Riley and Brett Celeck (Eagles) at the Voice at CHOP :)

Last Minute Visit to CHOP with Daddy..

Riley took a visit to CHOP today with Daddy. I was at Eye Doctor appts with Christian.
The reason…. Yesterday… Early morning Riley was throwing up alot. Then it kinda stopped after the morning. He did have 2 loose stools but nothing to crazy. He was by no means feeling well yesterday though. All of his numbers were ok so we split some feeds with pedialyte and stayed in contact with CHOP.

This morning he started with the diarrhea. He had 5 pretty good BMs before noon. Still in contact with transplant they said to continue the pedialyte and feeds as we had been. Thats when I took Christian out and CHOP called back. Seems they thought it may be a Good idea to look at Riley and run some labs. That is how Dad ended up taking Riley to CHOP… ALone. This way we could skip the ER but the clinic was going to be closing so they had to hurry.

Riley’s labs all came back ok. Ok for Riley anyway:) So they told us to continue doing what we have been. Some may feel that it was a big waste of time to take Riley over there when we are just going to continue doing the same and in the Big picture he is ok, but with Riley you Just never know. There is a fine line between to much fluid in his body and not enough. I Feel better knowing he was seen by a doctor and that his labs are ok.

Hopefully by tomorrow this bug will Clear for Riley and he can head into the New Year on a Healthier Note… Of Course Transplant Would Be the Best Way To Start The Year ♥

Christmas Miracle…..

I Can Honestly Say I Am Not Hoping for a Christmas Miracle for Riley. That Miracle Would Require Another Family to Lose Their Child On Christmas and I Wish That for No One ♥ Riley Will Get His Miracle….We Just Don’t Need It Today ♥

Heroes Walk Through Our Life Everyday….Including Today…

I had a visitor at Our door today. He said he was Dropping Something Off. When I opened the door there was a gentleman who handed me a card. He said his family was touched by Riley’s Story and that the card was for Us. Then he quickly explained that he was in Real Estate and that was how he found the house. I Honestly was a lil confused and Thanked Him and went Inside.
Once inside I opened the card and it contained Two Gift Cards to Walmart and a Nice Note! Seems as though another local newspaper shared the story that the Courier had posted the other week. That was the story he saw. Seems they also have a Special Needs Child and spend alot of time at CHOP.
I wish now that I could go back to when I opened my front door and do it over. Open the card then so that I could Thank Mr Rivera in Person for his Families Extremely Kind Gesture!
If Anyone in the Rivera Family is Reading this Now….. Thank You… Thank You… Thank You ♥ Merry Christmas to You and Your Family…. Your Kindness has Certainly Touched Our Family This Holiday Season ♥

The Journey Continues….

As you may have seen on Facebook Riley had appts at CHOP this week.
Yesterday we saw Dr. Hanna. Nothing much to report. Pulse Ox was hanging between 70-73 on 3L. Riley weighed in at 26lbs. That number hasnt really changed.
It does look like Riley will be getting Synagis again this year. Hanna doesnt believe he really needs it plus he knows how horrible it is because of how big Riley is when it comes to getting Synagis. The bigger you are the more you need. Last year…. Every Month through the season… 2 Shots… 1 in Each Leg… Both I’d say with about 3cc in them. Then you have to do both at the same time… Get it over with! Easier then one leg at a time. Anyway… Dr. Goldfarb and Dr. Hummel believe Riley should get Synagis. That being said…. Synagis… Here we come.. Grrr.. Riley will also be Cathed AGAIN around the second week of January.
Riley’s cath lead us to the Allergy doctor today. I dont have the paperwork on hand but to try and sum it up…. We will continue pretreating Riley with Tylenol, Steroids and Benadryl. The only real change to trying to prevent Riley’s reaction to what is believed to be contrast is Maximizing his premeds and continuing the meds for possibly up to 48 hours post cath. The thought is that Riley will still have a reaction after the cath… red, fever, blotchy… but hopfully it can be minimized. The reaction isnt Believed to be Life Threating However if we Stop doing the Caths because of this issue… That would be Life Threating.
In the End… The Journey Continues……. ♥

Riley’s Amazing Facebook Followers…..

Just an Update on Riley’s Wonderful Facebook Followers!
Love You All… Thank You!

2,251 United States 43 Canada 37 United Kingdom 18 Australia 15 Ireland 12 Greece 7 Germany 4 Spain 2 Argentina 2 Mexico 2 Austria 2 Indonesia 2 Colombia 2 Palestine 2 New Zealand 2 Vietnam 2 Malaysia 2 South Africa 1 Bulgaria…. I Believe It Left Out France Again:)

Riley Playing Trains With Pop-Pop… :)

Riley Seems Ok Today….

Riley did not go to CHOP today. His PO was in the 80’s all night. The reality is I don’t constantly check his PO anymore. That being said… Riley does desat during the day cause he is up and active. Yes its going lower but we have to remember that Riley has been waiting over 2yrs for a New Heart and Lungs ♥ Thank you all for Your Love and Concern ♥

Riley’s Pulse Ox has gone to the 60’s on 4L…

Riley’s Pulse Ox today on 3L is in the 50′ s. Put O2 on 4L and his Pulse Ox got up to upper 60′ s. Dr. Hanna is not happy with the numbers but believes we can wait and come and see him tomorrow in clinic instead of going to the ER tonight. Dr. Spray said things would probably begin to become Bigger issues around 3 1/2. Yea…Riley is 3 1/2 ♥ Hopefully tomorrow doesn’t lead to admission. Technically Riley should have been inpatient the last 2yrs…Can you imagine?! God..Just let us come Home tomorrow ♥