We just got home. The doctor said things look good for now. We have been told what to watch for over the weekend. Everyone is preparing for the possibility of a surgery on Tuesday or Wednesday if we have to put the tube back in. For now, it’s time to rest, pray and wait.
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?
Today marks the anniversary of Sophie’s liver transplant. It’s been 3 years since a gracious family gave the gift of life during their most difficult time. It’s always hard to express the feelings this day brings, so I thought I would share the journal entry that I wrote during my morning quiet time.
Today’s prayer journal entry –
“Thursday May 22, 2014:
Thank you for life. Today, I’m reminded of how scared I was 3 years ago as Sophie went back with the surgeons for her liver transplant. Being told that this ‘might‘ work, but if they didn’t try it would be fatal. Lord, you know the intricacies of her body and how complicated things are, but they are not complicated to You. You knitted her together and You guided the doctors hands and ultimately You chose for the process to work. Thank You! A hundred times, thank you.
There is a very special family that will always feel a sense of loss during this time. Lord, I pray that in time you can turn their morning into dancing. Only You can bring healing, peace, and comfort to their souls. God bless this precious family. Let them know that you bring comfort. That some how, some way, they can feel honored that their sacrifice still lives on and plays happily in my front yard. What a miraculous gift. What a precious blessing. What a divine connection. I am forever grateful. God bless our donor family. ”
Nothing!! Yay! So I haven’t been up to date. And I’ve had some people ask what’s happening. I apologize for falling behind. But we have had a nice quiet summer. No changes. No updates.
Lil’Sophie (who’s not so little these days), had her typical-every-4-month bile stent change surgery a couple of weeks ago. All went smoothly as planned. Hopefully, she won’t need anything again until January. She has some follow-up appointments coming up in October.
Other than that, she’s back to school for half day mornings and loving her teacher and friends….
So it’s been a while since the biopsy and it’s taken almost this long for the team to come to a conclusion. The conclusion IS – confusion. Basically, they’ve decided there was not enough data to tell what’s happening in her liver. The biopsy tissue was taken close to her stent tube. It’s clear her body is slightly angry with her stent tube at the moment, so that may have provided false information. The team has decided that we will continue as ‘normal’. I will take her early April for routine labs. They will closely monitor the liver numbers. If they are still elevated at the next scheduled stent change, they will redo the biopsy in a different location for a more accurate reading. So until then, we’ve all decided she’s not experiencing liver rejection (her labs this week showed her numbers beginning to trend back down). Thank you Jesus! :-)
Regardless of what the numbers say, we’re just happy that she looks and acts this healthy.
Sophie did well during her procedure. The interventional radiologist replaced her bile stent tube with a fresh one and took a liver sample to send off for tests. We will know the biopsy results possibly Friday or early next week.
Sophie woke up from anesthesia “fit to be tied” but eventually calmed down once she was allowed to have milk. The little trooper had to lay still in bed for 6hrs. We were discharged late last night and slept in our own beds! (Yay! What a blessing.)
Today Lil’Sophie has been climbing and playing like nothing ever happened. We are so thankful for a smooth procedure. Now we just wait for results. :-)
We’re taking Sophie for a surgery procedure today. It’s only been a month since the last surgery but her liver numbers are going up and the team has been attempting to investigate. She will have her normal bile stent change (early) to see if that might be the culprit. While she’s under they will take a liver biopsy to check for rejection. Outwardly she’s been showing NO signs of rejection but her lab draws have revealed a problem. Join us as we pray that the bile stent change will be the ‘fix’ needed at this time. Thank you!!