A Lil' Boy's Journey to Live….

Archive for January, 2013

♥ Riley’s Cath has been Canceled ♥

CHOP will call to reschedule Riley’s Cath♥

♡ Riley’s 26th Cardiac Cath is Upon Us ♡

Riley Will be recovering from his cath in the PICU tomorrow instead of the CICU! I am not very happy about it but the alternative is to reschedule … Thats not a good alternative to any of us. So the final ok had to come from me and I gave it! I made clear that I know of miscommunications happening in the past between the 2 floors/units and that because of that I may seem extra naggy but I need to know that this team is caring for our very complex Riley accordingly! Im sure all will be ok and since he’ll be on a different floor than cardiac … Dr. Hanna will be like his attending. Just keep Riley in your thoughts …. first MRI of his brain then Cath then recovery in the PICU! ♥

♥ Many Members of Riley’s Medical Team ♥

♡ Some of the Many Members of Riley’s Medical Team .. Including the Doctor Who Delivered Him ♡

♥ Children’s Hospital of Philadelphia ♥


♡ Dr. Hanna .. Dr. Goldfarb .. Mike Donahue .. Dr. Spray .. Dr. Rossano .. Dr. Rome .. Dr. Bebbington .. Dr. Kreindler .. Dr. Stevens ♡

♡ Riley’s Cath (#26) and MRI Are Scheduled For Next Week ♡

Quick Update ~ Riley’s next Cath (#26) has been scheduled for next week.
They have also already scheduled the MRI for right before the cath. Dr. Licht will come to the CICU post Cath to discuss the results from the MRI.
We do have to tinker with the premeds for Riley’s contrast allergy because last Cath he had a full blown reaction and within a hour of being in the CICU. This has been under control for the three caths prior. Luckily the reaction doesn’t cause him any distress but we just never know what could happen! As the doctors in the CICU say .. That’s why he is Here!
We Pray .. Smooth Sailing for Riley as he Journeys On ♥

♡ Defying the Odds ♡

♥ Gift of Life ♥

I know of two children receiving the Gift of Life tonight ♥ A Lil Lady receiving her New Lungs and a Young Boy receiving his New Heart ♥ So Happy for these Families and Their Warriors ♥ 

Can’t help but be mind boggled though … How has Riley been waiting Over Three Years for his Gift of Life? I know how hard it is to get both heart and lungs that are in perfect condition for a child … It’s just Crazy how long Riley has been waiting ♥

The Positive to Riley still waiting is that he is Here .. Alive .. Home ♥ Post Pediatric heart/lung Transplant outcomes are much different than heart. The last two children that received heart/lung transplants and were around Riley’s age .. passed within the first year ♥ Even the doctors have said that Riley waiting so long has given him a chance to live! Had he been transplant two .. three years ago he may not be here now … losing the time that he has Lived! The goal with Riley’s Transplant is to get him through the first year .. That’s the hardest to overcome than go from there ♥

May God watch over All of Us … Parents … Families living a life where Our child is born sick .. Fighting to Live since the day their life began … There is No Understanding to it .. We just have to Accept it and Live it .. Not for Us .. For them .. Our Warriors ♥

♥ Riley’s Appointment With Neurology ♥

We returned from Neurology with not to many answers. We do know from testing that Riley has two areas in his brain that may make him more prone to seizures. Areas that will be further looked at on MRI during Riley next Cath. Its hard to say much more without the MRI. If Riley was a Normal … Healthy … Child the DX would most likely be migraines, however, we all know that Riley is anything but normal. These areas could be caused by injury such as lack of O2 … Something you wouldn’t worry about with a Healthy child but we already know that Riley Sats in the low 70’s on 4L of O2 so it could very possibly be do to that. I would rather wait to comment further until the MRI.
After also seeing Dr. Hanna … It appears that Riley’s next cath (#26) will be in the next two weeks, however, right now Every bed on the 6th floor at CHOP is occupied. If the cath isnt scheduled for two weeks we will instead see Dr. Hanna and he will decide if Riley MUST be cathed then and if so he will do some rearranging! Another wait and see … I think that may be the name of Riley’s Journey … Wait and See ♥

                       Riley and Dr. Licht ♥


♥ Riley Has An Appointment With Neurology ♥

Brief Update ~ On Friday Riley will be seeing Dr. Licht in Neurology at Children’s Hospital of Philadelphia. The reason being that there has been multiply times now that Riley will almost Spontaneously put his palm of his hand to his forehead … Start Crying that he has a Boo-Boo and then starts throwing up .. A Lot … Then he falls asleep for several hours following! Once he wakes up he is seemingly ok. 
The teams have discussed it and think the best thing to do is see Neurology. Riley is already scheduled to see Dr. Hanna on Monday but he doesn’t want to wait till Monday for Riley to see Dr. Licht. 
Trying not to let the mind wonder! Riley really has been Sooo lucky (I know that sounds Crazy) thus far …. I dont want that to change! He has already lived longer than they thought … lived longer on the wait list than they expected … Come through 25 Cardiac Caths unbelievably well … etc. etc. ♥
Riley Really is the Little Engine that Could …. He just needs to keep chugging along ♥ ♥

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