A Lil' Boy's Journey to Live….

Archive for February, 2009

2/25/09

Well I wouldn’t say that today turned out to be the day we were hoping for.  Riley did not have
a sedated echo.  There was concerns that he has started gagging again, and after the last echo
it took a little longer then usual for him to wake up.  This with some other factors lead to Riley
having a regular echo.  Not fun…..he hated it, but bottom line…..Riley has been scheduled for a
Cardiac Cath on Monday March 2nd.  We know that at least one of his veins needs to be dilated.
However, unfortunetly, once Dr. Rome is in the lab things always appear worse then on echo.
Needless to say….I shed alot of tears today.  Nothing that was said is new…it’s just reality everytime
you hear the doctors saying it.    It just feels like we don’t really live…we just wait for the next appt.
Soooo…..we don’t know what they will do exactly in the Cath lab on Monday.  They don’t even know.
It all depends on what they see when they get in there.
 
On another quick note…..to all of you who have given donations….THANK YOU!  I have received some
in the mail, and some from Jackie or Christina.  I have your names…I just cant get to them right now.
Just know that we are eternally grateful for all of you!!
 
Please pray for our Riley.  I think another hurdle is ahead.  We have to get over it!!  There is no other way!
Besides…..Riley has a first birthday coming up!!!
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2/14/09

Everyday we try a little bit of baby food.  It’s a very slow process! 
Here is a pic from today!
 


2/11/09

Well…Chris kinda stole my thunder with the Thank You’s for the fundraiser for Riley
and our family!  We are grateful to every person she mentioned and more.  First the
Conolly girls.  Kim, Christina, Jackie and Joey…..Thank you so much for everything
you did to organize and have the fundraiser!  It is crazy how the world works.  I would
have never imagined, last yr at this time, sooo many people caring for my son and
my family.  During this time there has been family and friends to dissappear, and family
and new friends to gain.   For anyone that doesn’t know…I probably haven’t seen my
cousins, the Conollys, in about 10 yrs or so, until last Christmas.  For them to have stepped
up and held this fundraiser for Riley and our family is truly touching.  It’s a feeling of love
that we will forever cherish.  We Thank You from the bottom of our hearts!
Thank you, also, as Chris said, to everyone who came out in support of Riley!  It was
nice to see family and friends.  Thank you to all of the wonderful people, most of you
strangers, who gave donations.  Your kindness is overwhelming!  I never realized how
many wonderful people were in this world until our life was blessed with Riley.
Now we move forward to the sedated echo on the 25th.  Fingers Crossed!! 

2/6/09

Sorry I didn’t update sooner…..We went on Wednesday, and saw Dr. Nance. 
He replaced the gtube that Riley had with the button/ Mic-Key.  Riley originally had the button,
if you recall, but it fell out the day after surgery.  The changing of the gtube went pretty smoothly,
except for the fact that Riley’s earlier feed was squirting out of his stomach.  I know that sounds pretty gross,
but that was really the only eventful thing that happened.  Dr. Nance didn’t believe that the stoma
was infected.  I say that because a nurse that was here last wk believed the site was showing early
signs of infection.  This was quite a relief because since Riley doesn’t have spleen an infection
would have landed him back in the hospital.  The doctor thought it looked irritated, and gave me
some cream to put on it.  It already looks better.  The other gtube had a disk that sat on his stomach,
and now that it is gone the irritation has improved.
So now we get use to another piece of equipment, and more supplies.  I just have my fingers crossed
that it doesn’t fall out or anything crazy like that.  I do need to check the water in the balloon every
so often.  The balloon is on the inside, and keeps the gtube in place.  So….Becca if you are reading
this…how often did you chack the water in Ryan’s balloon, and how often do you check it now? 
Figured that was just as easy as writing in an email.
Now if we can get him eating things orally again.  The bottle is out, so we need to move forward
to food.  Speech Therapy has been here.  His Therapist is great, but it is a slow process.  He doesn’t
really want to be bothered.  I think the hospital has warned him away from anyone who seems to be
doing anything to him.  Even though the therapist is doing nothing like a nurse or a doctor in the
hospital he is still leery. 
It is so hard to believe that he is 10 months old.  Yeah he does look great, but he looks and acts more
like a 6 month old.  We are still working on getting him to sit up, and to roll over.  He does also have OT
to help with these things, but we are being assigned a new therapist right now.  He did see his old OT
several times, but its alot like the speech therapy.  Things are moving pretty slow.  Well…everyone says
how babies grow up so quickly….I guess we are getting some extra baby time.
Next big thing is the sedated echo on the 25th.  This should be followed by a Cardiac Cath.  Hopefully
both will show that his veins are only still mildly obstructed, and we can move on to stage 2 of his heart surgeries.
This year needs to be different then last.  Usually the Cath shows things to be worse then the echo
showed, but that can’t happen this time.  Dr. Rome will only balloon Riley’s veins so many times,
and I’m not ready to start using those times up.  We need to be able to move on to do things that
will keep Riley here until he is an old man.  Whether that be the stages working, or him getting a
transplant. 
Soo..please…I ask again for everyone’s prayers. 

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