God Is Working All Things Out

"For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed,” says the Lord, who has compassion on you. 

Isaiah 54:10

I’m back here a little sooner than I was planning as it seems that we have encountered a few “setbacks” and concerns about Veya’s overall health this week. The team has still been unable to successfully identify where her infection is coming from.  The assumed abscess in in her abdomen has not resolved with the two week course of antibiotics like they were hoping for.  Her liver enzymes keep climbing (normal range is under 113 and Veya’s has peaked to 805) which is urging the team to look into things a bit further.  We had to put a pause on weaning her sedation medications and we had to move back up from CPAP settings to BIPAP settings for her oxygen support.  We also have the genetics team back in the picture with a new found discovery. 

Needless to say, yesterday felt like information overload and when I woke up this morning, I was still feeling a little restless inwardly from receiving these updates. (Probably doesn’t help that I’m tired and feel like I’m in a time warp.)

Then I find the fight of flight mode kicks into high gear and I start running all possible scenarios through my mind so that nothing will catch me by surprise.  (It’s crazy what your body will physically and mentally do to try to protect itself)

So as I dragged my feet back to the hospital, I prayed for peace for the day and guess what! 

God showed up again and in the most amazing way! He took my hand and walked me through the doors to Veya’s room, sat me down and had the nurses place her in my arms and brought a lovely lady named Hannah into our room!

Hannah is from the Music Therapy program here at Sick Kids… and she will come by the bedside with her guitar to sit with families and sing to their children. (We’ve been fortunate enough to have her sing to Veya a few times since we’ve been here)

She pulled up a chair beside me….and you know what song she started to sing?  “How deep the Father’s love for us”! And after that she sang “In Christ Alone”.  I immediately started crying.  In that moment, I felt peace restored to my heart and God helping me to surrender all things unto Him.  It’s absolutely amazing to me how God orchestrates all things. Here Hannah was coming to sing for Veya and provide her with therapy, yet it was actually healing for me as well…she was reminding me of our Father’s love for His precious children. What a gift that was!

Currently, we are waiting for a spot in order to have Veya get an MRI done on her liver. (This kiddo really leaves no organ untouched it seems) It was supposed to have happened today but it’s looking more like tomorrow or Friday.  The concern the team has is that she might possibly have what is called Cholangitis.  This is an infection in the bile duct system and if she does have it the team needs to rule out if it’s acute and treatable or if it’s chronic.  If it’s chronic it would mean it’s an autoimmune disease and can be managed a little bit until one day she would require a liver transplant.  To treat cholangitis they would have to insert a tube with a camera down her throat and go in to drain and clear everything and remove anything blocking the ducts.  

The team is also going to rule out if she has Cholecystitis.  (Both of these sound awfully similar)  This is where you experience inflammation in the gallbladder often caused by gallbladder stones (which we already know Veya has) The stones can migrate and block the cystic duct tube through which bile flows when it leaves the gallbladder.  This can clear up on it’s own, however we have been told if you have gallstones you will probably need surgery to remove the gallbladder. 

The liver remains the top concern for her team.  Thankfully she had a doppler ultrasound done today on the liver to make sure the blood flow in her liver is not obstructed and that came back clear. 

The team believes that Veya is requiring more oxygen support because of the enlarged liver putting pressure on her diaphragm.  They feel pretty confident that once they can get better management of her liver, her oxygen support can continue to be weaned. 

 In the meantime, Jeremy and I are currently working with the genetics team back at McMaster due to an incidental finding from Veya’s last screening. They were able to rule out that Veya does not have what is called DiGeorge Syndrome.  The chromosome related to that syndrome is normal for Veya.  However, they did discover that she not only has a triple copy of chromosome 21….but she has what is called a triplication of chromosome 6.  Normally you would have just 2 copies of chromosome 6.  Veya has 4 copies.  At this moment the genetics team is unsure how this could impact her overall health which is why they are suggesting both of us to get tested.  If one of us carries the extra copies….then that would tell them that Veya immune system shouldn’t negatively be impacted by the extra copies because both of her parents are healthy adults functioning well with their extra copies.  If neither one of us has the extra copies….then they will continue to monitor Veya as she grows and study the characteristics of Chromosome 6 in her. 

While this was a lot to take in, I couldn’t help but look over to Veya laying in her bed playing with a few nurses and her toys….she has a way of capturing everyone's attention as they walk in.  I’m often told that she makes them feel warm and happy and that she has a special light that fills the room.   

So today, I’m going to try to learn from Veya, after all she is the one doing the hard work here in recovery with our Great Physician seeing her through it all! 

May we boldly ask you all…to join our family in prayer tonight… as we ask God to be with Veya during her MRI scan, that the results may be favourable and show that her liver may be treated and healed? 

Thank you!!