A Lil' Boy's Journey to Live….


Hi…Sorry I haven’t updated.  Riley came home from the hospital on Monday.  Things went just as before…they lost the pulse in his foot from doing the Cath.  This time, though, he actually had a doppler ultrasound done that showed a clot.  There was blood flowing around it, but they wanted it to clear.  So he was on Heparin for 4 days.  Being on Heparin means getting alot of blood drawn for Riley.  Half the time that he was stuck they weren’t able to get anything.  His poor little hand, arm, and foot.  They are all bruised now.  When we left the hospital Dr. Rome decided to put Riley on Plavix.  It’s not really formulated for children, so we can only get it at CHOP.  The hope is that it may help with the scar tissue forming in the veins.  It will be a God sent if it helps.  The veins are Riley’s main issue.  (It tops the list of all his medical issues.)
Anyway….Dr. Rome used cutting balloons to open two of Riley’s veins.  He told us to be prepared for them to become obstructed again.  He said there is a 0 to 1% chance that they WON’T obstruct, but he wants to give that a chance.  If they do obstruct again he will, then, put stents in those two veins.  I asked if we were, now, headed back on track to Stage 2, and he said no.  We are headed nowhere.  We can’t do or plan anything until we see what the veins are going to do.  So that is why we are now taking things wk by wk.
Today Riley went to CHOP to see Dr. Szwast, and to have a baseline echo done.  Dr. Szwast says that Riley’s lips looked pinker then they did before Friday.  I never thought that he really looked that blue, but she has the professional eye.  Riley is still right below 11 lbs.  We were discussing him needing to gain weight.  She brought up the G-Tube again, but she is going to give us some more time.  If we could just get Riley to stop throwing up all the time he would gain weight.  Shes hoping, though, that the 27 calorie diet will help.
Riley goes back, again, Oct. 8th for a sedated echo.  So we have a month to pray….pray…pray!  We need to have an echo that isn’t bad news.
Until later…..

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