Meeting with Liver Transplant Team

Just the other weekend, I was driving around with three upset kiddos, sipping on a flat bubbly drink that I had left in my cup holder from the day before, desperately searching for some extra sanity. 

 It’s been weeks now of on and off crying.  The girls especially are feeling big feelings and all three of them have been struggling with colds.  I know these little tikes aren’t GIVING me a hard time, they are just HAVING a hard time….but knowing that truth doesn’t grant me the magical ability to function on a few hours of very interrupted sleep.  It’s been a little tough over here. 

On top of that, we have had a lot of big meetings covering some heavy medical topics the last little while for Veya, including a presentation to the transplant team and possibly another large surgery sitting on the horizon for her. 

So I packed up the kids and started driving around looking at everyone’s outdoor Christmas decorations. They all needed to take a quick nap, and my mind needed to find silence. 

Not even ten minutes into the drive they had all fallen asleep.  I began reflecting on how incredibly difficult this season of motherhood has been..as much as I try to adapt and chase joy filled moments, these last few weeks have pushed me to my limit and then some. 

I then had a thought about medical parenthood that forever has changed the way I see God.  When Veya was born she HAD to go to the NICU.  As much as I love her and want to live with her, staying in the NICU was necessary for her to have the chance to grow stronger and healthier.  Despite the fact that we have been separted, I was and am never far.  I knew most of her doctors and nurses by name.  Even now we know all the doctors and nurses in 7B by name and we will at times send visitors in my place to sit with Veya when I can’t physically be there.  I answered every phone call, day or night and took careful notes.  I spent time pouring over those notes trying to figure out ways to love her and help her through each health issue.  On top of that I would call in all the time for constant updates. 

I imagine that God’s experience with our earthly journey is pretty similar.  As much as He loves us and wants to live with us, our time on earth is necessary for us to have the chance to grow stronger and mirror more of Him.  Despite the distance, He is never really far.  In fact, He works hard to be as close as He possibly can to us.  He knows our friends and family by name and sends earthly angels our way to be there physically for us.  I imagine that God has His own notes about us that He pours over as He brainstorms ways to bless us and maps out which mountains to move next.  On top of that, He answers every phone call, every prayer, day or night and waits for updates.  So as challenging as this continues to be, especially these last number of weeks, I think it reflects a lot of the ways God loves us while we are separated from Him here on earth; unconditionally and with an ever burning desire to be just a little bit closer. 

With all that being said, I know we are long overdue for a medical update for Veya…but I have chosen to hold off for this length of time as there have been so many moving parts and plans that are constantly changing.

From our last update, liver wise…her team was hopeful that things would begin to self resolve after her second ERCP procedure.  Unfortunately that has not been the case.  Veya underwent a third ERCP which was not as successful in removing stones due to where they are stuck and Veya’s bile ducts being so narrow.  The team placed the stent back in to open things up which has been helping a little bit but her liver enzymes continue to remain quite elevated.  This has left the team with no other option except for to present Veya to the Liver Transplant team.  It took a few weeks before they could discuss her case as we needed each one of her teams to weigh in with where she is at with her other system issues.

From our Cardiology and Pulmonary Hypertension team we received the most amazing news!  They are very pleased with how her heart continues to heal and they saw from her last echo that her pulmonary hypertension has fully resolved!  This really caught us by surprise, the disease that we nearly lost Veya too multiple times was all gone!  There was much rejoicing in her room that day along with an order from her PH team to begin weaning Veya off her Sildenafil medication that was used to treat her PH.  Today she is no longer on that medication and has responded well to coming off the medication.

Next we heard from her Nephrology Team (Kidney Team).  They performed many tests on her kidneys to get a true picture of where they are at, one test being a GFR Test. This test specifically estimates how much blood passes through the glomeruli each minute for Veya. Glomeruli are the tiny filters in the kidneys that filter the waste from the blood.  From nephrology’s perspective, they are okay with her kidney function.  They gave them a school grade of C+/B-.  The GFR test showed them that one of her kidneys is doing a lot more work than they other but that was too be expected because of her right kidney having a blood clot in it back when she was eight weeks old.  They have given the transplant team their “stamp of approval” should this be a road we need to go down for with Veya.  However keeping in mind that Veya very well could receive further damage to her kidneys during a transplant because of the strong medications that are used.  Nephrology did explain to me that they do have medications that can help support her kidneys after a transplant and that they would be able to do dialysis again for Veya if it was needed to allow them time to heal once again.

After much deliberation, the transplant team along with Veya’s G.I Team (the ones who follow her with her liver condition) have decided that now is not the right time for a liver transplant.  They feel that Veya is still too fragile to undergo a 12hr+ procedure, especially because she has never even been home.  They would like her to have that time to continue to grow in stability.  The teams all agree though that some sort of surgical intervention is needed, and have now come up with a plan to reconstruct parts of Veya’s liver.  I met with the liver transplant surgeon last week Monday and received a full biology lesson on our liver (my head hurt from the information overload after that class haha)

The surgeon explained that he will start by removing Veya’s gallbladder.  This should hopefully eliminate the stone issues inside her bile ducts.  He then will move her bile duct system around and reroute it to drain directly into her gut.  While he has done this procedure on older children and adults, Veya is going to be his youngest patient to receive this.  Therefore he said, the effectiveness of this procedure has not really ever been studied on kids her age.  He is not able to say that this will work but he is hopeful that is could and avoid her needing a transplant.  If it is not successful, it’s his hope that is can at least buy her more time to grow healthier and older, to be able to go home for a little while before needing a liver transplant.  This surgery will take 6-7 hours to perform and he hopes to do it near the Christmas holidays.  While there is definitely a sense of relief to have a new game plan in place...there is equally some heavy feelings we are experiencing as a family.

There was a lot of hope to be all home for the holidays….but instead we will be spending Veya’s second Christmas inside an ICU again.  We have all been living for the holidays this year so that is why the timing of this just feels a little discouraging.  I hope you can hear my heart in this, I know this step is necessary to ultimately bring Veya home…but I think it’s okay for me to hold space for my family and the ongoing reality of us living this past year inside the hospital.  It’s also going to be incredibly hard to see Veya in such a critical state again.  I am thankful to our amazing teams here at Sick Kids and I know the One Who goes before her and behind her.  We will be carried by God through this next big step of the journey.  Please continue to pray your bold prayers with us to our Heavenly Father.  That this may be the answer we have been searching for her liver.  That we may be able to finally go home and not have to venture down the transplant road.

  

"Where shall I go from your Spirit?  Or where shall I flee from your presence? If I ascend to heaven, you are there!  If I make my bed in Sheol, you are there!  If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me, and your right hand shall hold me.  If I say, "Surely the darkness shall cover me, and the light about me be night," even in the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.

                                                   Psalm 139: 7-12