A Lil' Boy's Journey to Live….

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:)

 

 

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Comments on: "4/15/09" (1)

  1. Hey Carol. It was great to see you guys too. Thanks for posting the pictures. I should have thought about getting one with you and Rebecca with the kids. Duh! 🙂 The reason I disappeared over the last year is mostly due to my job. I used to be able to do email and blog posts at lunch at my old job. Now I\’m in an area where I can\’t do that. It\’s like being isolated. I could get on the computer when I get home, but by then I\’m too tired! I hope the g-tube is going better. We still rely on it. Ryan just isn\’t big on eating PO.

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