"Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The Lord will fulfill his purpose for me; your steadfast love, O Lord endures forever. Do not forsake the work of your hands."
Psalm 138: 7-8
Hello from McMaster’s PICU!
Yes, you read that right😊…we
have been moved back to Hamilton and what a whirlwind of three weeks we just
had! Veya was transferred back to
McMaster on Monday (May 13th) and it went a bit smoother than
her last transfer. (How we feel about it is a very loaded answer, we love both
hospitals for different reasons but I’ll save that for a later post) There have
been so many moving parts, it made it difficult to hop on here, but now that we
are settled in and the mental gymnastics have calmed down a bit….we are back
with an update!
As you can see, the Sick Kids team switched gears again
and they decided to just go for it and perform the specialized MRI (called MRCP
test) for Veya back on May 6th.
They were originally going to hold off on this test for a few more weeks
due to her compromised lungs but ultimately felt it was best they seek out the
answers they needed for her liver and it’s function. Veya needed to be
intubated again for this procedure, but she handled it all really well and was
able to be extubated shortly after and put back on her BIPAP/CPAP mask.
The MRCP test showed the team that Veya’s liver is full
of cysts and that the tubes in her bile duct system are inflamed. At this time, the team believes what we are
dealing with her is called - Caroli Disease / Syndrome. This is a rare
inherited congenital disease of the liver.
This news was very difficult to hear and something that we needed to
take some time to sit with and try to learn more about before we could speak on
it with everyone. At the moment it is an
unofficial diagnosis from the team as they need to run a whole new panel of
genetic testing to confirm this for Veya. Both Jeremy and I have just completed
various rounds of blood work that have been sent off for what is called a “full
genome sequencing” test.
To try and simplify this more, the team is trying to
look for the two compromised genes in Veya that correlates to the Caroli
Disease / Syndrome. If they find that in
Veya, it will confirm their diagnosis for her.
If the two genes are totally fine, then they are back to the drawing
board to see why her liver is “acting” this way. We as her parents needed to get tested
because if they find her compromised genes… then they can see if it was truly
inherited from us. The reason it is
called a rare inherited congenital liver disease is because it’s not common
that you get two parents together that both carry the same compromised gene and
therefore resulted in Veya having two compromised liver genes. Some may ask
then why do we both not have the Caroli Disease….and it would be because we
both carry one compromised liver gene not two. Leaving us each with one “healthy
/ normal” liver gene. We will also learn
from the full genome sequencing test what other health conditions we are
predisposed to.
We do not know yet how the team plans to treat and
manage this for Veya…we also don’t know how progressed this disease is for
her….what we do know is that she doesn’t require immediate surgical
intervention and therefore with much deliberation between the two hospitals
they decided that it was safe for her to transfer back to McMaster. Veya’s Sick
Kids team and Hematologist Specialist will still be very much involved in her
care, they will be the virtual decision makers, and McMaster will be the hands
to execute those decisions.
We have also been told that if the genetic testing
identifies the compromised genes for Caroli Disease….that we could also be
looking at another diagnosis of Polycystic Kidney Disease for Veya too. The compromised genes can affect both organs
and the team did see very small cysts on her kidneys from her MRCP test. If this is the case, this could actually
explain a lot as to what happened to her kidney function back in January when
they were only functioning at 15% and needed dialysis. Only time will tell and
we will not have the results back from the genetic testing for another 6-7
weeks.
Taking a look at where things are at for Veya’s overall
lung health… Sick Kids told us that they aren’t quite sure where her lungs will
heal too. They said that she may have
some permanent damage to them from everything she went through as well as the
need for being on 100% oxygen support for a while and requiring them to use the
bag on her lungs to keep them working for her back in March. Veya is
technically on room air and doesn’t require more oxygen but it’s the pressure
support that she still really needs to keep her lungs open and inflated. They need to build up their stamina and
endurance again so they don’t tire out so easily. We should be able to see her
wean down a bit on the pressure support overtime as she continues with physio
therapy. Her diaphragm / chest muscles
are very weak and need to be strengthened in order to better support her lung
function.
Aside from her liver and lung function…we are also
working through some new concerns.
Despite Veya tolerating her transfer back to McMaster much better than
the first transfer….she ended up with a fracture to her right arm. The team is currently trying to piece
together when this fracture may have happened.
So far they know from the x ray she had at Sick Kids the morning of her
transfer, she did not have a fractured arm.
It’s assumed that it happened between the time of transfer and the first five days she has spent at McMaster. The
team is also going to do a scan of her bones to determine the strength of her
bones and to make sure there are no other weak spots or unknown fractures that
they should be caring for. The team also
had to chase down yet another infection for Veya. They decided to remove her last PICC line in
case that was infected. We learned that
it was infected and she has now been put on a rigorous 6 week antibiotic course.
As you can see, this has been a lot for us to take in
and to be honest it still is. With
Veya’s heart defect we knew early on about it and had time to acknowledge our
feelings and learn more about it before she was born. With these two potential diagnosis it feels
harder in some ways because they feel new to us and caught us by surprise, but
we are finding our rest in that knowing that God saw it all. He saw every health complication for Veya
before the doctors and before we did. He
saw every hurt we would experience, every tear we would cry, every overwhelming
thought, every struggle and triumph we would have along the way with her. Yes it is makes us sad, and it’s been hard
but God has seen it too and He has a very special way of using what was meant
for sadness and pain, for our good. One
thing I know for sure, God isn’t in heaven saying “I think you should worry
about this tonight” or “I need you to figure out your daughter’s health
complications for me.” No. He’s saying “Rest now, my child. Lay it at my feet and go to sleep. I will watch over you.”
So with that, we ask you to join us, in laying any of
your worries and concerns at our Saviour’s feet tonight. We pray that you can
feel carried by Him too in whatever hardships you may be currently facing.
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