Aleksander Johnsrud

Aleksander was born 3 of Dec 2003. He was a normal, healthy kid just like any other kid at that time. In September 2004, he had a cold, and he had an ear infection. He got antibiotics for the infection, but nor the cold or the ear infection did go away. We also noticed that Aleksander had labored breathing. He really struggled breathing during sleep. This went on for several months, we went to several doctors, but none of them could find anything wrong with him. Until June 2005, when Aleksander had adenoids removed from his nose. The cold stopped almost immediately.... But the labored breathing did not stop at all, in fact, it got more intense then it had ever been before. So we videotaped Aleksander when he was asleep, and got our doctor to watch the video. He informed us that this was not an unusual way to breathe, even for a kid 20 months old..... But since we were so insecure and worried if Aleksander would not wake up one day, he sent us to a kid intensive unit at the hospital here in Oslo.

When the doctors did see him sleeping the first night, the only thing they said was: "It was a good thing that you came to the hospital with Aleksander, because this is not normal at all..." So Aleksander had a lot of tests done, and after a few days, the doctor found out that he had severe bronchomalacia, treacheamalacia, laryngomalacia and a deformed epiglottis. In fact, the doctors here in Oslo had never seen this before, so they didn't exactly know what to do with it. They are used to babies having on or the other of the malcies, not all of them at once.  Nine days after he was admitted to the hospital, he got his trach.

Aleksander accepted the trach almost immediately, it went great for the first two weeks, but then some problems occurred... One night I got a call from one of the nurses who had Aleksander. She said that Aleksander had stopped breathing after he woke up in the middle of the night. Aleksander had been uneasy; he was crying and was not himself. And suddenly he stopped breathing. They did get him back, but they did not know why he stopped breathing. This happened five times that weekend, until the doctors figured out that the trach was too short. Aleksanders trachea collapsed beneath (or under) where the tube was. So they actually had to make a temporary tube for him that was long enough. After he got that new tube, everything has been OK.

Aleksander is still sleeping at the hospital; we are now waiting for a tube to be made for Aleksander in the USA, specially made for him. Because there are no trachs long enough to fit Aleksander made in Europe. He will be sleeping at the hospital until we will get the new tubes....whenever that will be.

Aleksander & Mum

Sturle Nilsen, Aleksander's father
http://home.broadpark.no/~sturlen/ (in Norwegian!!)