A Lil' Boy's Journey to Live….

Archive for March, 2009


For anyone who doesn’t know…last July my father took a pretty nasty fall, and broke….
let’s just say alot of bones.  Anyway…last Wednesday he had to have a second surgery on
his elbow.  Due to extra bone growth after the first surgery.
Having said that…..I feel the need to share with everyone something that Mary Kay(Granny)
told me earlier.  After Friday, when my Dad came home from the hospital, he decided not to
take his pain medication.  He has just been taking Advil.  One of the main reasons being…….
he wants to be available, in a moments notice, if I need him to get Christian because something
is going on with Riley.
How wonderful of a father and grandfather is that!!??  The last thing I want is my Dad to be in
pain, but for anyone to suffer in anyway for the sake of another person is heroic!
Thank You Dad for everything you do for us!  Always know how much we love and
appreciate you:)


This was emailed to me from Karalyn…..
I cried when I read it, but I wanted to post it!
For all my fellow heart moms…Becca…Kim….Kate…and all of you whose names I don’t know!
When I Became a Heart Mother, by Stephanie Husted

When I Became a Heart Mother——One day my world came crashing down, I’ll never be the same…
They told me that my child was sick…I thought, am I to blame?  I don’t think I can handle this…I’m really 
not that strong…It seemed my heart was breaking..As I’d loved him for so long.  I will not give up on this child..
despite your best "advice"…I will give my child a chance…No matter what the price…And I will learn all that
I need..to help my child to thrive…I’ll even use that feeding tube..My child will survive! Will he require therapy?
What if he can’t gain weight?  Alright God I can do this…I will not curse our fate.  The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..How many parents would welcome that sound?  Tomorrow Lord, I will be kinder.
Another angel earns their wings..and I run to my sleeping child’s bed…I watch him then, for quite awhile…
(Bend down and kiss his head) Then I cry for the parent’s whose lives have been broken, and I look to God wondering why?
Oh Lord, I just can’t know your ways..No matter how I try, and yet, I trust You hold his life,
(and guide us through each day) My mind says savor each moment he’s here…But my heart whispers,
"Please let him stay".  From… pacing the surgical waiting room…to sitting by his hospital bed…From…
wishing for a good nights sleep…to learning every med…From… wondering will he be alright?  To watching him
reach out his hands..with every smile, my heart just melts..(despite life’s harsh demands)  For all who
see that faded line…I look to them and smile…You see my child is loved so much..I would face any trial…
That same scar I trace with my finger..(It’s the door to his beautiful heart)I never guessed how much I’d love him..
(Just as YOU loved him right from the start)
A heart mom is always a heart mom..(Now wise beyond her years)And for those who have angels in heaven..
Our hearts share in all of your tears..Everyday I will strive to remember..You chose me for him(and no other)And I will embrace that beautiful day..
When I became a "heart mother".~Stephanie Husted


Riley sitting in his Bumbo:) Missy watching

in the background…


It’s that time again…..time for another Thank You!  Yesterday I went to O’Hara’s
salon, on the corner to get my hair done.  Last Spring/Summer they had dropped
off a gift certificate to me just saying…" I Deserved It!"  Needless to say I didn’t use it
till yesterday.  Anyway….when I got there they we wonderful, and made me feel very
welcomed.  O’Hara’s seems to be a place where everyone knows everyone, and of course
I knew no one.  Sherry did a great job on my hair, and when I went to pay they wouldn’t
take my gift certificate.  They told me to save it for next time! 
How wonderful are people?!  Strangers doing the kindest thing! 
All of this, of course, though comes back to Riley.  People love him and care for him! 
I’m just lucky enough to be his Mommy:)


Riley had his follow up appt. today with Dr. Szwast.  Everything went ok.  I did learn, though,
that Dr. Rome did balloon 3 veins not 2 during the Cath.  However, the 3rd was not that bad.
He has been scheduled for an echo on  April 15.( See you there, Becca!)  It is not sedated.
We are going to wait 3 months to do a sedated echo, unless one is warranted sooner.
Other then that……Riley weighed in at 15 lb. 2 oz.  He has started the microlipids, again,
so hopefully that will help with weight gain.  Dr. Szwast also thinks that once Riley
starts eating solids his reflux will improve.
When we were leaving we saw Dr. Rycheck.  Riley has seen him several times on the
floor as an attending, but I saw him last year arond this time when I was pregnant.
He told me then that Riley had a 50% chance of living till he was 1.  So when we
saw him I said…well…Riley will be one in a couple wks….I guess we have past the
first marker!!  He said..yup….lets keep going!  Now he also said last yr. that after
one Riley had a 50% chance to five.  Soooo as always you see our journey continues!!


Riley hanging out in his Jumper:)


Riley usually has speech therapy on Mondays, however, Kris, his therapist called
and she had a cold.  So we decided to cancel yesterdays appt.  Anyway……………..
around 12:30 Kris shows up with groceries.  She said since she couldn’t do therapy
she had time to go food shopping for us.  She wasn’t kidding!  She came with
more stuff then I usually buy at the food store.  I told her she didn’t have to
do that, but she said she loves us and wishes she could do more!  Kris….you
are an awesome person!  Thank you to you and to Bancroft for your kindness!
Tomorrow….Riley sees Dr. Szwast.  There is no echo or anything scheduled.
It is just a follow up from the Cath.
There will most likely be an echo scheduled for 2-4 wks from tomorrow..
At our following appt. there should be some discussion about Riley having
a heart-lung transplant.  This really is not an option, but Dr. Rome would
like to discuss it with the group to get their opinion of the pros and cons.
We have been told from the beginning, though, that heart-lung is not
 a route we want to take.  There is like a 20% survival rate.  Yeah….I don’t
think so!!!  We will see, though, what the group has to say.  For now we
are headed down the same path.  Echos monthly and Cath probably in
3 months.  Cutting balloons seem to be the best route for right now, with
the hope that the scar tissue will eventually stop forming!  That would be
our prayers answered!!!


Riley and his girl, Jackie, taking a little snooze yesterday!

Riley playing with his piggies today!  Amazing what being home can do…


Sorry that I have not updated!  Things have been crazy!  We did get home from
CHOP last, though.  I have more to say, but not the time to do it right now.
I will update again later!

Heart Cath update ~ Evening Addition

Riley is out of the Cath. lab.  He was done around 2.  Dr. Rome had to use cutting
balloons on two of the veins he had previously stented.  He then put a stent into
the 4th pulmonary vein.  So Riley now has stents in all four of his pulmonary
veins.  Not exactly a great day.  Dr. Szwast did say, though, that his pressures
were down from before.  That is the pressure of the blood going through the
veins.  That is a good thing.  She also says the fact that one of the veins looked
great is good.  Yeah….this is called the doctor trying to make things sound good.
Anyway…..we basically went back to November.  We can’t move forward again.
We need several months of stablility.  Dr. Rome said moving on to stage 2
at this time would not be wise.  If Riley veins obstruct again after stage 2
it makes things more difficult…
So of course I asked what happens if in three months he needs to be ballooned
again?  He said…..I promised you I would do it!  Even though I dont want that
to happen….it’s comforting to know he’ll do it if need be.
Right now we are staying for the night.  Riley will get antibiotics and heperin
until tomorrow, and then be able to go home. 
He is VERY cranky!  It will certainly be a long night, but at least it’s only one.
Thank you all for your support!  As you see…the journey continues……

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