10/18/10

Today Riley visited with both…Pulmonary and Cardiac Transplant teams. We see Cardiac every 2 weeks and Pulmonary every 4.
I guess the good thing would be there really isn’t much to report medically! Riley’s pulse ox was in the low 70’s……..even high 50’s-60’s in pulmonary but HELLO that would have alot to do with why he is listed for transplant!
Anyway….When talking with Dr. Goldfarb we did discuss post transplant some and he had said that new reports had been published regarding survival post heart-lung. The last update was like 1998! He said that there had been great improvement in Children Riley’s age group as far as survival rates. He wouldn’t throw out any numbers (Smart Doc) but told me to go to this website that would give me all the numbers. Thank you, but no! Not now anyway….♥
Riley then saw Dr. Hanna. He is NOT scheduling a Cath!! Not this visit anyway! Does make me a little nervous when we start going off course cause last time veins started disappearing! Like Dr. Hanna said, though, there is no good answer, but he feels at this moment if he were to send Riley into the Cath lab and he were to Stroke that he wouldn’t be able to justify having done the cath that lead to the stroke. I get it. He actually told me that I get it in my Head, but that he gets it in his Head and his Heart! Sooo….ok then!
We will go back in 2 weeks and take it from there! Unless.. of course.. Transplant ♥ November 2nd will be one year that Riley has been waiting! I think he has done his time on the list and needs a chance at Life Now ♥
One last note…..Please keep my Fellow CHD Mommy Chris in your hearts and prayers ♥ Yesterday her Beautiful Baby Girl Emma lost her fight against Time! Emma was waiting for a Heart Transplant. I have cried for two days over the lose of Emma and she is a child I’ve only ever seen from a doorway, but I just can’t imagine the pain in her Mother’s heart….Or maybe I can and that is why my heart bleeds for her ♥ No child should be born having to fight to live like lil’ Emma and Riley and Soooo many other innocent children, but to then loss that fight ….Let’s just say…I have Alot of questions for God one day ♥

Thank You All…Always ♥

 

 

Riley’s visit to Pulmonary…..Mike (N.P.) and Debbie..Social Worker

Dr. Goldfalb with a Not So Happy Riley and Mike

 

  

Riley and Dr. Hanna…Being Silly As Always….

10/4/10

Today was a routine visit to see Dr. Hanna. Honestly there is not much to report health wise. (That’s a Good Thing) Of course labs were drawn, but we even have our girl for that, Regina, picked to stick Riley.(When you get to know the who’s… who at CHOP then you began to figure out who you want and who you don’t!) There weren’t any results back while we were there except his hemoglobin’s that were like 18.5. Yes to anyone who knows that is high, but for Riley his are Always elevated. He will have labs again in 2 wks. Fun.
Dr. Hanna said his main purpose, at this point, in seeing Riley every 2 wks is to be sure that he is Healthy and Ready for Transplant!!
His Pulse Ox was in the low 70’s, but he has been trending downward. That is part of the reality of waiting for transplant. Watching your child get sicker. He will most like get Cathed again after his next visit to see Dr. Hanna in 2 wks.
On another note…while at CHOP we ran into our Original Podmates… The McClains. They have since moved to upstate NY, but we are at CHOP pretty often and we have been lucky enough to see them there on the times that they have brought their son Ryan down. Rebecca and Sean were at CHOP the day I found out that Riley was going to need a heart-lung transplant. Ryan was having an MRI the same day as Riley’s cath. I am so Grateful to Sean and Rebecca for that day. I was a Mess….we had just been told…my family hadn’t arrived yet and there I was crying to them! So Thank You Guys ♥ Anyway..it was nice to see them today even though it was brief. However…Never got to say Good Bye….So Rebecca…Until next time ♥
Now back to waiting ♥ I said to Dr. Hanna today that November will be a year that Riley has been waiting. He said its hard to believe that its been that long, but that Riley is ok and is READY! He said we could be waiting longer then November but that its OK. Sooooo….OK ♥ What else can one say? Cant make the organs appear ♥
Thank you all for your continued Love and Support…… One Day … when he is Old and Gray Riley will know how much he was Loved ♥

 

Darren, Rebecca, Ryan and Riley

 

 

Riley with Dr. Hanna and Laura (NP)