Irrelevant Information for Relevant People

After more than 3 months of living in a hospital, Sebastian has finally come home last Tuesday, February 21st. For those that have not been updated of the recent developments, this post will be a summary of the last month and a half.

Sebastian was released from the IC in Amsterdam just before Christmas. He was transferred to the Hospital in Delft were he was admitted on the high care unit. Here he remained in an incubator for a few weeks. The second week of Januari he finally moved into a bed and quickly ditched his oxygen requirements. He was growing nicely and we were preparing ourselves for his homecoming. Then on January 20th, the pediatrician wanted to have a talk with us. He told us that they were concerned about Sebastian’s blood results. His levels of jondice had actually increased in the previous weeks. Since it was the conjugated version, they could not remedy this using photo therapy. This indicated that there could be problems with his liver. On top of this they saw some very young white bloodcells in his blood, that are usually only belong in the bone marrow. He told us that our regular pediatrician would meet with us again after the weekend. I gues at this point it had not really sunk in what this really meant.

Tuesday afternoon we had a meeting with our regular pediatrician, and here the word leukemia was mentioned for the first time. I don’t think we can possibly ever feel worse than at that exact moment. We did not hear anything else after this. A couple of days and lots of crying later we had another meeting with the doctor and she explained to us that leukemia was not the only explanation for his symptoms. It almost seemed that there were two very rare deseases, completely unrelated to his premature delivery, causing his symptoms. She explained that they were not equiped to perform the necesary tests at the hospital in Delft.

So, on Thursday, January 23rd, Sebastian was transferred to the academic hospital in Rotterdam which, ironically, is the hospital in which he was born. The next two weeks put both of us very close to the edge of insanity. Even though very early on the doctor in Rotterdam ruled out leukemia, since the young white blood cells had dissapeared. However, there was still the unexplained problem with his liver. His symptoms could have been explained by hepatitis, genetic disorders, metabolic diseases, virus infection, etc… The list was very long and they were attempting to tick them off one by one. At a certain point we were told that they still had not located to source of the problem and that the only way to find out for sure was to perform a liver biopsy, however he is still way too small for them to do so.

Miraculously, one day his billirubin levels started dropping. 3 Days later his levels dropped again. At this point the doctors in Rotterdam decided that for everyones (i.e. insano Laura and Pascal) Sebastian might as well go back to the hospital in Delft. So on Friday, February 17th, Sebastian got to take his 4th ambulance ride, back to Delft. Here he immediately was put in a crib in his own private room. he was now very close to being able to come home. The only thing keeping him in the hospital was that he was still getting some of his food through a feeding tube. Two days later he managed to eat all his meals by himself. The next day he was scheduled to receive his first set of immunizations so they moved him back on the monitor in a very busy room with lots of other babies. The next day we found out that one child had contracted the very contageous RSV virus. So we had to wait for a stool analysis to see if he was one of the lucky children to get infected. One day later we found out that had finally escaped something and he was moved back to the smaller room.

Then finally the day had come. On Tuesday, February 21st, Sebastian was finally able to come home. We still do not know what had caused his liver problems, but his symptoms are gradually dissapearing. We now have to go back to the hospital on a bi-weekly basis for his check-ups.

Up till today he has shown signs of Colic and has been sleeping very little, but he seems to be getting better evry day. We have not slept a whole lot but that simply does not matter. We are probably the happiest people on the planet at the moment.