I can’t believe how much time has passed! Sophie has been living a ‘fairly’ normal life. She is 5, goes to kindergarten, loves life and people and well… just about everything!!
On the medical front, she has been having routine surgeries every 4 months to change a stent tube that is acting as a bile duct path going into her liver. She has blood drawn every month to make sure her liver is happy. In July, she had a hole in her heart patched – you can see a video about that by clicking here.
What’s next? Well, she is having a routine surgery again tomorrow. We felt like we should tell you about it, as it’s a really important step for us.
When Sophie received her precious gift of a liver from her organ donor family, the primary bile duct in that liver went into shock during the transplant process and never recovered. Sophie’s liver team came up with the plan to put in a stent and basically create a new bile duct in the hopes that eventually the stent (tube) could come out leaving a new permanent pathway for the bile to flow. For 4 years now, Sophie has lived with a tube hanging out of her liver (and body) and she has had to have it replaced surgically every 3-4 months. If this stent procedure has been successful there will be no more need for replacement tubes, ending the surgeries every 3-4 months and Sophie could begin to live a normal life.
Imagine if you will – ‘jello’ as Sophie’s liver. The surgical team has put a ‘straw’ through this jello creating a pathway for bile to properly drain. The hope is that over time, scar tissue has developed around that ‘straw’ (stent tube) so that once the tube is removed, the scar tissue will hold the pathway open and the bile will drain as it should. However, back to our jello analogy – removing a straw from jello can result in the pathway hole still being there which is what we are hoping for! Or the pathway could slowly collapse on itself and close up over time, putting Sophie at risk of losing her liver and once again endangering her life.
Tomorrow and the days ahead:
The liver team is unsure how all of this will play out. Of course, EVERYONE is rooting that the pathway will stay open FOREVER and all is well. Several years have passed, and it’s time for us to see if this method of treatment has worked.
We ask that you stand in prayer with us that Sophie’s bile duct will stay PERMANENTLY open, for days and years ahead. That this was the final solution to making her liver transplant a success. We are praying that this is the beginning of a new life for Sophie – that she can bathe normally, and go to pools, and waterparks and participate in all the fun stuff that she’s been restricted from all of these years. And more importantly, finally bring an end to her life of surgeries every 3-4 months.
We thank you for all the prayers and encouragement you send our way. We are truly grateful and feel incredibly blessed.
We will update as we work through this next phase of our lives.
Sophie’s bile stent tube. She’s had this for over 4 years. We flush it daily with saline to help keep the bile pathway clean and open. Sophie cries when we talk about it being removed, to her this is normal and she doesn’t want it to go away. She doesn’t remember life without it and doesn’t understand what exciting adventures she is missing out on because she does have it.
Random fun pics, Sophie is becoming quite the Star Wars Fan! I wonder where she get’s that?