When we last left you we were heading into the removal of
cast 1 and our weekend of freedom. IT.
WAS. GLORIOUS. The weather cooperated and it was a perfect warm but not to hot
and a little windy cape cod weekend in late August.
CAST OFF AND THE MRI
We started out Friday getting the cast off in Boston at 8am
followed by the dreaded MRI at 10:30am. Remember, this MRI would let us know if
there are any underlying issues driving Addison’s curve. First stop at the
“cast room” to saw this thing off! Naturally Addison is very scared but
Joe the cast tech does his best to calm her and make her laugh. We are reminded
that cast saws don’t spin; they vibrate, so there is never a danger of her
being cut. Two quick saws and she is free. Her skin looks profoundly damaged
and irritated. One of the biggest casualties in this casting process is the
damage to the skin. A nurse comes to examine it and see if Addison is in good
shape for her re-cast on Monday. The good news is she is (no broken skin or
lesions).
We head to the MRI room. By the time we get there the air
has had enough time to let Addison’s skin know it is ANGRY. She is itching like
crazy and just getting more and more red. They’ve told us this is normal and
actually she is in better shape than most kids. We do what we can to distract
her. The wait for the MRI is long, sitting in the tiny room giving all of her
medical history again. This time they want to give her the IV while she is
awake (no fun). One parent can stay with
Addison through this. We decide it’s Dad’s turn to hold her hand through the scary
stuff. So he is suited up and off they go for what will be a very long hour.
The MRI tech will painstakingly go through every vertebrae in A’s spine to look
for abnormalities. Also, they will check for a tethered spinal cord or any
other possible damage to it.
Off to the waiting room I go, alone. I’ve decided MRI’s
suck. I feel while they could deliver good news, it seems its never just ok
news. Its good or it’s devastating. So while I wait I am having that moment
when you think, “it can’t happen to me”, but there you are waiting for your 2 year
old to come out of an MRI and realize it very damn well could happen to me! As I hang on to the edge of a black hole
of bad thoughts trying not to get sucked in, the Children’s Hospital clowns arrive. “Ugh, not now. No clowns.”, I think
diverting my eyes to the floor. This room has no children in it. Just long
faced parents sitting silently. The clowns launch into a gentle, age appropriate, elevated level of humor that you cannot help but laugh. Suddenly I was gently
lifted out of my funk, and was smirking along with all of the other parents. It
was impossible not to. Today the clowns were for the moms and dads. Excellent.
Addison is in recovery now and it takes her a little longer
than usual to come out of the anesthesia. She has only had the gas before today and
this was an IV sedative. When she finally wakes up she is absolutely loopy, laughing, talking about Elsa and Anna from Frozen and making zero sense. It was pretty funny to see my 2-year old like this. Then that wore of and she
cried hysterically for a while. Finally that wore off and we were ready to head
home.
INTO THE WATER
First book of business once we get home is a bath! It’s been
2 months since she was had a full body bath. Tub full of bubbles and warm water,
then the several lotions and potions I have found to try to help that red skin heal
in two days. I used Damascus rose with lavender and chamomile oil as well as
“Emily Skin Soother” which is an all natural balm containing olive oil, beeswax
and herbs. They were helpful although I am not sure anything could have fixed
that skin in 2 days.
We met friends at the beach both days. Her skin was in such
tough shape that I cancelled plans to meet friends at their pool. The chlorine
seemed like a bad idea. Even the sunblock was too drying. Addison only had one
bathing suit this year that was a gift. Once we knew about the cast I didn’t
bother getting swimsuits. So, here she is in her brothers UV safe one piece. TWINS!
CAST #2 GOES ON & THE MRI IS NORMAL!
The weekend went by way too fast and here it is 4:30am and
we are driving back to Boston for our 6am pre-op time. Again only apple juice
for Addison until after the cast is on. We are all getting used to the drill: wake up ungodly early, 1.5 hour drive, park, check in, wait, wait, wait.
It’s my turn to head to the OR with Addison. Unfortunately
we did not luck out this time with her falling asleep ahead of time. So she was
screaming and crying as I held the anesthesia mask over her. I doubt this part
will get easier. A quick 45 minutes
later and her surgeon emerges to tell us she did very well and he was happy
with the results he got getting her straight in the cast. He also delivered the
news that her MRI was normal!! YAHOO. So Addison officially is diagnosed with
Idiopathic Infantile Scoliosis. Which means we don’t know why it’s curving.
This is one of those times where no news is good news. If there were something
else going on in her body, the battle to straighten her out would be
significantly harder. We have a very good chance that this cast process will retrain her spine to grow straight.
Naturally we stared at her back all weekend debating, “does it look
better?” The moment she came out of the cast she appeared totally straight!
However as the weekend went on we could see the bump at her ribcage grow as her
body settled into not having the cast to hold it straight. We asked Dr. G. when
we would re-xray to find out how she was doing, because it’s entirely possible
that this is doing nothing. It’s not probable but its possible. He informs us
that there is no reason to re-xray until we have been doing this for 10-12
months. Then based on that we decide if we move to a brace or if we should
continue with the casts.
We head down to recovery to see Addison and she is pretty
hysterical. These drugs send her into a tizzy when she is coming out of them.
So for 45 minutes she screamed. Unfortunately, we were also pretty stressed out
ourselves. We had been up since 3:30am and it was now noon, our conversation
with the Dr. did not deliver the totally unrealistic expectations I had (that
she’s miraculously cured and no more casts), seeing her back in the cast and
her screaming bloody murder was also depressing and very stressful.
We go over every edge of the cast to make sure nothing is sharp
or digging into her skin. Everything looks great; thank god no extra cutting is
needed. John the hippie nurse stocks us up with extra moleskin for the cast’s edges
as well as some apple juice for the road. He was so calming, slow moving and
kind. He slowly attended to Addison’s IV
and heart monitor wires, which made her scream more. He slowly removed her IV
that splashed blood onto her new white t-shirt that we can only change once a month. He
told stories about his own family. He is a saint. However for any type A people
out there, you may understand, in these overtired, stressful situations we like fast
moving, take charge types that are actually abrupt and maybe a little rude. Just get it done! AHHHHH.
John was chamomile tea in a tequila shot moment. I hope we see him again
through this process when Addison is not screaming her lungs out. He was interesting to talk to. Finally the screaming stopped and we got A dressed and headed to the
car. Back to life in the cast. Total
bummer.
Thanks to all for reading about Addison's curve and following us along our journey.
xo
