3 Month Liver Post Op Update

If you are new to the blog, the past few months have been the hardest I have ever experienced in motherhood.  Everything from a high risk pregnancy that required close monitoring, spending over 400+ days away from my older kids and family, and the whole time wondering if our baby girl will “move past” some of her medical complexities and ever get to see the outside of her hospital room. 

I know God is working and that He is always good and faithful but there are so many times (especially as of late) where I feel defeated, frustrated and anxious that I just can’t see what He sees.  We are on day 477 of our sweet baby girl being in the hospital, where she is currently resting inside of PICU and I am still clinging to this specific story from the Old Testament that shows how God works in our story.

In Exodus, when God was leading the Israelites out of captivity it says there were two paths that He could have led them down to safety.  A shorter path through a city nearby and the longer, harder path through the desert where the wouldn’t know where their food, water, and protection would come from.

Because God saw their future path and sees far beyond what we could ever imagine in our path…he led them down the longer path because He knew that the shorter path would cause them to doubt and turn back into captivity.  So the journeyed long days and long nights not knowing where they were going or how long it would take to get there.

 God provided each step of the way.

God strengthened their trust in Him.

God heard their prayers and cries.

God promised to be with them day and night.

God led them to the promised land that He had planned the whole time.

The Israelites couldn’t see it but God saw everything. I might not be able to see what God is doing in our long and hard season but He is always there.  He is always working and He sees what lies at the end of the path.  I know He is preparing us all for something big and He continues to help us keep our faith and trust in Him.  I am counting it joy that we get a front row ticket to His amazing work that He is doing in Veya’s life and the life of our family.  Yes it is hard, it is tiring, it is heavy….but there is still so much joy to be found.

UPDATE –

We are about three months post op from the liver procedure Veya had done where the surgeon went in and reconstructed her bile duct system and removed her gallbladder.  We are thankful to God that He saw Veya through another large surgery and through the complications she had during her recovery phase.  The surgeon was very pleased with how Veya tolerated the procedure but afterwards she contracted RSV and an infection in her abdomen caused by an ascites (large build up of fluid where they drained more than 300ml of fluid for her) which kept her in ICU for an additional six weeks.  During that time, Veya also experienced a very scary event due to a medical error/oversight, where she received the incorrect dose of her potassium supplement (10 times the normal amount for her size) which sent her into code blue because her heart went into a dangerous irregular heart arrhythmia.  The team had to use an electric cardioversion machine to shock her heart back into normal rhythm.  We praise God that He blessed the hands of the ICU team in that they were able to quickly stabilize Veya.

At this time we do not know how or why this happened, and due to how significant of a safety event this was, remains an ongoing investigation at Sick Kids.

Many have asked us, if this procedure has been successful for Veya in resolving her bile issues within the liver….and unfortunately it has been deemed unsuccessful.  She still has our GI/Liver Transplant team very confused as to why she struggles with bile motility.  When the surgery was performed, our surgeon sent off tissue, and the bile casts (hardened bile) that he found inside her bile ducts…he sent off a piece of her bile duct itself as well as her gall bladder all for testing through pathology…..and the results we received back all came back normal!  They cannot explain why Veya’s bile is so thick and sludge like.  The only form of treatment they see left for Veya is a liver transplant.

Fast forward to February, we had a large meeting with our transplant team where they had to deliver the very disappointing news that Veya is not a candidate for a liver transplant at this time.  They also expressed that even though they will re evaluate her sometime in the next year, they feel as though it’s a slim chance that they will likely change their minds.  For the first time on this journey with Veya, we both felt utterly defeated, frustrated and angry.  Without going into all the specifics, basically the reasoning and rationale we were provided was puzzling and not adding up so to say.  All of Veya’s specialty teams like (cardiology, nephrology, respirology etc) all met with the transplant team and said that they are more than happy to sign off on her to go for transplant.  They all are thrilled with how each system has improved significantly for her and they all felt that each system would hold up beautifully during a transplant and post transplant.  Yet at the end of the day it is entirely up to the transplant team to decide if they feel confident enough to move forward.  We understand how intricate and complicated a transplant surgery is compared to even the cardiac surgery Veya went for, but we are just confused because they would like to see Veya either come off her .5ltr of oxygen (which is like a wif of low flow oxygen) and some of her diuretics (which helps her body remove extra fluid as she is a fluid sensitive gal) They would also like her to show them more stability and go home for a while.  (This part we can understand) I guess we were just expecting to hear that if we can get her home and let her rest for six months then plan to come back in for transplant.  We just felt really caught off guard by the fact that they likely won’t ever consider her a great candidate.

So we sat with our big heavy feelings for a number of days, and we cried it out in many prayers.  We have since found peace today in this decision, as we too would just love to take her home and let her body rest.  We know that her liver is still functioning great, so we feel like we have some time here before she truly needs a transplant.  We also believe there must be a reason for God to have no opened that door yet for Veya and we don’t want to try and push for something that He might not have planned for her.  We are praying for a big miracle here.  We believe that God in His power is able to grant full healing to Veya’s liver, perhaps that is why He has closed that door.  Just maybe in His time He wants to heal it so she doesn’t need to go through transplant.  Nobody knows, its such a mystery to so many!  Or maybe He wants to give her a good time of rest so her body is in better shape to be able to truly handle a transplant surgery.  Or maybe He wants us to explore other options for Veya outside of what Sick Kids has to offer.  We don’t know yet but we are slowing down, sitting in the silence and in His Word and in prayer in hopes to feel Him guiding us in what next steps we should take.   

If we are being fully honest here, this part is so difficult. Looking down at this child that God has entrusted into your care, who is so completely trusting in your love and care for them, knowing that the decision you have to make will not be easy for them – a surgery with a difficult recovery, an intensive therapy that is tons of hard work, a new medication with potentially uncomfortable side effects – that moment will have even the most confident parents questioning themselves.  We want to shrink back from that burden all the time.  We just want to be mom and dad to Veya, not medical mom and dad.  But we keep going, because our little ones are counting on us.  We are their voices in times and places like this and we are only able to move forward with confidence in these big decisions because we know and believe that nothing happens apart from God’s Will over our lives!

Looking at where we are today,  Veya recently got readmitted to PICU due to increase work of breathing.  A few weeks back Veya contracted Influenza A which has not been kind to a lot of children this season.  She worked really well throughout it but at the end was pretty exhausted and needed extra support.  She was intubated for about a week and was just recently extubated and moved to BIPAP and has weaned down to CPAP settings now.  The goal is to trial her on heated high flow in the next few days and hopefully discharge her back to her 7B team in General Peds.  Veya is also still recovering from a double hip fracture.  I know this one has shocked many of you, as it did us, however it’s not all too surprising because she has Osteopenia (weak brittle bones) due to the amount on medications she has been on.  She does receive an infusion every three months to help strengthen her bones but we won’t see that truly working for her until several months into the treatment.  Shes only received three rounds thus far.  She will remain in her hip harness for a total of four weeks and they hope to remove it for her this coming Friday if all looks well on her xray. 

We are having some big discussions with multiple teams right now on coming up with a strong game plan to try and get Veya home.  They have a few things they need to finish with her before discussing a discharge date and they feel more confident to discharge her likely towards the end of spring when we are truly out of the cold and viral season.

On that note, I am currently back to spending the week days with Veya at Sick Kids while staying at the Ronald McDonald House.  We got to enjoy a few weeks having me spend more time at home with the rest of the family (thank you to all the visitors that took time out of their busy schedules to be with Veya so that I could have some relief!)  This week and the weeks following will be another transition for everyone so we are just asking for your prayers.  Please pray that God continues to protect the little hearts of Ivylee, Irelyn + Lincoln and that He helps them to adjust well to these new changes again.  We know God is not far from them either and He is carrying them in the palm on His hands too.  It’s just been so hard on them and difficult for them to understand why their baby sister still can’t come home yet and why their baby sister gets so much of mom and dad’s attention.  We hope and pray we can all be together again at home one day soon!

Thank you for your constant prayers, your messages of encouragement and support and the delicious meals from the meal train!  Thank you for riding this out with us, we are SO blessed to have you all in our corner.  God is good, He has not left us. He is upholding us even when our knees want to buckle. He is sustaining us even when we cannot see past the pain. 

For those that wish to see day to day updates, I update constantly on my Instagram page which can be found at the handle of; @krystallynne.vdb

"We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;" 

                                              2 Corinthians 4:8-9