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 ♥