Seattle, WA, USA

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Foundations

September 9, 2017

Happy fall everyone! You know that feeling when someone asks, "what do you do all day?" and you get flustered because you can't even begin to list all the things? That is the best way to describe the past few weeks here. We have been completing a lot of mundane, repetitive tasks that will help build a solid foundation for Hudson's health in the future. I am happy to report that all those mundane and repetitive tasks have paid off because Hudson is doing very well. 

Stats 

Current weight: 7.74 kgs or 17.06 Lbs - 5th percentile (I highlight this because this is the highest he has ever been on the growth charts!) 

Current height: 74cm or 29.13 inches  - 12.9th percentile

Med count: 8 

Current Trolls movie count: 1,263

 

Quality Over Quantity 

This week marked the final week that we have to go to clinic twice a week and get blood draws twice a week! Starting next week, we will only be required to go to clinic and get labs done once a week. His liver enzyme numbers are stable and about where they would expect them to be given the time since transplant and still has the bile catheter. All of the sudden I feel like I can take on the world - maybe even tackle world peace -  with those extra 4 hours each week. 

 

Bag Boy 

Kind of like a ball boy but not really. 

On Thursday, Hudson will have a two-step procedure. The first step is called a cholangiogram. This is imaging of his bile duct to make sure it is draining correctly. If all looks good, they will proceed with removing the bile catheter.  We will have to stay in the hospital overnight on Thursday for observation but *should* be discharged on Friday. As much as we love the nurses and the doctors in the hospital, fingers crossed this is the last procedure for Hudson for a loooooong time.  

 

Champagne Taste 

It is our goal (the transplant team is part of the 'our') to get Hudson off the feeding tube ASAP.  He is doing very well with eating solids  and takes all his meds orally, however, he refuses to drink formula or other high calorie drinks orally. He simply hates any liquid other than diluted apple juice or water.  We have established that this is not a medical issue, this is purely behavioral - diagnoses: he is a fluid snob and stubborn.  

 

Love Lost 

As part of our mission of getting Hudson off his feeding tube, we have been introducing him to every high-calorie food out there. This started with dairy.

We began giving him dairy on Sunday evening (working with the team of nurses and doctors) and it changed Hudson's world. He loved cherry and blueberry yogurt and when we gave him shredded cheddar cheese, you would not have found a happier child at that moment. However, that was short lived. On Wednesday, Hudson woke up with a giant rash on his back. We added an allergy test to his Wednesday evening labs and he tested "extremely high" for dairy allergy. To put it in perspective, a "high" number for a dairy allergy would be a .3 - Hudson was at a .9. Looks like an involuntary Whole30 or Paleo diet is in our families future (okay, not the worst thing in the world)

 

Frozen In Time  

It has been and continues to be a strange concept to Morgan and I that there was/is life outside of Hudson and the hospital. While Morgan, Hudson and I were in the hospital, all the people in our lives continued to live their lives. People got married. Purchased homes. Moved.  Celebrated birthdays. All things they absolutely should be doing however, all those milestones in our friends and family's lives seem surreal to Morgan and I because life essentially stopped for us during those 40 days. I share that personal perspective with you all  in hopes that it helps illustrate that the reintegration into society is a real struggle and continues to pose challenges for our family. Despite being home, we are still working hard to understand and manage our 'new normal.' I doubt this struggle is unique to our family however, it is a challenge that has been very present in our lives since being discharged. As time passes and clinic visits get further apart, I am both eager and confident that our family will get our groove back. Stella style. 

 

Final Word

We hope everyone has enjoyed the transition from summer to fall and survived the beginning of school. I know I am looking forward to cozy sweaters, pumpkin spiced lattes (don't judge) and all the fall colors. This time of year kicks off a four month stretch of non-stop decorating here at the Hill household and I could not be more excited about it. We were not able to fully decorate and celebrate all the holidays last year since we were in the hospital most of the time so we plan on making up for lost time.

 Morgan turns the big 4-0 on the 16th and he could not be more excited, or more deserving, of a day free of diaper changes and responsibility. If you get a moment on the 16th, please feel free to shoot Morgan a little birthday love. Go Giants!

We will update everyone once we complete Hudson's procedure on Thursday or Friday. It goes without saying that we love and appreciate the continuous love and support from everyone.  

 

Cheers,  

Jordan, Morgan, Hudson, Dude and Jax

 

PS - GO BRONCOS! 

 

 

 

 

 

 

 

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