A Lil' Boy's Journey to Live….

Riley had a visit with Pulmonary today. Good News… He is finally on the chart at 10th percentile for both height and weight! There was also news today that wasn’t so good! Please Read Below ♥

Riley has a CCam in his right lung that he has had since I was pregnant. It has grown in size to the point that he most likely has no function in his right lung. The only option is surgery and Dr. Spray believes that Riley would not survive surgery, and there currently are no meds to treat it. The only option is transplant. ♥
If you look at the xrays below from Right to Left you can see a black mass in his right lung that gets more defined with time. It has also pushed his extremely enlarged heart over to the left. This is most likely why he is Sating in the 60’s now. The bottom line is there is NOTHING that can be done!! Sooo where I wasn’t in a rush for transplant because of the odds on the other side…. Now… We’re ready!! We haven’t fought so hard with cathing him every 8 wks and such to Lose him before transplant to this!!!
Please Pray for Riley… Pray that this CCam stays under control and doesnt continue to grow…
To hear this today and know there is nothing that can be done has just been heart breaking!! ♥
Riley is home and he is stable but it is believed that we are on the downward slope of this Journey. We Need to get Riley his Gift of Life before he gets to the bottom of this slope… ♥


Riley and Dr. Kreindler ♥


Riley Being Such a Big Boy ♥



Comments on: "♥ Riley Had What Turned Out to Be a Heart Breaking Visit with Pulmonary ♥" (4)

  1. Stefanie Derins -phillips said:

    Such a beautiful face ! I don’t think I will ever understand how this can affect innocent kids ! I know there are certain things we have no right to question. But I also know that there are so many BAD people in this world, they have intentially hurt people, with no conscience. Why kids ?

  2. Crystal said:

    I am aware of the lungs moving the heart. I know when I had ultrasound done on my heart, I asked why she is looking so low,,and he told me the lungs when damaged do move your heart. But what a sin, this CCam, is a tumor or an infection? To look at his precious face you just want to take him and run and hide. Knowing that wont prevent is illness to continue but hiding him feels like it keep him from any more harm. He likes Thomas I see and tattoos, too cute. I am sending my prayers that he receives his Gift of Life soon. If parents would only realize to donate their loved ones organs can save another child, and that Family would not have to go through what they have just gone through. But when it comes to children we crushed if anything happens to them. But many parents would not even think of donating, it is the Doctors whom have to start suggesting donating. It was found here in Nova Scotia that the Doctors or Nurses are not asking that question once a loved one is lost. I pray to God his miracle happens and very soon for Riley.

  3. Crystal said:

    I just watched his youtube video. It brought tears to me eyes when I think of my 4 year old Grandson. Little Riley is missing out on so much a child his age should be able to do. And I know how frustrating it was to wear O2 24/7, what a sin he must experience that as well. Now does he try and take it off at times, or does he realize it helps him to be able to breathe and be able to do things, and if he takes it off he will get weak and tired. So much for a little boy to have to go through. It is so not fair to that little Angel. I must say as well, you as Parents are so strong. I have no idea how you do it. I realize you must have your moments when you do nothing but cry and pray to God to help your little boy. You have so many praying for him, and following his story. Somewhere, someone will be your Hero and donate organs for your baby boy. I can feel it, his day will come and when it does, so many of us will be shedding tears for his recovery. I just want to give him a big hug, kiss on the cheek and tell him everything is going to be OK.

  4. Carol, I am so sorry you are even having to say that not to mention live it. But I know how strong you and Riley are, there is still HOPE and I will be praying for that gift of life for NOW!!! My heart and thoughts are with you, I just can’t imagine but I admire your strength in even sharing this info. with us. Many heart hugs and prayers from Joy and Jilly!!!

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