A Lil' Boy's Journey to Live….

1/21/09

Any one who has already read the updates on Aunt Chris’s or Granny’s page knows that today
 was what  I would like to consider a good day!  Riley’s veins appeared to be at the same degree
of obstruction as the last echo.  We will take that!  No obstruction would be better, but since we
know its there lets at least keep it under control.  His heart function appeared to be good, also.
The only real area of any concern today was his pulse ox.  He was running in the low to mid 70’s
most of the time, but dipped into the 60’s several times.  This could be caused by the Enalpril or
the shunt.  He may be out growing it.  He should have really had stage 2 between 4-6 moths
and he his now closer to 10. 
Soooo…the best plan is…..Riley has another sedated echo on Feb 25th.  Hopefully that will show the same
results as today.  Then at that point his veins will have been stable for 3 months.  He would then go back
in the Cath lab to have an inside look.  At that point……again best layed plan….Cath will show the same, and we
can move forward to stage 2.  At that surgery the shunt can be addressed, and would be moving forward
with the original…best…course of action.  Transplant is not totally out, but the thought is to move forward with
the stages, and see how he handles it.  If his veins could improve function without a transplant that would be fantastic.
If after moving forward with the stages his veins still aren’t continuing to improve he would then be listed.
Soo….we have gained another month!!
As far as his gtube.  Yeah it has its benefits as far as feeding and meds, but it still really sucks!  I just feel like our day
revolves around setting up feeds and giving meds.  Not to mention that the site is still fresh so its still ozzing, and
because its not the button, yet, it has this round piece that just sits on the skin, and is irritating it. 
It will be nice to get Riley functioning more like a normal baby.  He still needs to sit up
and roll over, yet.  Hopefully with the help of OT and Speech, to help with his oral intake,
we can get him where he should be.
Thanks again for everyone’s prayers and support!  I saw there were over 4,000 views of my page today.
Sorry I didn’t update everyone earlier!  It was just a long busy day.
Until next time….
 
 
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