We have now been here at SickKids for 29 days
and I know that we have a long way to go.
Brody is handling it the best that he can, but it has been a challenge
for all of us. We have good days and bad
days and thankfully today was a good day.
I haven’t written in over a week and a lot
has happened since then. Brody was in traction, out of traction and back in the vest. The vest did not relieve the pressure the way
it is supposed to and it was not straight when they put it on, so Brody had to
come out of it and be put back into traction again. It has been very hard on his little body, but
his spirit is bigger than a gladiator, so he has overcome these obstacles time
and time again.
We ended 2015 this year in the hospital and as a result spent TBC’s 8th
birthday, New Years, and all of the winter break here at SickKids.
For their 8th Birthday (I still cannot believe I have three 8 year olds!), we tried our best to make it as fun, happy and celebratory as possible. The nurses sang happy birthday with cake, we gave the kiddies their presents and I decorated Brody’s room to make it extra special for everyone. Taylor and Cole had a wonderful day, but despite all of the birthday distraction, to be honest – it was a tough day for Brody. He was in a lot of pain yesterday and it was a struggle to get a smile out of him. I wanted him to just be comfortable and happy and there was nothing I could do to see that gorgeous smile on his face. Instead the entire afternoon and evening was x-ray after x-ray and a lot of repositioning in the bed – which can be very painful when you are in traction. It was hard for him and impossible for me to watch my love struggle the way that he has. By the evening we finally got it right and he fell asleep. Once I knew he was settled, I could finally breathe again.
The thing about Brody during this whole
ordeal is that he only complains for things that are really bothering him – the
rest of the time he is happy and content.
He has handled this like a champion and I am so in awe of him and his
spirit.
We make a good team, Brody and I. I get him and he gets me. We have been working with each other to make
sure that he is comfortable. Because
Brody does not communicate verbally, the staff here (to no fault of their own)
doesn’t always know how to communicate with my son. So, as his mom I have to also be his voice
and of course his advocate. He lets me know when things aren’t quite right and
what he needs and I do my best to communicate that to the team. When the halo
is off center or he has slipped to the side, he lets me know, I let the doctors
know and things are dealt with. When he is pain, I figure out where and how
based on his way of telling me and I let the nurses or doctors know and we work
together to make him feel better. It is
the best we can do before we get Brody a communication device that works for
him (boy am I anxious and eager to finally have one).
Anyone who knew Brody prior to this
incident would know that he was a sensitive boy who was almost always
uncomfortable and seemed to be in pain a lot of the time. Now we know why he was so irritable and
everything makes sense. His personality
has completely changed since relieving the pressure off his spine through the
halo and traction. He is now content MOST
of the time and is a very easy going boy – something he has never been. I am so
excited to get to know the real Brody.
The Brody that isn’t living in chronic pain. The Brody that will have a communication
device that works for him so that he can tell us exactly what he thinks, feels
and wants. I cannot wait for his
exciting future, which is full of potential and hope.
I cannot wait to make it up to all of my
kids and give them the fun birthday and break that they ALL – we all - deserve. It has been more than tough on all of us.
So in terms of the plan moving forward, the
holidays have made things much slower than usual because not all of the staff
is here. I am looking forward to Monday
when Dr. Drake (the Neurosurgeon) is back to let us know the plan and of course
the surgery date for his spinal cord decompression, spinal fusion and
correction surgery. It is likely that it
will be next week but we will not know until Monday. I will keep you posted.
Thank you everyone for the love, support,
wishes and thoughts.
All my love,
Dana
xo
P.S. HAPPY HAPPY BIRTHDAY TO MY BROTHER JORDAN! "Uncle Jor Jor" is the most amazing uncle to Taylor, Cole and Brody and always steps up to the plate in every way. He has slept over at the hospital with Brody a number of times and is always there for me as my brother. I love you Jordan. Thank you for everything.
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