"Glass Child"

 "The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father's God, and I will exalt him" 

Exodus 15:2

“Glass Child”

 A term used to describe the challenges of siblings of children with disabilities or serious medical complexities/chronic illnesses. The term refers to the idea that parents seem to “look right through” their healthy children due to the demands of caring for the child/children with a disability.  Jeremy and I often think of all the feelings that we are processing, that undoubtedly, our healthy children must be feeling them too. However, they are trying to process and keep up with everything through the lens of a child, without the maturity to really be able to grasp the magnitude of their little sister’s medical needs.  This is an aspect of being a medical family that I haven’t discussed too much here, it’s not super easy or fun to talk about it either …it’s even harder to navigate. There is guilt on all sides.  There is no manual on how to pilot this family dynamic but we’re trying our best to make sure Ivylee, Irelyn and Lincoln never feel like they are emotionally neglected because their mom and dad had nothing left to give after the long days and weeks spent at the hospital.  We don’t want them to feel like a “glass child.” Similarly, we want Veya to feel just as important, loved and cared for as her typically developing brother and sisters. Which is why we would like to start this blog off by thanking the wonderful ladies that recently took time out of their own busy schedules to come down to Sick Kids and stay with Veya for us, so that we could pour time into our three big kiddos.  Spending special one on one time with them is one of the primary ways we’re combating “Glass Child Syndrome” and for our family it absolutely feels like the right approach. Thank you for gifting us with that time together! If we could ask everyone to specifically pray for our children, we would be very grateful for that as their feelings are starting to catch up with them and my return to Sick Kids has been a hard adjustment for them once again.  Their hearts just long for Veya to come home (as we all do)

Looking back at our last update, I can’t believe four weeks has passed by already!  It feels like so much has happened and yet nothing at all so let’s do some catching up!

Veya was originally scheduled to undergo her g-tube surgery on September 4^th which ended up being cancelled the morning of because little miss spiked a significant fever.  The team ran tests and bloodwork to figure out the source of the fever and learned that she had an infection in her PICC line.  So back on the antibiotics she went and has since then cleared the infection!  We are so thankful the antibiotics worked this time (in the past the teams have had to just remove the line and put Veya back under an anesthetic to insert a new line which is not an easy thing to do for her) Veya also required more oxygen support and therefore was moved back onto the heated high flow which she remains on today.  (They hope to try to wean her back to low flow later this week)

After the infection cleared Veya continued to struggle with on and off fevers.  The team decided to extend her antibiotic course until the end of this month as they are highly suspicious of another episode of Cholangitis in her liver (inflammation/infection in her bile ducts).  This is something that she is going to constantly be at risk for her because the bile still is not moving well through her ducts which then causes infection.  The team has also decided that once she is finished with this round of antibiotics, they will then start her on what is called a “preventative antibiotic”. She will remain on that for quite some time as they continue to try to work out a diagnosis for the liver. 

The orthotics team came by early last week to reimage her femur bone fractures to which they were pleasantly surprised to see them healed! Veya was expected to be in her leg casts for 6-8 weeks, so this was wonderful news to hear!  She only needed them for a total of 3 weeks.  However, in typical Veya fashion, she wasn’t quite ready to be done with fractured bones.  It was later discovered over this past weekend that she has a fourth fracture in her right wrist. So, she is back to being in a cast (we requested to bubble wrap her entirely but were met with laughter and a gentle “no” from the team) They consulted again with Endocrinology Team to see if they can have the green light to start Veya on the bone medication that will help strengthen her bones.  From what I just heard from the team this morning, Endocrinology is still not ready to start it yet because they want Veya to be more stable with her fevers, as one of the side effects from the bone medication is fevers.  It would make it difficult for them to determine the source of her fevers (which is already a tricky thing to sort out day to day without the bone medication) but we all agree it is still very much needed.

I finally got to reconnect with Veya’s GI/Liver Team as well Monday morning to discuss the long-awaited biopsy results!  The biopsy was both helpful and yet not helpful.  It showed the team that Veya’s liver cells are normal, healthy and function very well! We praise God for this as it means that her liver is just fine and not the problem.  There is some fibrosis on the liver that they could see (scarring of the liver tissue) which they can tell is not drug/med related but rather caused from the cholangitis (inflammation / infection episodes that occur often for her) This is why she will stay on the preventative antibiotic so that no further damage (fibrosis) will be done to her liver.  They would like to continue to preserve her liver function.

Surely this sounds like Veya’s in the clear and that she doesn’t have a liver disease but that’s still not entirely off the table.  The biopsy helped confirm that the issue isn’t with the liver itself but that the issue is within the biliary tree system that lives inside the liver.  They still don’t know yet if Veya’s bile ducts are just “sick and weaker” unable to move the bile around properly.  Or if there are stones still blocking the bile ducts that they haven’t been able to properly identify and clear out.  (We are praying that it is simply a case of a stuck stone somewhere and not a function issue with her biliary tree system) While we do not yet have a diagnosis for what is going on, this information has helped the team to move forward and plan to repeat the ERCP procedure for Veya.  They hope to do this within the first two weeks of October.  They will bring back the adult liver specialist, Dr. May, from St. Michaels Hospital to perform this again on Veya.  He will also assess to see how the stent is doing where he last placed it. We are also waiting for one last genetic test to come back which we should receive in the next two and a half weeks.  This genetic test specifically looks at the liver tissue to help further identify if Veya may still have Caroli Disease / Cholestasis.  My intuition feels like this will end up being another inconclusive test, seeing as every other genetic test we have had done, the kids have had done and Veya have all come back negative or inconclusive.  If that is the case, I’m not quite sure yet what GI’s next steps/management would be for Veya.

One thing I do know, is that it’s not something that will keep Veya in hospital.  It may be a while before we receive a diagnosis, it could easily turn into a watch wait and see sort of thing for her. Many have asked us what is keeping Veya as an inpatient…and it’s because she still needs the G-tube put in as well as the ERCP procedure.  In God’s perfect timing we pray that He will make a way for Veya and the doctors so she can have these done. 

Thank you for continuing to celebrate the inch-stones that others may so easily overlook and finding joy with us in the smallest of victories that God continues to bless Veya with.