A Lil' Boy's Journey to Live….

Archive for July, 2008

update

Today Riley had his post opt appt. with Dr. Szwast.  Jackie came with us.  Riley is doing good.  His BP was 102/62, heart rate was 135, and Pulse ox. was 92%!  His weight was 10 lbs. 2 oz. (which we will have checked Friday at his primary)  Dr. Szwast removed the stitch from his chest tube.  I also asked her to tell me exactly what Riley has wrong with his heart.  Soooo….Riley has Complex Congenital Heart Disease….Heterotaxy Syndrome (Asplenia Type)…..Total Anomalous Pulmonary Venous Return (TAPVR)(Infradiaphragmatic)….Single Ventricle….Right Ventricle to Aorta with Pulmonary Atresia….Bilateral Superior Vena Cava, and Malrotation!  Did you get all that??
She said that Dr. Spray will probably want to do his stage 2 surgery closer to 8 months instead of 6 months.  All is decided by Echo and Caths in the end, though.  Riley will have another Echo at his next appt in 3-4 wks.
We also saw Riley’s old pod mate, Ryan today.  He looked great with his chubby self.  Becca had him here from upstate NY for his Echo.  Ryan is having his stage 2 August 13th.
Ok….well have to run…keep praying!!
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pics

Here are pics of Riley with his hockey stick from Riley Cote!  Thank you to Dennis for bring it to us, and taking these great pics!
 
Also…yesterday Riley got his crib!  Thank you to Chris and Lou for helping us to get it from Pop-Pop’s.  I know that Pop-Pop would have helped if he could!  Thank you Chris for coming to the house, and putting it together.  It was a task to do….having no directions!  He sleep in it last night, and the mobile worked wonders in the middle of the night when he woke up before it was time to eat again.

Thank you

Thank you to Riley Cote for giving Riley a signed hockey stick.  That was really wonderful!Our Riley needs your fighting spirit!
 

home

Hello…sorry it took so long, but we are home!  We came home from CHOP on Wednesday.  They kept Riley a couple extra days to try and get his feeding situation under control.  We saw someone from Speech Therapy, but she said that Riley swallowed good, and that there was nothing she could do for his gag issue.  He is, now, on 2 meds. for his reflux, though.  We really need Riley to gain weight.  The woman from nutrition said that if he doesn’t get to where he needs to be the thought of a G-Tube is out there.  Well….we certainly don’t want that so his primary has suggested baby fruit, and cereal by spoon.  Sooo…we started trying that yesterday, and I think he thinks it’s medicine.  We need to keep working on it!
Anyway….as you should already know…surgery went well.  I know my sisters, Terry and Chris, both updated while we were in the hospital.  Dr. Spray did a sutureless repair of the Pulmanary veins, and put a patch on the Pulmanary artery.  When he spoke to us after surgery he seemed very pleased with the surgery.  Remember….he fixed what he told me, when Riley had his first surgery, that he couldn’t fix.  I know that there is no guarantee down the road that the veins won’t get obstructed again, but for now we are in good shape, and looking forward to the Stage 2 surgery.  Riley will need another Cath. before the Stage 2 to be sure the veins are still in good condition.  They need to be in order to do the next surgery.  Keep praying!  Dr. Spray’s plan is to do the surgery around 6 months.  We are probably looking at sometime in the fall.
So….other then all that….we are home.  Riley should be getting his crib tomorrow.  He has been in the co-sleeper at home, but seemed to like the crib at the hospital.  So we have decided to move him to the big boy bed!
I also wanted to thank my sisters, Chris and Terry, my mother, Mary Kay, and Jackie and Dennis for coming to the hospital to visit us!  It means alot to me that you all took time out of your busy lives to come to CHOP.
Also…thank you to Terry for the goodies you brought me! 
Extra special thank you to Chris and Lou for keeping Christian.  Mary Kay…thank you for the time you spent with Christian on Sunday.  This situation, which has become my life, would be impossible to get through without all of you!  Thank You!!
 

Riley at CHOP for vein repair surgery


Pic from right before surgery!

Right after surgery


Mommy and Riley


Daddy and Riley


Mommy, Daddy and Riley


Marie and Donna (nurses)


Jen (nurse)…took care of Riley after both of his surgeries


 

7-13-08

Christian and Riley poses for some pics
Today we took Riley to see his Pop-Pop before surgery.  It was a little emotional!  My Dad has left Copper Hospital, and is now at a different facility until he can start Rehab. 
Aunt Pat was visiting also.

 

It’s hard to believe that tomorrow is almost here.  I haven’t really figured out, yet, how I’m going to get through.  I will do whatever it takes, though, as long as Riley gets through all of this.

The bags are packed.  Now the next step is to CHOP.  Please continue your prayers.  We are planning on having Riley Baptized before surgery.  Keep up with Aunt Chris for updates, and I will sign the guestbook if I get a chance.  Love you all!!

pic

Aunt Debbie came for a visit!

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