Eight Months

"The LORD is good to those who wait for him, to the soul who seeks Him. It is good that one should wait quietly for the salvation of the LORD."  Lamentations 3:25-26

Keeping in sharing the beautiful filled days along with the hard and messy days, this past week was sprinkled with a few of those hard and messy days for me. In the quiet moments sitting in Veya’s room watching her take a nap, or laying on the floor playing with her my mind would start to drift and it would try to make sense of how are we still here… sitting inside a hospital eight months later unable to bring Veya home.  It’s hard to understand why there are no answers yet for her liver, wondering when or if we will hit the AHA moment with her team.  Until…(what felt like a whisper) a reminder, that God is still unfolding his plan for her.  As parents, we are just here to be a vessel to love and care for her.  Her testimony is hers, and often times, it can alter the course of your own – and change many things about your own life. I often wonder these days that perhaps the testimony of our children is meant to also shed layers from our own life and push us to grow further in our own relationship with God.  

Sitting with this has shifted our perspective once again on this journey.  Yes, we wish we could take away any pain that Veya may have and her health complexities but we don’t wish to try to take away her testimony. All of our stories are being written in ways many of us probably didn’t expect but in ways that God will continue to use for His glory. In that we are finding our comfort to carry us into the new week ahead.

Veya underwent the HIDA procedure on July 31^st.  They injected through her PICC line, radioactive tracers that were to attach themselves to her bile cells. The team hoped that it would show them if the cysts on her liver were filled with bile or not so that they could rule another thing out.  Unfortunately after spending six hours in the nuclear medicine ultrasound unit, the imaging and results came back inconclusive. 

Since the HIDA test, things have been quiet as we have been waiting to hear from Veya’s GI team how they would like to proceed. The plans were to do the liver biopsy on her this past week but they have put that on hold for now.  There were a lot of scans and ultrasounds that were repeated this week for Veya which the team is carefully reviewing at this time.

Over the August long weekend, we were able to all go up to visit Veya as a family which was just what we needed.  We haven’t been all together since the second last weekend in June and it can feel hard at times because it feels like Jeremy and I are disconnected from the “normal” world around us since living in the hospital world.  Then at times it can even feel like Jeremy and I live in separate worlds from each other because one of us being at home and one being in Toronto.  So even though it was a little chaotic keeping the three kids busy in Veya’s room, it was just the best feeling to be all together in one place, in each others company.  Veya did struggle with some fevers over the long weekend, this was due to her liver enzymes spiking quite high with the cysts that are still present on her liver.  Her bilirubin levels (jaundice levels) continue to trend down because of having most of those gallstones removed.  The team did notice on recent imaging that there are some new stones present but they don’t believe they are blocking anything at this time.  They will continue to monitor. The team is also waiting for confirmation from the radiologist to see if the large stone in her main bile duct has move.  From what they could see in their preliminary findings…it looks like a real possibility that it’s gone so hopefully they can confirm that this week.  They will then need to decide if Veya needs to repeat an MRCP procedure to ensure the new stones aren’t blocking any ducts and perhaps determine from there if another ERCP procedure is needed to remove those stones and possibly the stent if that large stone is gone. 

Part of the scans/ultrasounds that were done this week was an echo on Veya’s heart.  This was a scheduled follow up appointment for her once she was first discharged from Sick Kids.  The echo showed that her pulmonary hypertension is sitting in the moderate to severe range and that she has leakage around the two holes that were patched in her heart.  The leaking has always been there, but the team was hopeful that her heart tissue would grow and close it in fully. I’m not sure on the timeframe for when they would expect that to happen, we will be hearing from the cardiology team and the pulmonary hypertension team later this week too.

Lastly, Veya was also seen by the G-Tube team.  They did their ultrasound on her to see if she would be a candidate for receiving a G-Tube due her liver being enlarged.  We heard back from them that they are able to place one for her, but they would like to meet with us this week to discuss if this something that her teams and we are parents feel comfortable in proceeding with, just because of that history she has with contracting infection easily.    

In an earlier blog post, I mentioned the struggles for Veya with weight gain, but we are thankful to hear that she has been making small gains with a current weight of 12lbs. 

We are so thankful to God and praise Him for any and all news when it comes to Veya’s health. No matter if it’s good news or not, it continues to help direct the minds and hands of the doctors and nurses that are caring for her.  We can’t wait until we’ve reached the “mountaintop” so to speak…to praise and worship Him.  He is to be praised and worshipped in the valleys. Praise and worship Him before the miracle happens.  Praise and worship if the miracle doesn’t happen the way we would like it to and even when doubt fills our hearts. When we’re in that hospital room watching God preserving Veya’s life, we will continue to praise and worship our Amazing and Sovereign Father in Heaven.