Kaitlyn's Korner: Recovering in the Pediatric Intensive Care Unit (PICU)

Wednesday, February 9, 2011

Recovering in the Pediatric Intensive Care Unit (PICU)

We are now with Kaitlyn in her room in the PICU. She is heavily sedated and on a ventilator to control her breathing. It seems like there are monitors and tubes everywhere. It was really upsetting seeing her for the first time connected to all the monitors but we are so glad that they did the surgery laproscopically and not a completely open procedure. We aren't able to pick her up or do anything other than talk to her, touch her and love on her. The nurse said that she can probably hear us but it's like she is in a dream state and not completely aware of what's going on, which is a good thing. She stirs occasionally and has fluttered her eyes a few times but is definitely not awake at all.

You can see the small incisions where they inserted the laproscope and instruments. The green piece is where the G-Tube is.

5 comments:

UnknownFebruary 9, 2011 at 8:41 PM
Sweet baby girl.......Sending you lots of love and prayers for her quick recovery. xoxoxo
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Sara ScottFebruary 9, 2011 at 9:19 PM
so sweet.. and so scary.. thoughts and prayers are with you :)
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UnknownFebruary 10, 2011 at 12:25 AM
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UnknownFebruary 10, 2011 at 12:54 AM
Thats a scary thing to go through. I wish kaitlyn a speedy recovery, I'm sure the procedure will be a huge benefit in her future. My thoughts and prayers are with your family. Blessings from my angel to yours

Tessa & Tehyez
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UnknownFebruary 10, 2011 at 1:04 PM
My thoughts and prayers are with your precious baby girl and her amazing mommy and daddy! Lots of hugs, Jenny (Mele) Kramer
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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.