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RIP Riley (2 Viewers)

It is a common that some babies have lower o2 levels when they feed, and if they have reflux.  Hopefully the doctors can pinpoint the cause soon.

 
shadyridr said:
We thought it was reflux but now I think it's some form of dysphagia (difficulty swallowing) due to weakness from the stroke. The weird thing was it happened for 2 weeks straight. Stopped for a week and I thought we were past it and then came back again for a week. Now it hasn't happened again a few days. It only happens while she is eating, never after.
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Do you feed Riley a full bottle or let her take little breaks?

 
Koya said:
Out in Nassau County? It's like 15-20 min from me. 

SERIOUSLY, as in the wife's visiting friends and I literally have nothing planned this weekend - if you need anything, let me know.  Like, I know a Shake Shack down the block or whatever you need, would be happy to make a delivery.  Hit me up in PM, or on Facebook, whichever. 
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I'll be there most of the weekend

 
We got answers and unfortunately Riley was diagnosed with another rare condition completely unrelated to IP... Pulmonary hypertension. It's chronic but treatable hopefully with medication. She'll be here until at least Monday to see if the medicine is working. Unfortunately were gonna have to push back her services a week probably.

 
gee whiz man you are having a hell of a run shady i dont know what to say and doubt others will but listen up i bet that i am like most here who when you post and its another body blow it gets up in our throats and all bs sctick aside there is no one on this board that i root for more than riley and your family and that is undoubtedly board wide and nationwide if you ever feel low know that so damn many people out there are rooting behind you that it would make your head spin stay strong for your girl and your family there is a special place for guys like you 

 
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####, man. More thoughts and prayers your way. Unimaginable what you and your family have been going through.

 
C'mon Riley, be strong, baby.  We're all pulling for you! You got this Shady!  Sending positive vibes and best thoughts to the entire Shady family.

 
shadyridr said:
Reading about pulmonary hypertension scares the life out of me. It does not have a good prognosis.
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Hey shady the one thing I'd caution is reading about this stuff on the internet. Listen to what the doctors have to say.  I know that's hard to do but alot of times what you find on the internet isnt always accurate or directly related to your situation.  Keep the faith that it's treatable and hopefully the medication works. 

 
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Thinking about you, little Riley. Lots of good thoughts and positive vibes coming your way. We know you're a fighter and you've got this.

 
Riley will come out of this stronger than ever. Keep staying strong for your family. You're doing an amazing job. Prayers for your family. 

 
Agree with staying off the internet when searching for medical stats. There are so many variables that stats don't/can't capture. Riley is a fighter and has defied some odds. She's not going to quit on us now. Sending prayers for strength for all of you. X

 
shadyridr said:
Shout out to @Koya for delivering shake shack to us. Great guy and a wonderful act of kindness because the hospital food here sucks.
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Was MORE than happy to oblige! That's what this community is about.  And do eat that chicken sammich, I think it's the best thing they got.

Appreciate the opportunity to say hello to our lil Riley in person - she looked great, and hungry too! Chowing on that milk.  Go Riley!  

GL with the tests monday and hope you are able to get back home soon.  If not, we'll have to do another Shake Shack run, and this time I'll make sure to be hungry enough to join you. 

 
shadyridr said:
When you see the doctor wiping away tears in the hallway you know things are not good
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Wow bro. Continued thoughts and prayers. When times get tough- all you can do is stay positive, do everything that you can, and show courage and strength. It's pretty obvious that Riley, you, the rest of your family are all doing these things. If anybody can get through this- its you guys. 

 
Hang in there Shady. I wish there was more any of us could do but all we can do is offer up our thoughts and prayers. And be here foryou when you need to talk or vent or share.

 
Stay positive. Tears may not necessarily mean terrible news, could very well mean he/she is very touched by your little angel as we all have been. Continued prayers. As mentioned, wish there was something more we could do. Big ups to Koya for hooking you up with food and being with you on behalf of #teamriley FBG. X

 
CurlyNight said:
Stay positive. Tears may not necessarily mean terrible news, could very well mean he/she is very touched by your little angel as we all have been. Continued prayers. As mentioned, wish there was something more we could do. Big ups to Koya for hooking you up with food and being with you on behalf of #teamriley FBG. X
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:goodposting:

wish things were easier this month, shady- for you and the team.

all the T&Ps

eat: if your travels take you through the EVil, I'd love to hook you up with some Katz's.

 
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So just to update everyone, her o2 was good all day yesterday with just light oxygen therapy but starting last night she had a few episodes dipping into the 80s always coinciding with her being awake. It happened again today even into the 70s so the cardiologist started her on nitrous oxide. She wanted to hold off on that because the test tomorrow they wanted to give her NO to see how the pressure drops. That gives them a plan how to medicate. So far she's been 100 on the NO. They did another echocardiogram and unfortunately there wasn't much change after oxygen and blood pressure medicine. They were hoping for an improvement. The test tomorrow will give the most answers in terms of treatment options and prognosis.

 
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Thanks for the update GB.  Wish we could do more, and she'll get a good focus of energy from everyone here on this board.  Our fingers crossed for tomorrow's tests.  

 
Big day - we are sending our collective positive energies. Knowing how much a fighter our lil Riley is, she will fight through whatever hurdles are put before her. 

Here's to hoping for the best for Riley, you and your wife. 

 
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