A Lil' Boy's Journey to Live….

Archive for September, 2013

Update From Cardiology .. ♥

Rather then rewriting what was emailed today from Cardiology .. I’m going to just copy and paste some of it for an update .. Thank You Karen … 

Hi Carol.

I just wanted to catch you up on a few things-Riley’s biopsy was negative for rejection, as you know, which is perfect.
Yesterday, I got back his antibody report, which shows us that Riley is NOT producing any antibodies against his heart or lungs. This is HUGE! We didn’t “expect” him to make antibodies against his heart/lungs, but there is always the chance that he could, so we check that regularly, at least with every cath/bronch. Having NO antibodies against his heart makes his risk of coronary disease a lot lower, so this is very good news. 
For his next cath, we would only plan to do another one at one year, unless there are any concerns. Of course, if Riley is getting a bronch sooner than that, we could consider doing a cath a little earlier. 
Last thing- this reaction to whatever he is reacting to!!!! We don’t know what to do about this- it’s clearly not a “contrast” thing, because he didn’t get any contrast with this last cath. Dr. Jobes doesn’t think it’s an anesthetic medication either. I am going to contact immunology again, and ask their input. They may want to see him, but I’ll let you know. The question will come up again, should we “pre medicate” him at his next procedure. I don’t know the answer to that, because even despite premedicating him in the past, he still always had the reaction, so you could argue that the premed didn’t help at all, and maybe what he needs is more “post” meds… Hopefully immunology will have an answer for us.

~ Karen

♡♥ Mom

Still Heading in the Right Direction .. ♡

I have yet to speak to Cardiology however I am in constant contact with Pulmonary. In speaking with Pulmonary we’ve learned that Riley’s Heart Biopsy was also NEGATIVE for Rejection! Yay! The NP in pulmonary said she would let heart transplant discuss the pathology reports though. Of course my immediate thought is .. If everything is Ok why can’t she just tell me that? Then I have to just Pray that if something did come back .. They would have called me by now! Right?! NP just said it wasn’t her place to go over the pathology reports from the heart. Ok. I get it but again .. Everything should be ok or they would have contacted me already! So we’re going to say .. All is Ok .. Because Cardiology hasn’t contacted to say otherwise.
As far as the yeast … We are actually still waiting for those results. All of the other panels have seemingly come back Ok.
On a final note .. Since Riley’s donor lungs and heart were once again negative for rejection .. We can decrease his steroid dose! That’s another Yay! For every negative biopsy we will decrease his steroids!
Love and Hugs For being a part of this Journey with Riley and Our Family .. ♡♥

(We learned last week that Riley’s lung biopsies were negative .. However that update was only posted to FB.)


                   Riley and Daddy ..

Riley May Have Hit A Bump In The Road .. ♥

Upon discharge on Tuesday Dr Kreindler came to see us. This was in the early evening so the visit brought a little bit of anxiety with it. 
Some of Riley’s Very Preliminary results have come back. One was showing a form of yeast in a sample from his lungs. Dr Kreindler’s first thought is to treat but the team wants to wait for more concrete information. There is a chance that it traveled from his mouth when they were doing the Bronchoscopy. That would be the best conclusion. It could also actually be yeast in his lung! If it is Dr Kreindler’s thought is that we caught it very early because Riley isn’t really symptomatic.The plan of care is where things could become tricky. Because of the medication used to treat the yeast we would first have to pretty much cut Riley’s Tacrolimus dosage in half. (Immune Suppression Med) This med also tends to raise Creatinine levels. These are things that could ultimately put Riley into Renal Failure for a third time. Riley’s kidneys can’t handle another round of failure! This being a good reason to wait for more information. The hope is Wednesday or Thursday to know more. If it is really yeast in his lungs he will be admitted to CHOP for what should be about a week. During this time being closely monitored including daily blood draws to stay on top of his kidney function. For now we wait for results! Not only negative biopsy results but that this preliminary finding of yeast isn’t really growing in his lungs ..
Thank You All for your kind words on Facebook .. Twitter etc Today and Always .. ♡♥

Updates from Riley’s Procedures .. ♡

Riley’s updates from Bronch/Cath/ENT ..

Just spoke to Dr Javia. He is thrilled with how Great Riley’s airway looks! He is going to downsize his trach and cap it. This is obviously Wonderful news however he won’t be Decannulated right now. Dr Javia wants to see Riley in his Airway clinic October 14th. He expects that things will look just as great in a month. At that time he will schedule him to come back and stay in the PICU for Decannulation. So even though we can’t Decannulate today .. We should able to Decannulate in October. Now Pulmonary is with him and when their done Cardiology will go in .. ♡♥


Spoke to Dr Kreindler. He says Riley’s lungs look good. He was able to get good biopsies which will take a few days for results. His lower lobes are clearer then previous bronches. He is pleased with how Riley is doing. He says he is continuing to Beat the Odds! Dr Dori is with Riley now doing the cath.Still waiting to see if we will be able to go home today. ♡♥


Riley is back in the CPRU. Since they went through the neck its a two hour flat time. His trach will be downsized and capped and we will be going Home! ♡♥

☆ Amazing How Far Riley Has Come ☆

I came across this blog on my phone as I was cleaning out my notes .. Thought I would share ..
It’s from 3 Days Post Riley’s Heart/Lung Transplant ..
Riley was Very sick at the time but we did not know yet that he had Paraflu .. ♡♥
~ ~ ~

March 8 2013 ~ My thoughts ..

I knew that these days would be the hardest .. Just don’t realize how hard until your actually living them.Watching Riley as he is starting to slowing be aware is heart breaking. He already doesn’t look like my baby. There is No gradual waking. Everytime he is touched in the slightest he peaks through his swollen eyes and shakes his head rapidly .. trying to mouth .. No .. No .. No while flinching his whole body and tears rolling down his cheeks. Usually followed with some more sedation drugs. To see your baby with a head that seems doubled in size with a breathing tube coming out of one Nostril and a tube from his stomach out another .. along with tape to keep it all in place that is covered in blood is beyond words. That doesn’t even scratch the surface with what’s going on below. Five IVs including the feet .. Artiral line .. chest tubes .. pacer wires and more. Riley has always been a Warrior coming through everything like a champ. He is still fighting like a Warrior but to see the sadness and fear that my baby is experiencing has my eyes filled and my heart breaking. ♥

~ ~

Living in the moments above .. I never imagined Riley being where he is today! He truly is Defying the Odds Everyday .. ♡♥ 


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