Kaitlyn's Korner: Upstairs

Friday, December 2, 2011

Upstairs

Kaitlyn's congestion has gotten worse since yesterday and she is still having a tough time getting comfortable. It is really difficult for her to take a nap which she desperately needs. I have brought her upstairs for the day since it is quieter up here and hopefully she will get some rest.

We have switched to a face mask for her oxygen instead of the nasal cannula since she is breathing through her mouth a lot. It is working really well. I don't think she particularly likes the mask but it keeps her oxygen levels up, which is good.

Hospice nurse Jordan will be here this afternoon to check on Kaitlyn and to administer her 2nd Rocephin (antibiotic) shot. They will listen to her lungs and give us an update on whether the congestion is spreading to her lungs or not.

Please pray for Kaitlyn to be able to get comfortable and rest and to not be in any pain. Thanks everyone!

3 comments:

AnonymousDecember 2, 2011 at 5:23 PM
Kaitlyn is in our thoughts and we are hoping that she is able to rest comfortably and not have pain.
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AnonymousDecember 2, 2011 at 10:24 PM
Thank you, Lord, for this precious child and family. You are glorified in them and their walk with you. Please continue, Lord, to hold Kaitlyn in Your arms and give her comfort, rest, and peace tonight. I pray also for the same for her precious parents . . .
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UnknownDecember 3, 2011 at 5:13 AM
I am so sorry to hear Kaitlyn's congestion has worsened. Praying the congestion subsides and Kaitlyn is able to rest comfortably. Praying for continued strength for you and Chip.
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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.