunt, that is half clogged, to close completely. Out of sheer oxygen lack he would then apply even more pressure to the lungs and the surrounding tissue, and thus keeping the shunt closed by outside pressure.

The following weeks we have another meeting with the doctors at the clinic, where we speak about Daniel's future. At that time, the doctor who were so optimistic about Daniel all the time, the one who was so vehemently against issuing a disabled certificate suddenly tells me
"Well, of course we can try as much as we can, but you have to understand that our possibilities are limited. You can be happy that Daniel is still alive. When I see him in his present condition, I have to say that the chances for him to become old enough to be enrolled in school is 50/50."
Wow, hearing this is a shock for me. Nobody told us THAT! We knew that Daniel was severely ill and handicapped, but being so ill that he wouldn't survive the first 6 years was new to me.
Well, as with all information, this was valuable, too. Now I knew where I should put my priorities! I like my profession. Since I was a junior high school kid, I wanted to study chemistry. Science had its fascination since elementary school, a time at which I would read 2-3 books per week. I consider myself lucky to be able to study what I enjoy most. I also have the best chances to have a future job which is interesting and fulfilling.
But from today all of this is not important anymore. Important is only the well-being of my child and of my wife. We know that Daniel is in good hands in Mainz, and in even better hands from heaven above. But I know that I have to spend as much time as possible with him.
Whatever the future holds for us and Daniel, from today on I know that we live on borrowed time with Daniel. Nothing, not the slightest triviality can be taken as normal, or taken for granted.