Daniel's Story Chapter 2
2.3. On the normal pediatric station
To both Yuki's and my surprise, Daniel is transferred to the normal pediatric station the next day, only four days after the operation. Today, April 17th, is also Yuki's birthday, so we have two things to celebrate. His situation is stable enough, the experts say, to be transferred, so a small procession of doctors, nurses, Daniel in his tiny bed and we cross the small road between the barracks and the pediatric ward. His new room is very spacious and he shares it with three other children.
The first day at the regular pediatric ward is a shock for us. We got used to the fact that a nurse is in Daniel's room nearly all time. Now, when we have a question or when a drip runs out and the pump signals a change of syringes, we have to wait until somebody comes. On intensive care I witnessed once that a nurse says in a fairly normal sounding voice "Can somebody help me?", and another nurse that just was doing something at Daniel's bed threw her blue overcoat over her shoulder and ran outside. Five seconds later she was in the next room giving a hand to the other nurse.
"What a team", I thought. They are doing a great job and sometimes a human life may depend on those 5 seconds.
But here on the normal station, everything is a little bit slower. Call a nurse and be prepared to wait one minute! But on the other hand we are thankful, that Daniel is now in a situation where he can wait for a minute!
Daniel is getting more and more milk everyday. His additional intravenous 'diet' also changes. He needs vitamins and fat, so various colorful and sometimes cloudy fluids are pumped into his veins. He needs to take oral medication, too. Two drugs that enhance his kidney functions, and digitalis to strengthen his heart.
"Why two drugs for his kidney?", I ask.
"Because one tends to retain too much potassium in his blood. Thus the second one is one that retains too much sodium, but removes more potassium." is the answer. This is again a time, when I think how complex our wonderfully functioning body is. When I inquired so impertinently about the switch operation, I did not realize that Daniel's underdeveloped left heart ventricle would not have been strong enough to pump blood in his little body. The heart just would have stopped beating, if the doctors would have tried a switch OP. I realize that I still have to learn a lot of things, but I am willing to do so.
Two days after the operation, when he was still in the intensive care unit, he could breathe by himself and didn't need the breathing machine anymore; but instead of it, he was placed in an oxygen tent. This tent he still needs at the normal station, too. Inside of the tent the air is fairly hot, since it can't circulate. An ice pack at the rear side of the tent helps to keep the temperature down. But now we have to slip our hands through a small space between the tent and the bed, in order to hold his hand. Slowly, day by day, the oxygen concentration is lowered to a natural level. Then, on April 19, he does not need the tent anymore. Only one day later the tube for the infusion of the milk is removed. For the first time, he experiences the taste of what he previously only knew from the sensation of a full stomach.
But the most natural way of feeding has still to wait. He may drink from today, but he is still to weak to be breast fed. We can see that drinking is exhausting for him, since he sweats a fair amount when doing it.
How exhausting will be life for him? Will I ever be able to play soccer with him? Can he walk, or will he need a wheelchair? Questions like this are in my mind many times.
On April 25, two weeks after his birth, Yuki starts breast feeding! Since a balance sheet of his intake and outtake is kept beside his bed, Yuki has to weigh him before and after feeding him, so that the doctors know how much he drank. Yuki and I visit him everyday. Either I go see him before or after my work, or I use the lunch break for a short visit. Sometimes I see him three times per day. Yuki commutes from our apartment either by bus or by bicycle. The nurses are very helpful, but one of them told us "He will become really spoiled if you continue to hold him so many times."
The healing process continues. Everyday we can see progress in his condition. On April 27, the last infusion is removed. On April 29 the stitches are taken out. It hurts, so he cries. The next day, the last connection to a monitor is removed. He doesn't need the ECG electrodes anymore. He is free!! We now can walk around with him, holding him in our arms, and play.
Daniel is taken to student lectures. He is such textbook case that the doctors introduce him to the students as a typical example of a "blue baby". One time I accompany him, on the request of the doctors, so that the students can get a first hand report of the parents side of the "problem". But I use too many medical terms, so the Professors seem to be disappointed that I do not play the role of a "textbook parent".
After all the improvements there is one thing that depresses us. Daniel's wound does not heal. The last 2 cm of the wound does not close, and the doctors think about stitching it again. This sounds easy, but for this, the already-healed edges of the wound have to be cut away. That means pain for Daniel and still longer time in hospital. We are depressed. The doctors decide to wait.
Another thing that is peculiar about Daniel is something we thought is perfectly normal. We have seen that babies of other families sometimes "vomit" after being fed. Daniel does that, too. At least once a day he vomits. After being breasted, this is really a pity, since Yuki has to feed him again. It is annoying when he vomits after been given medication. Since we do not know how much of the drug has already been absorbed into his body, we are not allowed to give the medication a second time, because of the risk of an overdose.
Finally, on May 18 the doctors tell us that we can take Daniel home that day! They show us how to treat the still open edge of the wound with cream and how to keep it sterile. That day, 5 weeks after his birth, Daniel weighs 3330 g, only 140 g more than his birth weight.
At the final check of the doctors I ask the head doctor of the station, if he can suggest a capable pediatrician for us, since we have to go to check-ups every month.
"I am sorry, but I can't give any suggestions. This is against our house rules because it would interfere with equal competition."
"I understand, but you see, we do not know any pediatrician in Mainz, but we need someone we can trust. If we go to a pediatrician whose only daily routine is to prescribe drugs against colds, and give measle-shots, we feel insecure."
Then I have a good idea "Okay, let me rephrase my question. If Daniel would be your child, to whom would you go?"
The doctor understands this loophole and suggests a pediatrician in downtown Mainz where chronically ill and handicapped children are treated on a daily basis.
With this, we leave the university hospital, after we made an appointment for the next check-up in June.
Finally, we have Daniel home! He sleeps for the first time in his own bed. We change his pampers for the first time on his dressing table. A tense moment comes when I change the sterile bandage of his still open wound. But I can do it, without hurting Daniel. Maybe that is the moment when we fully understand that Daniel is now part of our life and that we are 100% responsible for him. No nurse to ask, no doctor who is at hand immediately.