Kaitlyn's Korner: Might be going home!

Wednesday, April 13, 2011

Might be going home!

Look at that smile! Kaitlyn is still really congested and wheezing but she did great last night off of oxygen. She only dipped below normal oxygen concentration levels for a few seconds and then went back up. She didn't need any oxygen!

All of her cultures have come back negative for any bacterial infections so we are discontinuing the antibiotics. We still haven't gotten the results from the viral test but that won't change anything.

We will hopefully be going home with a suction machine for deep suctioning of her nose, which will be SO great for her. We are also trying to get a pulse/ox monitor and oxygen for her when she needs it.

As you can tell from the picture, she is pretty much back to her normal self, just congested. We are really hoping to go home today. That would be so wonderful. We miss our little Cole-bug!

No comments:

Post a Comment

About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.