March 2019

New drain put in

To relieve some fluid around his lungs, Naaman has a drain put in on the right side of his chest.  The fluid puts a strain on his lungs, kidneys, liver – everything – so getting the excess out should help him heal. Overnight a fleeting fever, and another today when he got platelets. It’s not […]

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Update and PICU Life

Hello, Team Naaman. Our family is grateful for the prayers and support that has poured out this past week especially. He is one loved little guy. He still struggling to find the balance of fluids to help him heal. It feels like one minute up and one minute down, but his liver doctor just came

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Fluids, fluids, fluids

We will continue to post daily updates as best we can during these critical times for Cheeky so that family and friends can help support our favorite little Hulk. Today he wasn’t nearly as restless as the day prior, when he was chomping down on his breathing tube. His ammonia levels, while elevated are still

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Long stay in the PICU

Naaman went to clinic Thursday for more platelets; however they decided to admit him because he shouldn’t need platelets that many days in a row (Sunday-Thursday). After one sleepless, long night, he wasn’t eating or drinking and his belly had become huge and hard. We got switched over to the PICU (pediatric intensive care unit)

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Quick update

Cheeky was supposed to have today off, since he just had transfusions yesterday at the hospital. However, he had rashes of tiny red dots (called petechiae), clumps of blood coming out of his nose, and a trace of blood in his diaper.  Needless to say, we went into clinic and his platelets were even lower than

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