A Lil' Boy's Journey to Live….

Archive for April, 2009

4/29/09

Riley had his sedated echo today!  It confirmed that the one vein they saw the other wk is obstructed, and that two others are mildly obstructed.  The fourth looks ok.   Dr. Szwast spoke to Dr. Rome and he would like to wait a month and do another echo, and take it from there.  He feels that Riley is stable enough that he would like to wait before taking him back in to the stability lab, and ballooning his stents. 

So…another month we wait!  The hope is that the scar tissue will start to slow its progression.  Dr. Rome will continue to go in and remove it, but ideally we would seriously like the vein conditions to improve.  We can not move forward…..to do anything…with out stability in his veins.  Dr. Rome is looking for four months, and we cant seem to get past 6 wks. 

Just pray that Riley’s Pulmonary veins will finally stop or at least slow down forming scar tissue.  It causes the obstructions.  Riley’s whole life is dependent upon the conditions of his veins.  Everyone always says how great Riley looks….even the doctors, but his insides show something totally different.  We need that to change!  Just Pray!

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4/15/09

 

Riley, Ryan, Sean and Carol                                    Riley, Ryan, Sean and Darren

 

                              Ryan saying….”come on Riley…wake up:)”

Well….as you can see from the pics above….today was a day at CHOP! 

First, the pictures……This is the McClain family.  We meet last year….April 5th to be exact…in the CICU at CHOP.  Ryan was born with Hypoplastic Left Heart.  Soo…anyway we were “podmates” for about two wks.  Unfortunately…Rebecca somehow escaped being in a picture, but she is Ryan’s mom.  Anyone who keeps up with Riley’s website probably has already figured that out.  It was REALLY GREAT to see them today at our little mini reunion.  Last year at this time I somehow seemed to talk to Sean alot more when the boys were first born and having their first surgeries.  Reason I say that is because Sean was there…..in our little locker/sleep areas……and let me ramble through my emotions, not to mention hormones, and was a witness to many a tear shed.  So…Thank You Sean for being you, and being that ear to me last year when this whole journey began!  Rebecca…Thank You for taking over where Sean left off!  You have been a great contact over the last year, not mention a great support!  Also thank you for offering, and helping with Riley’s benefit even though you are so far away.  In all…..anyone who doesn’t know the McClain family should!  They are an awesome family, and heart parents like us. 

Now back to our purpose for going to CHOP.  Riley had a echo, appt. with Dr. Szwast,, an appt. with the Dietician, and an appt. with a Nurse Practitioner( for the gtube).  The echo was a total flop…which I knew it would be.  The minute the tech even went near him he start freaking out.  Nothing was calming him.  So…next we saw Dr. Szwast.  She said that the tech was able to view one vein, and it looked obstructed. (UHHHHH!!!!!!) Riley now is scheduled for a sedated echo on the 29th of this month.  Pray to God that its just this one vein, and that its not that bad!!!  PLEASE!!  Dr. Szwast also discussed Riley with Dr. Spray, his heart surgeon.  In short….Dr. Spray agreed to doing a heart transplant on Riley, however, he said there is nothing he can do surgically to Riley’s pulmonary veins.  He said that we pretty much will have to rely on the stents.  He also believes that even after Riley were to get a transplant that he would still be going in for Caths to have his veins(stents) ballooned.  Soo….nothing is happening now.  Having Dr. Spray agree to transplant is not the end all.  There is a whole team of doctors that need to agree, and in the past they have nayed listing Riley.  Plus there is an issue of when.  Right now Dr. Spray thinks Riley is well enough not to be listed, yet, but at the same time you don’t want to wait until he is sickly.  Plus….it always goes back to the veins.  They have to be stable enough to support a two ventricle, fully functional heart.  They haven’t shown that stability, yet.  Again…..PRAY!!!  Next Cardiology appt. is the 29th.

The Dietician discussed changing Riley’s formula now that he is one.  Most children are done formula at one, but Riley gets all his nutrition from it.  We’re working on the eating baby food, but its a slow process.  Anyway…this new feed may be covered by insurance since he is feed via Gtube.  That would be great because right now we spend almost 50 bucks a wk on formula.  So well see.

The Nurse Practitioner checked Riley’s button…per my request.  I’ve never dealt with a Gtube/button before.  I wanted to be sure the stoma sight looked ok, and the button was still fitting right.  The site is irritated, but that’s to be expected.  It’s like always having an open wound.  The button also was fitting ok.  She took measurements to be sure.  We did change the button, though.  Really just to do it.  They should be changed about every three months, and we were getting close, and this way we could do it with supervision for the first time.  Actually Darren did it.  Unlike the NG tube….I would have done it because it really is pretty easy, but he wanted to try doing it.

Now……it’s late…..I have more to add about how wonderfully our night ended, but it will have to wait till tomorrow:)

 

 

4/6/09

Pop-Pop and Riley…trying out his new pony..

  Riley in his walker…outside

Riley’s Birthday

My Three Kings… 

Aunt Debbie and Riley 

Daddy and Riley Riley and Aunt Chris

  

 Riley and Aunt Pat

    

“Yeah…I don’t do Cake!”

“I’ll take the plate!!”

Riley and Aunt Terry Riley, Jackie and Dennis

Michael and Riley Riley and Christina

  Riley and Aunt Jane Riley and Granny

Pop-Pop and Riley

Pop-Pop, Granny and Riley 

  Mommy, Riley, Aunt Chris and Aunt Terry 

The Family…..

Aunt Terry, Riley, Christian, Granny, Donny, Pop-Pop, Gee-Gee, Michael, Mommy, Daddy, Aunt Chris and Uncle Lou

Riley’s Birthday was a Great Day spent with family and friends!  There were many more people there that are not pictured.  Reason being…..Chris gave me a disk with 300 pictures of Riley’s Birthday.  How do I decide what to post?  Sooo…I put up pictures that had Riley in them.  To everyone else who isn’t pictured….Thank you for coming and celebrating Riley’s first Birthday with us!  Thank you for all of your wonderful gifts!  An extra special thank you to Kathy for making Riley’s beautiful Elmo cake.  I wish you could have came back and enjoyed it with us!  Aunt Pat, Aunt Chris and Aunt Terry…..Thank You for everything you did to help bring Riley’s big day together!  Thank you to Granny and Pop-Pop for opening your home to all of us so we could celebrate Riley’s life together!  It was a BEAUTIFUL DAY:)

Riley’s Birthday

Here are pics from yesterday more to come!!!

4/4/09

Happy Birthday to Riley…..
Happy Birthday to Riley….Happy Birthday Dear Riley….Happy Birthday
to You!!!!!!  I LOVE YOU:)

4/3/09

Here is a pic of Riley when we were at CHOP!
 
Sorry I haven’t updated…..Yes we were at CHOP in the beginning of the wk for two days.
Riley had gotten a fever and the poops and off we went.  We came home on Wednesday.  Yesterday,
though, he was worse then he was in the hospital.  I called the fellow and they pretty much said
it was the virus running its course…just make sure he stays hydrated.  So we are slowly on our
way back to normal minus the extremely raw behind:(
On another note….I have to share another example of wonderful people.  I was just at Sears
trying to find an outfit for Riley to wear tomorrow for his birthday.  Anyway….I was at the register
and talking to the woman behind about the clothes I was buying and of course that led to Riley.
Well as I went to give my things to the cashier the woman said she was paying for it!  WHAT!?
This was a complete stranger.  Of course I told her she didnt have to do that, but she said she
knows she doesnt but she wants to and she can.  That being said….THANK YOU!!  I will always
remember your kindness!!
I would also like to thank everyone else who continues to send us donations!  All of you are
heaven sent!!  Thank You:)
Tomorrow Riley will be ONE!!!!  HOORAY!!!!  If you are not celebrating with Riley….celebrate
for Riley!!

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