Naturally, we talked to the doctors, both before and after the operation. The cardiologist (not the surgeon, obviously) came out during the operation a few times to discuss progress. The actual procedure (moving the pulmonary veins so that they would enter the heart in the right place) only took about 1 hour, but they needed a lot of time to stabilize him. And then afterwards, they observed him for an hour or so as they took him off the heart-lung machine. In the end, the doctors decided that they were not entirely satisfied with the way he functioned on his own and they decided to put him back on it. That way, his heart and lungs can have a rest while Peter recovers from the operation and gets some strength.
After the surgery, the surgeon told us that the procedure as such had not been very hard. There was more room to do it than they had anticipated. The doctors now worry about his recovery from the operation (after all: he was only 3 days old!) and a possibility that the veins leading from the lungs to the heart may have some other defect than just this wrong connection. We will have to wait longer (perhaps much longer) to get more clarity on that second concern. They expect that Peter will have to remain in the hospital for another month.
The ECMO (the name for the heart-lung machine) is a scary contraption that looks more complicated than flying the space shuttle. Two nurses were constantly busy adjusting something on Friday night after the surgery. We were told that we should use the time while Peter is on ECMO to be at home as much as possible because his condition is very unlikely to change dramatically. That way we can be a little rested when, later in the week, the doctors will try to take him off the ECMO. We will probably spend whole days in the hospital then, as it will likely be touch and go for a while.
On Saturday, we went to the hospital only for a brief time--Betsy, Daniel, Anita and myself. We arrived around 3:30pm. Peter looked a lot better than expected. The nurses had warned us that patients on ECMO often puff up quite a bit as a result of retaining fluids. But we could hardly see anything. The nurses also were much calmer than directly after the operation. They had obviously stabilized him and he needed hardly any active attention. This was the first time that Daniel got to see his little brother. He seemed little interested really, but in fairness, he was majorly sleep-deprived!
Betsy and I feel greatly blessed with the many offers of help from many, especially from people in church. Food is offered from all sides, as well as other types of help. We are glad that Betsy's mother Anita is with us.
On Sunday, Betsy and I went to the hospital alone for a few hours. He continues to do well and also looks pretty okay (as long as you can look past all the tubes, etc.). I (Michel) was lucky enough to see him wake up briefly. I didn't even know that that was possible, even to the extent that he really woke up. Yet he really did open his eyes (somewhat sleepily, but nonetheless) and wiggled his armes and feet quite boisterously. I am sure he saw me. Betsy, unfortunately, was away at the time and missed it. After 10 minutes, the nurses made him go back to sleep, afraid that he might do more harm than good, though they assured me that it was healthy for him to move about a little. It helps him get rid of fluids.
A little later in the day, we talked to the nurses on the phone. The surgeon had come by and he had adjusted the ECMO to about 80% capacity (it had been 100% before). Apparently, he was responding well and we hope that he continues to stay at that level during the night. It is a good sign, but there is still a long road ahead.
Finally, here are a number of pictures of Peter.
(Also visit the Dutch version of this blog: vanderhoekpeter.blogspot.com).
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