Elijiah
was praying for rain and kept sending his servant to look for evidence and then
this happened: Finally, the seventh time, his servant told him, “I saw a little
cloud about the size of a man’s hand rising from the sea.” Then Elijiah shouted,
“Hurry to Ahab and tell him, “Climb into your chariot and go back home. If you
don’t hurry, the rain will stop you!” Listen to his excitement. He shouted! Oh,
I love that. And if it didn’t happen on
the seventh time, he would have kept sending his servant back until it
did.
Every
day that we visited with Veya this week, we’d get so excited for the small updates
from the nephrology team because there is evidence that her kidneys are
healing! Her creatinine and urea levels have been on a steady decline day by
day. We don’t need to wait until her kidneys are fully healed to be excited, we
are already praising God because the evidence of the “little cloud” is very
clear. Healing is on the way for her
kidneys! There is always evidence of God’s work in our life to get us excited
that we are heard, loved and not alone. To say that we are so incredibly thankful
for this blessing from God would be an understatement. As I am writing, the team decided to start
challenging her kidneys and have stopped her dialysis cycles as of Friday
afternoon at 3pm. They reassessed things
Saturday afternoon and were very pleased with her blood work and urine output
that she is currently going into her second night without dialysis! Veya also had an ultrasound done on her
kidneys which showed that she has a clot in her right kidney. So, the team will administer a blood thinner
medication to her in hopes that it will help clear it in due time.
Earlier
in the week, Veya also spiked fevers again, and with thankfulness they were
able to identify the root cause to these fevers and have been treating her for
a UTI that she contracted from her catheter. Her fevers have since subsided and
she is nearing the end of her antibiotics for the UTI.
The
other goal for Veya this week was to have her completely removed from her
Nitric Oxide Machine. They managed to
wean her from .5 down to .1. They attempted
a few times throughout the week to take her off it but her oxygen/respiratory
stats dropped significantly. They gave
it one last shot Friday morning while I was there but unfortunately, she
struggled yet again. I just need to comment
on how amazing her nurses have been. They
really start to feel like family because you spend so much time with them that
we are getting to know them so well. She
had a lovely senior nurse coach her through coming off nitric that morning and
it brought tears to my eyes because she loves our little girl so much. She tenderly stroked Veya’s face while
singing to her, trying to keep her calm while encouraging her breath work as I stood off on the side.
Watching
Veya struggle with her oxygen for those 16 minutes was not easy, especially because
there was nothing, I could do…and we haven’t been able to hold our daughter (since
January 11th) to help calm and soothe her through everything… yet in
that moment God granted His peace to me.
I could really feel His presence in that room with us. It physically felt like God took His hand and
placed it gently on my back, while we all cheered Veya on to try to do this on
her own… it was like He whispered to me that it just wasn’t her time yet but
that he’ll get her there. I don’t think
I’ll shake that feeling / moment for a long time. It was truly amazing. The plan now is for the team to increase her Sildenafil
medication once again (this is the medication that works in the same way that
the Nitric Oxide Machine does) and attempt one more time next week to take her
off Nitric. If they cannot successfully
wean her from it, then cardiology will need to regroup and figure out their
next steps for her. Currently there is
talks about setting her up for possibly two procedures (that would have to be
done at Sick Kids) The first procedure they might try would be to run catheter lines
up through her groin and to her heart and lungs to get a more accurate reading
as to what is going on with the blood flow and pressures in those areas. They are wondering if they are missing
something that the echocardiograms are not clearly showing them because it’s
very rare to not be able to wean someone off Nitric who is sitting at just .1
down to 0. She isn’t receiving much
nitric at all yet it’s puzzling her team as to why her stats are significantly
affected when they do so. Then depending
on the results, they get from that procedure they may consider putting what is
called a Pulmonary Artery Band around her heart. This would help control the over circulation
caused by the large left to right shunts. If she receives this, it could also
bid them more time in allowing her to grow more before surgery as well. So, there is much to discuss and figure out
in these next two weeks.
There is
so much in this day to celebrate, to be glad about, to be thankful for. This is the day the Lord has made. We are not a cup half full or a cup half
empty…. our cup runneth over. Thank you
everyone for your faithfulness to pray, you have been carrying us from the
start and we ask that you may pray specifically for Veya and her team as we
head into next week…that if it be the Lord’s Will….she may successfully come
off her Nitric Oxide Machine.
“Therefore do not be anxious about tomorrow, for the tomorrow will be anxious for itself. Sufficient for the day is its own troubles."
Matthew 6:34
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