We're Going Back to Sick Kids!

"In all their affliction he was afflicted, and the angel of his presence saved them; in his love and in his pity he redeemed them; he lifted them up and carried them all the days of old."  Isaiah 63:9 

204 days inpatient…

What a journey it has been.

We are still taking things one day at a time.

Veya’s current health concerns remain a mystery to her team.  They have found no answers yet as to what is going on with her liver. Her enzyme levels along with her bilirubin continue to climb.  It breaks my heart because I can physically see that her liver is not functioning the way it should be by way of her color.  But Veya remains so strong and continues to persevere through each health challenge that has come her way by the grace of God.  She is such a fighter and is a million times stronger than me.  Each day we have to choose to fight.  Fight for joy, fight for peace, and fight for Veya to receive the best care possible.  That best care for Veya is at Toronto Sick Kids.

Today it was decided by her Complex Medical Care Team here at Mac that we will arrange for Veya to be transferred back to Sick Kids.  While this may come as a surprise to many of you reading this, it feels so right for both Jer and I.  We felt like it was a little too soon to have left them in the first place when she started to struggle with her liver, so we do look forward to going back and are at peace with this decision. 

Some of the extensive genetic testing has come back for Veya which has shown the team that all 20,000 of Veya’s genes are not compromised in any way.  Specifically, the gene that correlates with the Caroli Disease that the team initially thought to diagnose Veya with.  This is great news! But it brings us back to the drawing board in needing to get to the root problem as to what is going on in the liver. 

At this point both Mac and Sick Kids agree that a liver biopsy needs to be performed on Veya.  This is normally something Mac can do, however when you are a cardiac kid, this procedure needs to be done at Sick Kids because of needing to go under an anesthetic.  Seeing as Veya is almost 3 months post op and still has mild pulmonary hypertension, she needs her anesthetic done by her cardiac anesthesiologist. They are the best ones to handle Veya should she experience any heart complications or cardiac arrest while under the anesthetic.  We have had some people ask us why they would have not done this biopsy at the beginning when she was still at Sick Kids…. It’s because it’s not ideal to poke around in any organ if you don’t have too.  The team was really hoping for a solid answer to come from the genetic testing, and it didn’t.  So this is what they are left with to try and find the answer.  There is a large concern that perhaps her liver is presenting in this way due to her mild pulmonary hypertension.  They are worried that once they poke into one of the cysts to test the fluid in it, that it may not just be fluid, but rather blood and cause internal bleeding for Veya.  If the liver issues are being caused by the pulmonary hypertension…then there is a chance for the liver to be able to heal itself once her hypertension resolves in time and there wouldn’t be a need for a liver transplant.  After our large discussion with Veya’s teams we have decided to go ahead with this testing because we feel completely at peace that God will continue to see her through this next procedure and that His plans for her life will continue to unfold according to His Will.  The alternative would be to just keep waiting this out and see where the liver continues to go, which doesn’t feel right to us because it could progress and get worse, she could end up sicker and not fit for a transplant, and there is no way of knowing how long we would have to continue remaining in the hospital, when the goal here is to get her healthy and able to come home Lord willing. 

Aside from the ongoing issues with her liver, Veya remains stable in all other areas of her health.  Her heart is continuing to heal, the pulmonary hypertension remains the same, not worse but not better.  Her four remaining blood clots continue to improve.  Her fractured arm has healed, and we have been given the green light to resume all normal movement for her and that arm.  She has finished her six-week antibiotic course, and the infectious team has come back and feel confident that there are no current infections going on.  Her fevers have improved somewhat, she goes a few days without them and will spike low grade fevers here and there that are able to be brought down by a cold compress.  She remains stable on her high flow oxygen support; they have trialed her off onto low flow but ends up needing the extra support so we will continue to give her the needed time for her lungs to heal.  The dietician continues to try to tweak Veya’s feeds because she does still struggle to gain and maintain weight, we are unsure why it’s been hard for her, but it could have something to do with her body working extra hard with a liver that is working at it’s best. 

So as we prepare to make yet another transition to a new team at Sick Kids, we are asking for everyone to pray alongside us.  Please pray that God can continue to keep Veya strong.  That He may give Jeremy and I inner strength (because we are feeling quite tired these days) Bring our family peace that only comes from Him.  And wrap His arms around our kids that they always know how loved they are.  That He may continue to help us see every challenge as an opportunity to trust Him deeper and that in this hard season we may get to know Him better.  In these times of darkness, may we experience the safety that can only be found in the shadow of His wings.  

 I will be back with another update once I hear of our transfer date.