Seattle, WA, USA

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Autopilot

July 30, 2017

Eight days since our last update and it has been another marathon week full of peaks, valleys and plateaus. 

 On Sunday we moved from the ICU to the surgical floor. This was a giant win as it meant one of the best words you can use in the hospital - STABLE.  Hudson's labs and images continued to improve so the doctor's and nurses tasked Morgan and I to "set ourselves to autopilot" for a couple of days until they could decide what the next steps were in terms of his obstructed bile duct (remember that last week he had a catheter and drain put in so the function of the liver is great and the bile is draining so there is no concern) Here is what autopilot looks like for our family... 

 

 

We received permission to walk around the hospital with Hudson and don't you worry, we walked with the best of them and put those fitbits to work. 

 

 

Trevor and Charlie made a quick appearance on Tuesday to officially be discharged from UW. They were able to stop by and spend some quality time with Hudson and enjoy some Seattle sun (yes, it does exist) 

 

 

Like a true Hill, Hudson has taken advantage of the in-room dining option and tried all kinds of new (solid) foods. New favorites include baked potato and mango. 

 

 

 

Since Trevor's liver is still a little big for Hudson, he is a little right heavy and tends to fall to the right. We worked with the OT/PT team here at SCH on methods and tricks to continue his development while inpatient and growing into his new liver.  

 

 

Hudson "isms"
  • He now has 2 bottom teeth. This has been both a joy and a pain - literally. 

  • Hudson has discovered a new love for sleeping on his right side

  • We have ourselves a definite morning person (this makes me incredibly proud)

  • Overall, he is genuinely one of the happiest humans I know!

 

 

Detour 

On Thursday, the Interventional Radiology (IR) team went back into Hudson's bile duct with the hopes that they could extend the catheter and drain into the bowels. Unfortunately, the swelling and scar tissue completely blocked the duct so they were unable to advance and dilate the duct. This gives us two options. Our first option is waiting a couple of days to see if swelling is the main cause of obstruction and try to advance again. The second option is to surgically go in and reconstruct the bile duct. The IR team thinks there is potential to advance in a couple of days so we can start with the first option.  Unfortunately, if the attempt to advance through the duct is unsuccessful, we have to go the surgical route. Either way, the surgeons promised us that Hudson will have a functioning bile duct before they discharge us from the hospital. So what now? Unfortunately (or fortunately depending on how you look at it) we go back into autopilot mode until mid-week when they can attempt to advance the catheter again. This isn't a speed bump, but more of a detour that will eventually get us where we need to be. 

 

My "Love Actually" moment 

...minus the whole airport scene.

Everyday I witness acts of kindness and each time I find myself having the same thought: despite all the madness, chaos and disagreement in the world, there are still good people out there and that makes me hopeful. I feel a little bit like Hugh Grant in Love Actually for saying that but that doesn't make it any less true.  

Our network of people - you guys - have been unbelievable throughout our entire journey and continue to amaze me. I carry a fairly large amount of guilt with me knowing that I have yet to thank each and every one of you personally for all you have done. Please know that the lack of response or 'thank you' from Morgan or myself is not because we are not appreciative. In fact, it is the opposite. To sit and convey the appropriate amount of gratitude we have requires time that we are hoping to have in the near future. You all deserve that. In the meantime, please know that I am reminded every single day of all your amazing acts of kindness. 

 

Hudson does the globe. 

I have been collecting all of the #freehudson pictures you have either sent or tagged us in. If you have been unable to take a picture of you wearing your #freehudson shirt, don't sweat it but when you do, we would love it if you sent it our way! 

Tag on FB (either Jordan Sarbaugh Hill or Morgan Hill) 

Tag on Instagram (@hudson.with.the.good.hair)

Email (sarbaughj@gmail.com)

 

#donatelife

What started out as an impossible journey has now turned into a passion. Not registered to be an organ donor yet? Visit the "Become a Donor" page on hillofajourney.com to learn more and register to be an organ donor. It's easier and quicker than you might think. It's like faster-than-scrolling-through-your-facebook-newsfeed type of quick. Take 60 seconds to click on the link and save lives.

 

 

We will update everyone as soon as we know which route of treatment we end up taking. Until then, we hope everyone has a relaxing and fun weekend. 

 

XOXO 

Jordan, Morgan, Hudson, Dude and Jax 

 

 

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