We are home sweet home and I am getting ready to hit the pillow.....bed has never looked so good! I had no internet to be able to send this post I wrote earlier today. So thrilled to share our news! :)
I am sitting at RM House while Preston naps trying to rush and give
an update. Many dear friends and family have been following us along
this journey and I can't wait to share this news! I have to hurry (more
details later) b/c we fly home tonight. First off, I could write a whole
post on how amazing this place is.....i feel humbled x1000 after seeing
what other parents are going thru that makes our situation seem like
nothing. Once again, great perspective I will always be glad to have!
learned today that getting a second opinion (no matter how much time,
money, hassle, stress, etc it takes) is WORTH IT 110%!!! Dr Rutter
confirmed that Preston CAN and WILL have surgery early this summer to
begin the process of decannulation (fancy word for getting his trach
out). HOORAY! He is plenty big for it (24lbs to be exact). Dr Smith gave
us an indication this was a possibility but wanted Dr Rutter to confirm
and also give his recommendation on WHICH surgery would be the most
successful given Preston's trach site damage. It was the type of surgery
that was the big question. We have an answer! He will indeed have the
LTR surgery and it requires a posterior and anterior rib graft for this.
We have decided to have this done in Cincinnati under Dr Rutter's care.
We were very impressed with him. Once we got there, we just knew it was
where we needed to be. Love that feeling! The best news is he won't
have to go on bypass and have his chest cracked open for this type of
surgery. The other option required this and I was not feeling good about
it. HOORAY! He will not get the trach out immediately after surgery but
the goal is 6weeks- 3months after the stint is removed following
surgery. I don't have time to go into all of the details about what this
type of surgery requires but its the one we were hoping would be the
option suitable for him. We will also be working on the speaking valve
at home and capping him with a smaller sized trach following surgery. We
also prayed for this to happen this summer. Works out great with Tim
home for 3 months. This surgery will require several trips back and
forth to Cincinnati weeks following surgery so we will be traveling
fools in the coming weeks and if it means decannulation, we will live at
the airport! :) :) So its safe to say this trip was a total success.
Tim and I soak up the time spent with just Preston which are few and far
between. We can't wait to get back home to Reid (who is going to need
some re-training from the spoiling he is getting :)). God is good and we
are so incredibly blessed to have the most supportive friends and
family on the planet standing by our side during this roller coaster of a
journey :) Thank YOU! I should have a date tomorrow for surgery so that will be the next piece of GREAT news!