Heart Surgery Pt. 2
"And he awoke and rebuked the wind and said to the sea, "Peace! Be Still!" And the wind ceased, and there was a great calm." Mark 4:39
Veya is now nine days post op. and in the words of her medical team “She is THRIVING” She is doing so incredibly well! Better than they were expecting!
Veya was monitored for 48 hours for potential seizures following
her repair, thankfully those scans came back clear for her. A few days later, they
removed her chest tube drain, her external pacemaker and a few other lines that
were there to support her heart during the critical phases of recovery.
We were introduced to a new group of medical folks, the
immunology team because it was discovered during Veya’s heart surgery that she
was missing what is called her Thymus Gland.
This gland sits on top of our heart and is responsible for the growth,
development and training of our T Cells which are very important to our immune
system function, especially for babies and young children. Once we reach
puberty the gland is no longer really needed, and it will grow smaller as we
age.
We are currently waiting on a bunch of testing to come back
and hopefully this will give her team a clearer picture as to what this will
mean for Veya and how they can best support her immune system if necessary. They have sent off an extra genetic test for
what is called DiGeorge Syndrome (which is a condition caused when a small part
of chromosome 22 is missing, Veya already has Trisomy 21 which is where you
have an extra copy of chromosome 21 but it is possible she could also have this
second underlying condition) We won’t get that back for another 2-3 weeks.
In the meantime they are studying the presence of (or lack
thereof) T Cells. The team is
questioning whether or not her thymus gland may have started developing while
in utero and then stopped and dissolved….or if it is still present in her body
but developed elsewhere. In time we will
know.
Aside from that new discovery, the team has been slowly
chipping away at lowering Veya’s sedation medication as well as her oxygen support. She has been tolerating the weaning processes
very well.
She is currently sitting at CPAP setting on her ventilator (CPAP would be the next step down for oxygen support once she is able to have her breathing tube removed and this was what she was on in the earlier days right after birth) This is good news because it shows the team that she is ready to be extubated! There have been discussions about removing her breathing tube this week, which would be a huge step forward! This girl has been intubated since January 3rd and we are ready to see her pretty little face again, free of the bandages and the tube.
Many have been asking, what the timeframe looks like for
bringing Veya home or at least having her care transferred back to McMaster,
and we don’t have those answers at this time.
We have been told by her team that this is still a long road because of
how long it will take for them to wean her off all the sedation and pain
medication she is on. As well as,
getting her entirely off oxygen support.
Once she is moves to CPAP they will work towards moving her to high flow
oxygen and then to low flow…and then to room air. It takes time, she needs help building up the
endurance again in her lungs and they still have a ways to go with
healing. Veya will now be working with
physio therapy while in the hospital, to practice sitting up in a chair as well
as oral feeding once she is able to get down onto high flow oxygen support.
She will remain at Sick Kids for the time being, it’s the
best place for her to be as they also continue to monitor her heart and ensure
it continues to heal and work well for her.
At this time they do not anticipate Veya needing a second surgery. If her valve shows significant leaking down
the road, then we would have a discussion with her cardiology team to see if
another repair is needed.
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