Seattle, WA, USA

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Month of Milestones

October 6, 2017

Stats

Weight: 8.15Kgs (or almost 18 pounds for you non-metric folk) 

Med count: 5

Number of tubes: 0

Frequency of clinic visits: Every 2 weeks (previously it was every week) 

 

September was a month of waiting and observing. Hudson's liver enzyme numbers were slowly creeping up week over week so the doctor's scheduled a liver biopsy just to be cautious to rule out rejection or infection. The day of the liver biopsy, Hudson's liver numbers had gone down significantly enough that the doctors were confident we could cancel the biopsy (phew!) We went home thinking we had dodged a bullet.

Fast forward two days and Hudson decided to give us a scare and spike a fever of almost 102 degrees* - a temperature that landed us in the ER and in the hospital. 

It turns out that Hudson's increased enzymes were directly linked to the bug that he had picked up. Bear with me on my attempt at explaining the connection... 

Since his immune system was so highly suppressed, his body didn't show symptoms to us (i.e. temperature, running nose, cough, etc...) until later on when his immune system finally 'kicked in.' That is why his liver numbers had increased so much earlier than when he began appearing ill.  

*Before any parent thinks, "102 isn't very high for a kid," please know that transplant families are instructed to call the doctors if a the child's temperature goes over 100 degrees because things can go down hill fast. 

 

 

I got no strings (tubes) to hold me down

I am sorry that you now have a song from Pinocchio in your heads.  

While admitted in the hospital, the doctors determined it was time to remove the bile drain and the NG tube. We were required to stay an additional day for observation and complete a round of IV antibiotics. Hudson handled the removal of the tubes like a champ and as much as we loved visiting with our nurses and transplant team,  we were excited to bring our son home tube-free. 

Since the tubes have been removed, Hudson has acted like an entirely different baby. His energy level is higher than we have ever seen, he is eating and drinking incredibly well and you can see him learning and taking in every bit of the world around him. 

 

Going through the medicine cabinet

We are now almost exactly three months post-transplant. This is a huge milestone in the transplant world because this means it is time to stop taking some meds and reduce the dose of others. We have been able to discontinue at least six of the medications that we were sent home with. 

The first three months immediately after transplant, Hudson's immune system was the most suppressed - meaning his immunosuppressant medication (Tacro) dose was the highest. As we approach our three month milestone, we are able to reduce his Tacro dose, meaning his immune system will be a little less suppressed. Right in time for flu season - SIGH.  I am beginning to sweat and have an anxiety attack just typing that.

 

 

Cheers to that 

 In a couple of weeks, (twenty-two days to be exact) Morgan and I can brag and toast to the fact that we have kept a human alive for a whole year! In lieu of gifts, we are putting together a box of letters for Hudson to open when he turns eighteen. Morgan and I debated mentioning this to all of you because we didn't want it to be seen as an assignment or obligation. You have been with our family through all our challenges and triumphs therefore we would like to extend the invitation to anyone who would like to participate. 

 

Some ideas for the box can include a letter or card to Hudson (either present day Hudson or future Hudson), a story, a picture or pieces of advice. Please sign and seal whatever you provide. If you are interested in doing this, please email me (sarbaughj@gmail.com) and I will provide further detail.

 

 

Speaking of cheers...

 Between our doctor appointments and hospital stays, Morgan and I have been lucky enough to catch up with friends over the past few weeks. We even walked on the wild side and got a babysitter so we could celebrate Oktoberfest with friends. It has been refreshing and energizing getting to experience little bits of 'normal' life.   

 

 

Thank you 

As we connect with other transplant families and hear about their experiences and stories, we are constantly reminded how lucky we are to have our amazing support system. Thank you for your continued support and love. There is not a single second that we take it for granted. 

 

Cheers!

Jordan, Morgan, Hudson, Dude and Jax 

 

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