A Lil' Boy's Journey to Live….

11/26/08

Where to begin?  First…thank you to Julia for the BEAUTIFUL crib!!  Also Thank you to anyone who donated to Julia to help to get the crib.  Thank you to Ann from GCIT for your donation to Riley, and Thank you to School Based Youth Services at GCIT for the gift card to Shop Rite.  We also have received the check from the coin drive at Somerdale Park School.  Thank you to everyone who contributed and/or allowed your child to bring in their change.  We also received a donation from Mr. and Mrs. Dow when we got the check from Somerdale Park.  It is dated September, but we did just receive it, sorry for the delay in thanking you, but Thank You!!
 
Yesterday we saw the GI at CHOP.  We are going to add microlipids to his bottles to try to fatten him up.  We are also upping his Lansoprazole and Zantac to try and control the vomiting.  If these attempts don’t work we will try an NJ tube.  It is like a NG tube that goes through the nose, but it bypasses the stomach.  Hopefully, if need be, that will stop the vomiting.  We will save the Nissan and Gtube as a last option.
 
Today Riley had an echo and a cardiology appt.  He weighed 13lbs 5 oz, and is 25.4 in.  His pulse ox was 86%.  The echo didn’t seem to show any further narrowing.  I truly believed it wouldn’t after only two wks with the stents.  He will have a sedated echo on Dec. 17th.  The wk before Christmas.  That will be the test.  It usually takes about 4-6 wks for the obstruction to appear on echo.  WE NEED A CHRISTMAS MIRACLE!!  Something new today, though, is that Riley’s heart is "thickening."  If you look at his chest the left side is larger then the right.  Reason….the heart is a muscle, and like any muscle you work out it gets larger.  Well Riley’s heart is working hard to keep the blood flowing with only one ventricle.  Result….thickening.  Soooo…we have added a new med. Enalapril.  I think thats spelled right….Im reading it off a script.  Anyway…it could cause it’s own problems like turning him blue…lowering his pulse ox, but he needs it or his heart will continue to thicken.  Hopefully his dose is low enough not to cause a bad reaction, but still be able to help.
 
Dr. Szwast would still like to move forward with the Ladds Procedure for his malrotation.  We have to see first how the veins look in December.  She also would like to attempt to list him for a transplant if his veins remain stable.  Sooo….as always….it all depends on the veins.
 
Until next time….Happy Thanksgiving!!
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