Here we are, sitting in the waiting room while our little
precious is in the operating room. They took her from us at about 9:00 this
morning, and we were notified that the incision had been made at 10:00. The good-bye
of course was hard; it never gets easier! But Presley was in good spirits and
very excited that today is the day her heart gets fixed! She continues to charm
everyone she meets with her spunk and spice, and of course her sweetness! We
had a good talk with Dr. Emani, our incredibly talented surgeon, and he told us
to expect about 8 hours for the surgery. So, here we wait, prayerful, hopeful,
and peaceful. God is good all the time!!! We have been promised updates along
the way as the surgery progresses.
Now to reflect back on the past couple of days leading up to
the surgery which have been eventful to say the least! Our day on Monday
started bright and early, and we spent most of the day at the hospital. Presley
had several pre-op tests done, and we met more people than we can count.
Everyone has been so kind, and we are so grateful to be here in Boston! We are
in such good hands! Presley has handled every procedure like a little trooper .
. . well, almost every procedure. The blood draw was no joke, and our little
fighter put up a good one. It was heart wrenching to watch her revert to a
place of trauma, but we got through it. Only to then find out that she needed
to do it again! Oh my! She pretty much flipped, but we had a very experienced
nurse do the deed, and it was over very quickly. Phew! Poor baby! She is not a
fan of the pokes! The results showed that her blood was very thick which can be
a concern going into surgery due to a higher risk of clots or stroke. The
solution to this is to give extra fluids through an IV to keep her body
hydrated. We talked with Dr. Marx, our wonderful Boston cardiologist, and we went
over the plan for surgery on Wednesday. We also discussed that Presley would
need those extra fluids before her MRI which was scheduled for the next day on Tuesday
to get final detailed images.
We had a bit of a reprieve after leaving the hospital with
our tired little trooper, and we went to show Presley the beach and the ocean
for the first time. A priceless moment! She loved collecting seashells for her girls and we face timed everyone at home. We had a delicious fish and chips
dinner right by the water and just enjoyed a sweet time with our little girl. Our
faithful God is with us, and we trust Him with every detail. We know her life
is in His ever loving hands! She is worth every minute of what we are going
through!
We arrived back at the hospital on Tuesday at about 12:30
for the MRI. The most hilarious and loving nurse took care of our girl. Her
name was Erin, and she and Presley became fast friends. They even called Erin’s
daughter to chat per Presley’s request! They showed each other family pictures,
and bonded over ballet!
The care in this hospital is top notch, and it brings
such comfort to families facing such difficult trials. Presley had to take some
medicine to make her sleepy, and she was not a fan! However, we got through it,
and they took her back for the MRI. Erin came to get us quicker than expected
only to tell us that they could not do the MRI. It turns out that stainless
steel wire was used to stitch Presley’s sternum together after her surgery in
China which blocked the MRI imaging. There was no way of knowing the material
that was used with any prior testing. So, Dr. Marx did another echo to get the
best images possible, and he felt confident to proceed with the repair. They
decided to admit us to continue the fluids and keep Presley’s blood in a safe
place for surgery. Erin showered Presley with stuffed animals galore, and we
then went to the cardiac unit for the night. It turned out to be a blessing in
disguise because this morning it was so easy to just go straight to surgery.
And here we are . . . we just got an update at 11:40 that everything is going well and she is on the heart/lung bypass machine. Lots of prayers for our girl!
After almost 10 hours the surgery is complete! Dr. Emani was able to do the full bi-ventricular repair, and he is happy with the results. He said her oxygen is close to 100 percent which is amazing! David and I both got teary eyed when he told us our little blueberry is now pink! It will take time for her body to adjust, and she will be watched very closely for the next several days. She probably won't wake up for the next 24 hours and maybe longer. Dr. Emani closed her chest, but there is a chance of needing to reopen it if the valves are not functioning properly and need intervention. Another important thing to watch is her temperatures to stay regulated. He used a conduit to connect the right ventricle to the pulmonary artery, and there is a chance of narrowing so that will also be watched. It was a lot of information to take in, but bottom line Presley has a fully functioning heart! We are rejoicing and praising God for this good news! We are in awe of this wonderful surgeon and his gifted hands! We can't wait to see our girl within the hour and kiss those adorable little cheeks!!!
After almost 10 hours the surgery is complete! Dr. Emani was able to do the full bi-ventricular repair, and he is happy with the results. He said her oxygen is close to 100 percent which is amazing! David and I both got teary eyed when he told us our little blueberry is now pink! It will take time for her body to adjust, and she will be watched very closely for the next several days. She probably won't wake up for the next 24 hours and maybe longer. Dr. Emani closed her chest, but there is a chance of needing to reopen it if the valves are not functioning properly and need intervention. Another important thing to watch is her temperatures to stay regulated. He used a conduit to connect the right ventricle to the pulmonary artery, and there is a chance of narrowing so that will also be watched. It was a lot of information to take in, but bottom line Presley has a fully functioning heart! We are rejoicing and praising God for this good news! We are in awe of this wonderful surgeon and his gifted hands! We can't wait to see our girl within the hour and kiss those adorable little cheeks!!!
