Seattle, WA, USA

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To bili or not to bili

July 19, 2017

I have had the fear of writing this update for a couple of days. I have this anxiety that as people read and understand our progress, the question of "what does this mean and how long for recovery?" will inherently come up and I won't have an answer for you. I can come up with averages or a range of times it has taken others but I am finding that the more expectations I make, the more defeating it is when we don't meet them. I am a little embarrassed to admit that I am human and have allowed some of our defeats over the last couple of days effect me. I know I will be fine and this is just a small portion of the rollercoaster but I feel this responsibility to all of you to explain our (my) absence. Below are the main things we have been dealing with since our last update (Thursday): 

 

Trevor is healing wonderfully. He is getting plenty of rest and able to walk around for a good amount of time each day. He has been able to visit Hudson almost daily which has been pretty special. Trevor and Charlie (Morgan & Trevor's dad) will leave Seattle on Friday. 

 

Linda (Morgan & Trevor's mom) left Seattle today to go help Katie, Molly and Claire throughout the rest of the week. Dude and Jax already miss their cuddle buddy. 

 

 

Doctors were able to take Hudson's breathing tube out on Sunday - He is starting to look a little more like himself! 

 

 

Between Sunday and Monday, Hudson's bilirubin spiked to a higher level than it was pre-transplant. His eyes turned yellow and he became slightly jaundice again. This led the surgeons and doctors to suspect either a bile duct leak or block. We spent yesterday running tests and getting lots of images (via ultrasounds and a HIDA scan) The images showed that Hudson's bile duct is enlarged which indicates an obstruction most likely from swelling. We were told that doctors wanted to see if the swelling would go down on its own. 

As of today, Hudson's bilirubin continued to increase and there is a good chance that if his bilirubin increases tomorrow, they will bring him back to the OR, remove the obstructed or narrowing duct and reconstruct a new one. The wonders of science these days, right? 

 Anyone that has dealt with a surgery understands the delicate balance between pain management and sedation. Babies experience this as well. We are in the process of finding the perfect balance between making sure Hudson is comfortable but not too sedated.

If he is too sedated, it negatively affects things like his breathing, requiring us to give him additional oxygen which in turn fills his stomach with air which ends up causing more pain. The pain medication virtually stops your digestive system which again, causes more pain. It's a vicious cycle. I have never wanted a child to fart or poop more than I want Hudson to. Words I never dreamt of typing...

 

Overall, Hudson is doing alright. We have a little bump in the road but the transplant team told us ahead of time that there is always at least one complication or set back. I hate telling people they were right.

Stay tuned for more and again, thank you for the continued thoughts, love and support. 

xoxo,

Jordan, Morgan, Hudson, Dude and Jax 

 

 

 

 

 

 

 

 

 

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