Tuesday, August 31, 2010

Congratulations Miracle Mason! Happy 33 Months!

(I started this on August 31, but am just now
finishing it on Sept 4. Life is very busy!)

("My future is so bright I gotta wear shades!")

Mason has had another busy month in and out of the hospital,
cardiology clinic visits, blood draws, attending his aunt Bridgette's
wedding, and just trying to keep up with his big sis and brothers!!

At 33 month old, Mason weighs 26 lbs (was 27 lbs, but lost
weight from the pneumatosis), is 33 inches long, and has O2 sats
here in Utah between 94-98% (They were a little better in Cali at
sea level, but not bad now living at 4500 feet elevation!) Mason still
struggles with being painfully shy, as well as experiencing steroid
induced grumpiness. I pray his happy little personality and darling
smile will shine through more and more as he realizes we are
home to stay, with only short visits to Primary's and Stanford......
AND as he can come down on and eventually off the yucky steroids!

A few more tid bits of information about our Miracle Mason:
The Cyclosporine he is on presently for anti-rejection has covered his
cute little body in lots of hair. He is like a little teddy bear!!
It has also made is hair much darker.Our plan is to switch to
Prograff, that does not have this side effect, as soon as Stanford
gives their permission to stop the steroids, which will probably
be at his year transplant anniversary. Stanford's team does not like
their transplant patients to be on Progragff and steroids together.
They have seen issues with blood sugar problems when these two
meds are taken together. (The extra hair is cute now, but not
something I want him to be teased about in kindergarten!)

Mason also loves to spend time in the shower. He does not like baths
though. What a funny kiddo! I can sit him in the shower with me while I
shower, but when I'm ready to get out he is not!! I ask him if he's
ready to get out and his answer is always "NO". So I leave him while I
get dressed and ready for the day......and then he STILL doesn't want to
get out! Well, at least I know where to put him to keep him occupied.

Here are a few pictures from this last month:

We've had trouble finding the right balance for Mason's
blood pressure meds lately. (He takes them because steroids
cause high blood pressure.) Either his pressures get too high
or he falls asleep in strange odd places at odd times. Here he fell
asleep on the family room step and of course w/ his blanky.
Too bad I still can't get him to sleep through the night though!!!

Here's Mason on our couch after we came home from his
aunt's wedding! Luckily she had an outdoor reception. I was
able to take Mason (armed w/ sanitizer) to enjoy the celebration
and not worry too much about germs (well, at least not as much
as if I'd taken him too an indoor party). He was worn out from
the long evening & fell asleep within minutes of getting home!

Mason does love to be outside. Here he is with big brother
Preston enjoying some skateboard rides on the deck.

We took our kids and some of their cousins up the American
Fork Canyon to roast marshmallows and make smores.

Then summertime fun was spoiled by a 10 day stay
at Primary's for pneumatosis! But at least Mason was
supplied w/ plenty of toys by Child Life to help pass the time.

Oh no!! A scary seizure like event ended Mason up in the
CVICU for 2 days and on the ventilator for about 7 hours.
Unknown what it actually was, I'll explain below what is the
most likely explanation. Hopefully it won't ever happen again!!!

Here is Mason soon after getting off the ventilator.
He was very exhausted from that days unexpected event!

Although, it didn't take him long to ask for a wagon ride,
his favorite past time during hospital stays (and at home).

This was quite an appropriate pair of pj's to be wearing
in the hospital since getting much sleep there is a joke. Mason's
pj shirt reads, " Don't Wake Me! I'll Wake You!" All the nurses
and doctors commented on "how cute" but it sure didn't keep
them from coming in and waking us way too often!

I think Mason should win "The Best Bed Head" award.

On our return to the 3rd floor, the Child Life specialist was so
good to Mason. She went out of her way to try and make him
happier about being in the hospital. He loved the police car
jumber/exersaucer she brought into our room. He didn't want
to get out, even when we we were discharged and ready to go home!

Congratulations my dear Miracle Mason on meeting another
"month birthday"! You continue to exceed the expectations of many!!!
We love you sooooo much and look forward to many many more birthdays!

What possibly caused the scary event which sent Mason to the CVICU?
When talking with the attending doctor in the CVICU about Mason's episode, after his MRI came out normal, he explained that it may have been something called a Vasovagal Response. (Click on vasovagal response to learn more.) In my own words, this is when a person experiences a slow pulse, holding of the breath, a drop in blood pressure, and sometimes fainting and or convulsions, caused by a sudden stimulation of the vagus nerve. Mason had vomited bubbly, watery stomach acids several times that morning previous to his episode. So possibly he was beginning to reflux and vomit this acidy vomit again and it stimulated his vagus nerve in his esophogus, causing a VASOVAGAL RESPONSE which can look very much like a seizure. Could it happen again?? Possibly, but hopefully not!!!

Mason and our family send our LOVE back to all his dillgent fans and blog followers and a big THANK YOU for your conitued prayers.


Erin B said...

Yeah Mason ~ So happy you are home with your family. I hope you can get off those steroids soon but if not, tell your Mom you want to start lifting weights and bulk up:) I pray for you and your family every night, that your heart will continue to get stronger each day. Take care Cutie and remember, there's nothin' wrong with a little extra sleep :~)

The Simmons Family said...

Thanks for the LONG updates.. LOVE them!! I'm glad Mason is doing so well and the teddy bear look will be gone soon. I'm glad you're at home and life is back to a 'new' normal.

Jennifer said...

MASON!!!! I love your P.J's almost as much as I LOVE your bed head!!! :)

I hope the siezure thingy never happens again too!!!