Seattle, WA, USA

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update 1/26: home bound

January 27, 2017

 

We received the wonderful news that we were able to continue to care for Hudson at home. This is a little different than being 'discharged' from the hospital because we (Morgan and I) will continue to provide a heightened level of care for Hudson but we now have the opportunity to do it from home as opposed to a hospital room. 

 

We were sent home to work on two things: manage and grow. 

 

 

Manage - We are now running a small pharmacy out of our home. All of these medicines will help keep Hudson's body healthy enough for transplant. We must administer the medicines via the feeding (NG) tube that Hudson was sent home with. 

 

 

 

 

Grow - It is essential for surgery that Hudson gains weight. Although the scale is rising, most of it is attributed to increased fluid retention. Biliary Atresia makes it nearly impossible for babies to gain fat or get the nutrition required for the body to grow. Eventually Hudson will plateau and stop growing, this will increase the urgency for a transplant. 

 

Hudson was sent home with an NG tube. Morgan and I were both trained on how to feed, manage and clean the NG tube as well as administer medicine. This will be the primary way Hudson receives his food until he plateaus or he is unable to keep any food in his stomach. Why is he unable to keep food down? A couple of reasons:

1) Hudson was born with an abnormally large and oddly shaped liver. A normal liver is on our right side and small portion of our abdominal. Hudson's liver stretches all the way across his right side, across the middle and over to the left. Most of his abdominal cavity is liver. 

2) With organ damage, your middle section begins to retain fluid. 

3) As the liver begins to fail, scar tissue makes the liver grow larger (swell) and harden. 

 

All of these things put pressure on and squish the stomach so vomiting and not being able to consume much is very common. 

 

Once he is unable to keep anything down (for the above mentioned reasons) we will switch him to receiving food via an IV. This is called TPN and is connected to a central line or "one of the big veins" as we so eloquently say in the Hill household. 

 

Our plan is to continue to make Hudson as healthy as possible and hopefully gain fat by our next clinical check up with the Transplant team next Thursday. Fingers crossed that we have an uneventful weekend and Hudson continues to be the amazing happy baby that he is! 

 

Please send Hudson greasy, fat thoughts! 

 

 

 

 

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