Making Progress!

In the midst of harsh moments at the hospital, with the overstimulating beeps, the bright lights, the door constantly in rotation with different teams coming in with updates, I’ve discovered something vital as a mom to a medically complex child. 

 When it all gets too much, just reaching out to stroke Veya’s forehead and to hold her hand brings a lot of comfort.  This small gesture goes beyond calming her and soothing her fears; it’s about feeling connected in a world of medical uncertainty. 

Our children, dealing with challenges too complex for words, find reassurance in our touch.  It’s a promise that they are not alone as they go through tests and procedures that might feel scary to them.

When I hold Veya’s hands it feels like a prayer, a quiet moment of peace amid chaos, reminding me of God’s ever-present light during challenging valley like moments.  As we take another step forward in this journey of unknowns, we do it hand in hand, strengthened by love and a deep faith in God’s miracles.

Turning back to last week, Veya was able to go for her ERCP procedure on Thursday!  This was QUITE the surprise to us because there was a lot of hesitation surrounding it and the team was not planning to attempt this procedure until early August, but God carried out His plan here and we thank Him that all went well. 

We met with Dr. May from St. Michaels Hospital to review the procedure before Veya was put under.  He told us that Veya is the youngest and smallest patient in all of Canada to receive the ERCP procedure.  The plan was to go in, and safely remove as many gallstones as possible.  Veya had to be reintubated for this but thankfully she was able to be extubated immediately after it was done.  The procedure took close to two hours to complete, and Dr. May was able to remove all the stones except one.  He placed a stent near the large stone that is still there, in hopes that it will help open the bile duct area and allow the stone to break down and move out of the way.  We have been told that it can take the stone one to three months to move and that the stent can only remain in for a maximum of three months.  They will continue to monitor what the stone is doing by ultrasound over the next few weeks and then will repeat the ERCP test to remove the stent when it’s no longer needed.

So this has tacked on quite a significant amount of time to our second stay down here at Sick Kids.  The GI team really wants to have all these stones cleared before deciding on their next big steps for Veya.  It will give them a clearer picture as to what is going on with her liver and see how it functions with them gone and not blocking anything. 

In the meantime, they have lined up a second procedure called the HIDA procedure which should take place either at the end of this week or sometime next week.  During the HIDA procedure they will inject a special dye through her PICC line and watch to see where it travels to.  This special dye is specifically designed to attach itself to your bile cells and flow where the bile cells go.  They are choosing to perform this on Veya because it will help them rule out if it is bile that is sitting within the cysts on her liver or if it may be something else. 

Aside from the complexities surrounding her liver, we praise God that everything else has remained stable surrounding Veya’s health.  As we are in this waiting period, the team is being proactive and working on other things in the background for Veya that will set her up for success when the time comes to discussing any potential discharge to home.  Veya has been showing us signs that she is interested in discovering things orally.  This is a huge positive step forward for her because she has such strong oral aversion from being intubated for so long.  We are working with occupational therapy in this area, and we got to introduce some puree foods to Veya last week!  We get to put a little bit on her lips, just enough to engage her taste buds.  She was not a fan of the carrots and sweet potatoes but she was willing to try!

We have also been given the green light from her Pulmonary Hypertension team to try and move Veya from her heated high flow oxygen support to low flow oxygen support.  They feel that her pulmonary hypertension is in a safe enough place to do this as long as Veya’s breathing remains stable and not laboured during the transition.  Please pray that this may go well for Veya because it would mean that I can take her for stroller rides around the hospital and take her outside to feel the sun on her skin!  It would also make it a lot easier to bring her home, having her on the low flow verses the high flow system.  We have been told at this time that Veya will definitely be going home with oxygen support, which type we don’t know yet but she needs the support until her lungs can grow strong enough to do without it and until her pulmonary hypertension resolves itself better. 

 Both Veya and I have been enjoying some extra company around here with her big sisters.  Last week Irelyn got to join us and this week I have Ivylee and it’s been filling all of our cups!  The girls both got to experience their first ride on a train and have been diving into all sorts of fun activities with new friends around the Ronald McDonald House and at here at Sick Kids.

Yes, our summer is going to look a lot different than what we had imagined, but it’s another reminder to our family that God crafts our stories and experiences with intention and it’s all unfolding exactly as it’s meant to, filled with beauty and purpose, even if its unexpected. We are so thankful for the core memories that we are still able to build together throughout this unique season.