A Lil' Boy's Journey to Live….

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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