Hey Everyone!
I'm not sure really where to start but
I wanted to reach out to everyone before Brynn's surgery next week. I
can't believe we are here already. We've always known that this
surgery was coming but “sometime during her third year” was
always in the future. Now it is here.
On Monday we are visiting the Child
Life center at Lucille Packard to meet with a specialist who will
help us prepare Brynn emotionally and psychologically for surgery.
I'm not sure exactly how you do that but I think puppets are
involved. And of course a coloring book. :) We might even give her a
tour of the ICU and recovery if it looks like that will be helpful.
The goal is to give her simple and factual information so that she is
reassured she will be okay but not too much information so that she
gets scared. Three is a tough age for this surgery since her
imagination is already in overdrive and phrases like “open heart
surgery” are scary even for adults.
Tuesday is our marathon day at the
hospital. Brynn is scheduled for an echocardiogram, EKG, and clinic
visit with her cardiologist. We will meet with the team, sign
consents for the surgery, talk to anesthesia, and then hopefully
break for lunch. In the afternoon we will complete all her lab work
and X-rays. A nap is probably not in the cards for us that day so
this might make things particularly grueling. Brynn is really a champ
when it comes to her cardiology appointments so hopefully she will be
able to get through this long day with the usual promise of a trip to
the gift shop for a balloon when it's all over.
Wednesday is the cath procedure. We
will have to arrive very early in the morning. They will do an
examination and then we will take Brynn to the cath lab. Last time we
were able to stay with her as they put her under so I'm hoping they
will allow us to be there this time as well. It's an operating room
with lots of doctors and bright lights so its a very scary place for
a little kid. I'm pretty sure they don't start her IV until she is
already asleep. During the cath they will place a long flexible tube
into a blood vessel in her arm, neck, or groin. They will inject ink
into her blood stream this way and take pictures of her heart. This
will confirm that she is still a good candidate for the procedure by
measuring the pressures in her heart and determining that she does
not have high pulmonary vascular resistance. The cath will take a few
hours and then she is in recovery for two hours. If everything looks
good we can go home that night. We are pretty apprehensive about the
cath since the last time we had a really negative experience with a
nurse and doctor there, Brynn had a complication after the procedure,
and we ended up in the hospital for a week. This time it should be
more straightforward but it's still scary for us to think about going
back.
Thursday we have a day to recover,
pack, and prepare for the surgery. We will be staying with my parents
who live pretty close to the hospital. Lucile Packard will call us on
Thursday and let us know if we will be the first or second case of
the day on Friday. They will give us instructions for when to stop
food and fluids and how to bathe Brynn before the procedure. Because
Brynn is not an urgent case there is always a chance the doctor could
be called away in an emergency and have to reschedule or delay the
operation. We are really praying that this doesn't happen for all the
obvious reasons.
The procedure is called the Fontan.
Brynn was born with a single ventricle supplying blood to her lungs
and body. The first two procedures she underwent allowed her body to
be delicately balanced between inadequate blood supply to the lungs
and oversupply to lungs. When she was born her single ventricle had
to do twice the work of a regular heart since it had to pump blood
for both the lungs and body. When she underwent her Glenn procedure
they redirected the oxygen-poor blood from the top of her body by
disconnecting the superior vena cava and connecting it to the
pulmonary arteries . The Fontan procedure involves redirecting the
blood from the inferior vena cava directly to her lungs without
having to be pumped, its driven only by the pressure that builds up
in the veins which will allow her heart to then be responsible for
only supplying blood to the body. Or so says Wikipedia. :)
Recovery will be anywhere from 2-6
weeks. Right after surgery she might experience a pleural effusion,
which is a complication she dealt with last time. This is fluid
building up around the lungs and the longer it continues to build the
longer it will take her to recover since chest tubes are required to
drain the fluid. This can also be an indication of further
complications so we are hoping the chest tubes can be removed within
a few days and that Brynn will be up and moving around.
We have been warned that the first few
days after surgery are the roughest. She will probably be in pain, be
disoriented, and very cranky or withdrawn from everything she just
went through. Hopefully, this will only last a few days and we should
see her feeling more like herself around the third day.
We are so grateful to all of our
friends and family and church community who have reached out and
supported Brynn and us leading up to surgery. Many people have asked
what they can do to help and we are very open to support during this
difficult time. First and foremost we are asking for prayer! Please,
keep Brynn in your thoughts and prayers that she might have a quick
recovery and that her pain and trauma will be minimized. Please pray
for our surgeon Dr. Reddy, and all the nurses and doctors who will be
caring for Brynn while she is in the hospital. Please pray that our
family has the strength and stamina to support Brynn and care for
Ryan over the next few weeks.
Many people have offered to help take
care of Ryan while we are at the hospital which we might need at some
point! I am planning on being there from 7am-7pm and Tony will be
there from 7pm-7am. He is not able to take any time off from from
work so he will especially need prayers and support that he gets
enough rest. We will both need to be relieved at some point and are
so grateful to everyone who has offered to sit with Brynn if we need
to go home and get some additional rest. I promise, we will call you
if needed!
Food would be great too. There is a
kitchen next to the ICU where we can store and reheat food as long as
it's labeled. My parents also have a second fridge where we can put
meals as well. Thank you in advance for those who have signed up to
bring us something!
Visitors are limited while Brynn is in
the cardiovascular ICU (CVICU) but when she is feeling better and up
on 3 West we might be up for brief visits. Please just send us a text
and let us know if you are planning on stopping by so that we can let
you know if it's a good time.
Finally, Brynn would love to receive
cards, pictures, letters etc. while she is there. She has a tiny
Frozen mailbox with Anna and Elsa and likes to check it and play
mailman. We are planning on bringing it with us to the hospital so
that we can read and display any mail she receives. If you would like to send a letter please message me and I will forward you the address.
Thank you again to everyone. We will be
updating the blog with pictures and her progress as often as possible.
