A Lil' Boy's Journey to Live….

Archive for the ‘CHOP’ Category

♥ Riley Will Have His 29th Cardiac Cath on Wednesday April 10th ♥

On Wednesday April 10th Riley will undergo his 29th Cardiac Cath .. The 3rd Cath since his Transplant on March 5th. Dr. Rome will Stent Riley’s left SVC and check the function of the left diaphragm and possibly biopsy. 
Riley has been on the vent again since Easter Sunday .. March 31st. Putting him more time on the vent since his Transplant then off. This leads to the discussion of a Tracheostomy. We will further that discussion after Riley’s Cath. As hard as the idea is to swallow .. We Know if it is needed it will benefit Riley in his rehabilitation. So we’ll see what happens after Wednesday.
One last note. Riley has formed another clot. This one is in his left leg. The clot is most likely the result of the PICC line. It’s being watched and treated with Heparin .. even though the clot formed while on a Heparin Infusion for the clots in his left arm. Everything is a balancing act.
Thank you All for your Support .. Prayers .. and Heart Felt Love for Riley and Our Family!
We Journey On .. ♥

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♡ Riley and Daddy Blowing Bubbles During OT on April 7th ♡

♥ Riley is 5 .. Alive and Battling On ..♥

5 years ago on April 4th we were sitting in the same place as we are now .. Children’s Hospital of Philadelphia .. ♥
There was no guarantee that Riley would be with us in a year and even less that he would be here in 5 years if he was still living with his own Heart and Lungs ♥
We find it almost symbolic that 5 years later We are Here .. Riley is Alive .. Having Received the Gift of Life ♥
It has not been a easy Journey but Riley has been a Warrior through every day .. through every battle he has faced ♥
As a Family .. We Journey On .. We look forward to Wishing Our Warrior a Lifetime of Healthy .. Happy Birthdays … ♥♥♥♥♥ ~ Mom
Thank you to Our team at CHOP for getting us to today! Dr. Spray for doing Riley’s first two open heart surgeries and for doing Riley’s Heart/Lung Transplant! Dr. Rome for Cathing Riley his first 26 times and soon his 29th! Dr. Hanna for being the Wonderful Person that he is .. for being on this Journey with us .. Being Our Grandmom .. holding our hand .. as he said he would the first day we met almost three and a half years ago! Dr. Goldfarb and Dr. Kreindler for guiding us through the world of Lung Transplant .. All of the staff in the CICU for caring for Riley the first five years and now preparing us for a New Future with Our Warrior! Thank You .. Thank You .. Thank You ♥

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Riley is Stable ..

Hello Riley Readers .. Nothing new to report. Riley is still stable and we couldn’t ask for more. Keep up the prayers!
Thanks Aunt Chris

♥Riley is Getting Transplanted♥

Sorry for not updating sooner .. We are in CHOP. Riley is in the OR preparing for his NEW Heart and Lungs! Everything is a GO ♥

♥ Riley Successfully Made It Through His 26th Cath ♥

Riley has Successfully made it through his 26th Cardiac Cath! Both of his remaining pulmonary veins were dilated with cutting balloons. After some hesitation Dr. Rome decided to also balloon his shunt. The shunt is so small at this point it’s hard to do anything to it, but he believes he was able to allow at least a little more blood flow through. The reality is though that Riley is Alive and has blood flow because of All of his collaterals. The collaterals are a Life Saver Now but will be a Major Issue during and after Transplant!
During Wednesday’s Cath they did something that they have Never done before. They Phlebotomized 180ml of blood volume and replaced it with 200ml of Albumin. Reason. His Hematocrit level is to high. It has been in the 70’s. So this was like thinning his blood out. It could cause some other issues down the line, but at this point the benefit outways the risk.
Riley is recovering in the CICU. So far .. No reaction to the contrast. Bizarre! He is being treated the same way yet had the reaction last Cath. We will take it though!
Thank you All for your Continued Love and Support for Riley and Our Family ♥

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♥ 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 ♥

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

♥ 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 ♥

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♥ Riley Had His 25th Cardiac Cath on December 3rd ♥

On December 3rd Riley had his 25th Cardiac Cath at Children’s Hospital of Philadelphia . The Cath itself was rather quick .. About a hour and a half. Dr. Rome Only Dilated Riley’s Left Lower Pulmonary Vein. The Right Upper Pulmonary Vein was Not Dilated, and for anyone who is New to Riley’s Journey .. They are the Only Two Pulmonary Veins Riley has remaining. There is Slightly more discussion about Riley’s Radiation exposure. It Always comes back to the Same thing, though, without being Cathed so Aggressively He Most Likely would Not Still be with us! Everything in Riley’s Life carries Risk! Half of the meds he’ll be on after Transplant could cause cancer! Right Now we really don’t have a choice but to continue doing what we’ve been doing since Riley’s Battle with Pulmonary Vein Stenosis Began. ♥ On another note regarding the cath. Again for Anyone who may be New to Riley’s Journey .. It is Believed that Riley has a contrast allergy. We premed the day before and then the treatment is carried over to CHOP. The last 3 Caths Riley has had very minimal reaction if any at all. This was after changing up the meds a little bit. Well after Monday’s Cath Riley’s reaction was Back! After Only about a hour I Looked at him and he was all red and blotchy! Fortunately this reaction doesn’t seem to put Riley into any kind of distress! I was concerned that it was back and a lot quicker than Ever before. Of course I had the docs come in and check him out. I asked if this was going to start affecting him beyond the skin reaction and slight fever at times and the answer was they don’t know. That is one of the reasons he is in CICU .. Because they don’t know how he is going to react or what complications could arise from the cath. It makes sense .. I guess I just wanted them to say that it wouldn’t get worse or cause other problems, but their Never going to say that. After having the reaction for several hours it literally worked its way down his body until it disappeared! It was kinda Crazy but it went Away! We may need to tinker with meds for the next Cath but we’ll cross that bridge when we get there. ♥ Thank You to Melissa, Riley’s Preschool Teacher, for coming for a visit! Riley was Sooo Happy and I Think a little Surprised to see Ms Melissa! I don’t think I’ve ever seen him so awake and interactive after a cath, but Riley Loves Ms Melissa ♥ I also finally got to meet Melanie , Team X-Love and Support for Xavier , Mom today! So Glad! I see a time coming in the near future where we’re going to be neighbors at CHOP. Although with a few other Heart Mommies ♥ Finally .. Woody Wolfe came for a visit. If you don’t know Woody .. He is Truly an Incredible Human Being! Woody sang the Toy Story song .. Which is the Only song Riley will let him sing 🙂 Then we had a Nice visit! Right now, Woody, has a Full beard. Why? For Weston ♥ Even had a Santa Shirt and Hat 🙂 Thank You to Everyone who is on this Journey with Riley and Our Family .. The Journey Continues … ♥

♥ Reality of Riley’s Life on the List ♥

Riley had a routine visit with Dr. Hanna on Monday. Although the visit was routine .. The conversation was not. Of course we discussed that Riley has now been waiting 3 years for his Heart/Lung Transplant! Incredible! We then talked about transplant a little bit. I mentioned about the collaterals being an issue during surgery and after. He agreed but said something we have yet to discuss. He said to be prepared for Riley to Need to go back into the OR Two to Three Times within the first Five days after transplant to address the bleeding! Ugh. Really wasn’t expecting to hear that. We were prepared for Riley to need to go into the cath lab but not having multiple .. Opening Him Back Up .. Surgeries! ♥
We talked some about Dr. Spray doing the Transplant. That will be the case whether he is on Call or not .. As long as he isn’t out of town. With the discussion of now having multiple surgeries I requested that Dr. Spray Obviously do those too. Dr. Hanna said he would. That whoever does the transplant also goes back in when necessary. For that reason, though, if Dr. Spray knows that he will be going out of town within like the next week .. He Will Not do the Transplant! I really didn’t like the thought of that, but I understand the logic behind it. The surgeon who does the Transplant knows what’s going on inside. Its Better to stick with one surgeon all the way through! Just Pray that surgeon is Dr. Spray ♥
So before ending our visit we talked about Riley’s next cath. It will be scheduled to be done within the next two weeks or so. Dr. Hanna showed some concern for the amount of radiation that Riley is being exposed to. He then kinda comforted himself in knowing that Dr. Rome now performs Riley’s caths rather quickly .. Keeping his exposure to a minimum. There still is real risk there but not doing Caths is not an option. It is Definitely agreed that Riley would not still be here if he wasn’t being cathed so aggressively. ♥
Dr. Hanna did briefly mention Riley’s shunt. He can’t believe that Riley even has blood flow. The shunt was put in at Four days old and should have been removed around Four to Six months of age. Riley is Four and a Half Years Old Now with the Same Shunt. It has been stented but that’s really all that can be done. Riley will not survive the surgery to change it and he won’t survive the Glenn Procedure. The shunt is something that could cause an emergent situation. Something we try not to think about but as time goes on it becomes more and more real. ♥
I Always want to be informed and prepared but the Reality of Riley’s Whole situation is Very Scary! To know Everything is Going to Change at Some Point for One Reason or Another! It Feels like We’ve been Sitting on a Bomb for Three Years and at Any Second it could go off .. It Will Go Off ♥ Thank You to Everyone who is on this Journey with Riley and Our Family! ONE day You will All see the Post that .. Everything Has Changed ♥

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♥ The Journey Continues ♥

Riley’s visit with Pulmonary was pretty uneventful on Friday. Which is Good! I did inquire if there has been any offers for Riley. Dr. Goldfarb says … Actually there was one this morning .. For Riley .. but it was just the Lungs. For anyone who doesn’t know when you do a Heart/Lung Transplant you transplant both lungs and the heart at one time. The whole thing is really Crazy but its our Only Hope ♥ Thank You to ALL of Riley’s New Followers for Joining Our Warrior’s Journey! Riley will be Waiting 3 Years for his Gift of Life November 2nd! If he is still waiting next month … Riley will have his 25th Cardiac Cath ♥ Sooo … This is Certainly a Journey we are on and we are Sooo Thankful for Everyone’s Love and Support for Riley and Our Family ♥ …

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Waiting to See Dr. Goldfarb ♥

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