A Lil' Boy's Journey to Live….

Archive for March, 2014

Lung Transplant has Made a Decision .. ♥

Riley had an appointment with pulmonary on Thursday. It was just a routine appt. without labs which made Riley Happy!
Dr Kreindler and Dr Goldfarb have been discussing Riley’s case apparently and have decided to move forward with a full body CT scan. We were scheduling a chest CT as part of his annual work up post transplant but with Riley having Epstein-Barr and some possible side effects from that they believe it’s better to do the full scan now rather then just the chest. We were going to attempt just the chest CT without sedation but with the change in scans comes a change in plans. First we know Riley won’t lay all that time so he will require cardiac anesthesia. Second this scan requires a good amount of contrast to be used. The extra contrast raises some concern for Riley’s kidneys .. which were in failure twice after transplant. So because of that concern Riley will most likely stay the night to make sure he is hydrated and the kidneys are handling the extra contrast. Of course they are also consulting with Nephrology.
We should know more tomorrow but they are trying to schedule the CT for next week.
We knew eventually the full scan would be coming but all of a sudden it’s here! It’s a little scary for sure! Now we are going to be doing this right before Riley’s 6th Birthday! The results Have To Be Positive .. As in No PTLD!
Last year Riley didn’t even realize it was his birthday and we swore if we pulled him through last year .. This year we would Celebrate! ♡♥

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Riley Has Breezed Through His One Year Cath/Bronch .. ♡

Riley is finishing up in the Cath lab. Spoke to Dr Goldfarb .. he says Riley’s lungs look Great! He does have some extra secretions but that would explain the wet cough. Hopefully samples that were taken will tell us what the wet cough is.
Just saw Dr Rome .. he too says Riley looks Great! His pressures were Good .. His coronary arteries looked Good. Before Dr Rome left I made sure to Thank him again! Thanked him for continuing to Cath Riley so aggressively for so many years. Had he not Riley wouldn’t have made it to Transplant!
Dr Rome kept Riley Alive till he could receive his Gift of Life .. ♡♥

One Year Ago .. ♥♡

One Year Ago .. about this time on March 4th 2013 .. We prepared to put Riley’s life literally in the hands of God and Dr Spray. I’ll never forget the walk to the OR. We walked past all the pods and through the CICU. It seemed as though everything had stopped. The reality was almost everything had. Everyone in the CICU stopped and watched as we ALL passed. Riley has spent his life frequenting the CICU and Everyone knew he was headed for his Heart/Lung Transplant. After waiting almost three and a half years Riley was about to receive his Gift of Life .. ♡♥

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One Year Ago .. ♡♥♡

One year ago .. right about this time .. We got a call from CHOP. This was our 4th call that they had an offer for Riley. After the 3rd Dry Run you begin to doubt that it will ever go through, but after a few hours we headed over the bridge to CHOP. This time we packed less in preparation to once again be sent home. However when we walked through the doors at CHOP on March 4th 2013 .. It would be different. It would be 127 days before we walked Riley back out those doors. Riley went to the OR at 11:15pm on March 4th and came out of the OR at 6:15am on March 5th with his Gift of Life .. a set of ‘Angel’ Heart and Lungs! Words could never express our Gratitude to the family who decided to donate their child’s organs. I still look forward to the day I can hand over a stethoscope and let Riley’s donors parents listen to their child’s heart beating Strong .. Living on through our Riley .. ♡♥

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