Kaitlyn's Korner: Hospital Day 3

Friday, February 11, 2011

Hospital Day 3

Kaitlyn is doing really well today. She was taken off of oxygen and her IV. She still has monitors for her heart rate, breathing rate and oxygen concentration. But the tubes and cords are slowly disappearing! As far as the G-tube, we have been told that the surgeon doesn't want to start feeding her through it yet but we can administer medication through it. They just want it to heal up a little better before we start the feeds. She was able to drink some Pedialyte this morning through her bottle and later today she was drinking Pediasure, which is awesome! We were worried that there might be some pain from the Nissen with drinking bottles but so far so good. Since she isn't sedated anymore and her pain medicine has been slightly decreased, she is very aware of what's going on around her and lets us know when she's in pain. When she is on the medicine, she is very content and plays with toys and is interested in her books. Today has definitely been busier for us as parents since she is awake more and needs more attention from us. We are able to hold her now and are able to rock her in a rocking chair which is really nice for both her and us. We have to be extremely careful when we pick her up and move her since her belly is so tender. Just changing her diaper is difficult since you can't just lift her up. She also has a lot of swelling from all the IV fluids and blood products that were given to her. I'm sure the swelling also adds another layer of discomfort. Otherwise, she is doing really well. We couldn't be happier with how things have gone so far. We are still in the PICU, only because the hospital is so full that they don't have any regular rooms for her to be transferred to. We still anticipate being at the hospital for about a week. She still has a lot of recovering to do and we have a lot of learning to do on how to use the G-tube. It's a whole new way of life for her and us.

Watching a video and playing with toys!

So happy to be able to hold her again

Much happier parents now that Kaitlyn is feeling a little better

Kaitlyn's first bottle since Tuesday night

1 comment:

AnonymousFebruary 11, 2011 at 7:32 PM
That's great news...and so good to see her in your arms!
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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.