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RIP Riley (1 Viewer)

Our cardiologist said there were five documented cases of IP with PH. I reached out to my IP support group on Facebook and told them this. The IP protocols mention nothing about PH being a possible effect nor testing for it. The president of the foundation, and an IP mom as well, who I have become very good friends with, reached out to the IP scientific biobank in Italy and one of the scientists there said that yes, PH with IP is common. So now the president is working on updating the IP protocols. All due to Riley.

 
Riley changing the world already. :thumbup:  

I woke up thinking about you guys and wishing for nothing but happy, healthy and positive results the rest of the way.

 
shadyridr said:
Our cardiologist said there were five documented cases of IP with PH. I reached out to my IP support group on Facebook and told them this. The IP protocols mention nothing about PH being a possible effect nor testing for it. The president of the foundation, and an IP mom as well, who I have become very good friends with, reached out to the IP scientific biobank in Italy and one of the scientists there said that yes, PH with IP is common. So now the president is working on updating the IP protocols. All due to Riley.
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Just for your record book.  We now require photos from her graduation at med school.  Please note the file accordingly.

 
Shady, I'm really sorry to hear about Riley's diagnosis of pulmonary hypertension, as I know it is a very serious condition.  My cousin was diagnosed with pulmonary hypertension over a decade ago, but I'm happy to report that he has lived a relatively healthy and normal life with treatment since his diagnosis.  He was an accomplished crosscountry and track runner in high school, graduated from college, and has been following his dream of working in the field of sports doing sales for the Dallas Cowboys.  It's my understanding that the treatment for PH has improved significantly over the past decade and that the overall prognosis for the disease has improved with some of the newer drugs.  I recommend looking into some of the PH support groups and conferences, as I know that they played an important role in my cousin's family's life after he was diagnosed with PH.  If you are interested, I could probably put you in contact with my aunt, who happens to be a nurse and could probably give you some good information and resources about caring for a child with PH.  As hard as getting a serious diagnosis like that can be, you have to try to take some solace in knowing that at least Riley will start getting the appropriate treatment for her condition. Good luck with everything and try to stay positive.  

 
Buckfast 1 said:
Shady, I'm really sorry to hear about Riley's diagnosis of pulmonary hypertension, as I know it is a very serious condition.  My cousin was diagnosed with pulmonary hypertension over a decade ago, but I'm happy to report that he has lived a relatively healthy and normal life with treatment since his diagnosis.  He was an accomplished crosscountry and track runner in high school, graduated from college, and has been following his dream of working in the field of sports doing sales for the Dallas Cowboys.  It's my understanding that the treatment for PH has improved significantly over the past decade and that the overall prognosis for the disease has improved with some of the newer drugs.  I recommend looking into some of the PH support groups and conferences, as I know that they played an important role in my cousin's family's life after he was diagnosed with PH.  If you are interested, I could probably put you in contact with my aunt, who happens to be a nurse and could probably give you some good information and resources about caring for a child with PH.  As hard as getting a serious diagnosis like that can be, you have to try to take some solace in knowing that at least Riley will start getting the appropriate treatment for her condition. Good luck with everything and try to stay positive.  
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Yes definitely interested and good to hear. I'm sure every case is different so let's hold off until after procedure to see the treatment plan and prognosis.

 
Good luck to Riley and your family through this difficult time.  

I noticed you posting about gaining weight and thinking about a suicide letter in the other thread.  It is absolutely critical that you still take care of yourself mentally and physically.  She is in good hands with the doctors and medical staff - they care about her well being as much as you do.  Please make sure you make it a priority to take care of yourself as well.

 
They had to cut the procedure short because her oxygen numbers were dropping too low and they didn't get all the numbers. They said she has severe pressure (PVR of 30 where normal number is 2). So much so that they probably have to apply the most aggressive treatment on her. That means a permanent iv with a pump delivering medicine 24/7 and oxygen. Too soon to know what this means in terms of prognosis. They don't do the iv procedure here so she may need to be transferred to Columbia in a few days.
 

 
shadyridr said:
They had to cut the procedure short because her oxygen numbers were dropping too low and they didn't get all the numbers. They said she has severe pressure (PVR of 30 where normal number is 2). So much so that they probably have to apply the most aggressive treatment on her. That means a permanent iv with a pump delivering medicine 24/7 and oxygen. Too soon to know what this means in terms of prognosis. They don't do the iv procedure here so she may need to be transferred to Columbia in a few days.
 
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Man, I hope things work out. Any idea how long she has to be on an IV?

 
Things are gonna get better!  They an perform miracles these days and Riley is a fighter.  I am pulling so hard for you guys.  As Donkey said, please take care of yourself and your older boy as well. Go to a ball game or to an amusement park.  You have to stay healthy and strong for your family, Shady!

 
She's in bad shape now. The doctor said the numbers are among the worst she's ever seen but she is optimistic. now she's on breathing tube and medically induced coma. If she survives next three days, she will be in hospital until September. More time in hospital. Her services were supposed to start today. Justin will be without his sister for another stretch of time. That breaks my heart the most. We are staying at Ronald McDonald house Next to hospital but I don't know what I'm going to do about work. I already took a bunch of time off. Nj offers paid family leave so I might take that.

 
I can't imagine what you are going through.  All I can do is sigh and put my head down.

 My thoughts and prayers are with you and that little girl. You. Don't. Give. Up. Ever. 

 
Thinking of her during my waking hours. Hang on to the doc remaining optimistic. There are many cases of should haves that turned out with good endings in the medical world. Praying Riley will be part of those #s.  #teamriley xx

 
This is hard to read, just sitting behind my computer.  This has been quite a roller-coaster ride for you and your family and I'm not sure many of us could handle this as well as you have Shady.  You should be very proud of what you've already made it through, and your family is very lucky to have you as their Dad and Husband, don't ever forget that.  GL man.

 
Thoughts and prayers to Riley and your family.  As others have said, modern medicine often works miracles, keep hoping and praying.

If the FFA can do anything, let us know.

 
shadyridr said:
She's in bad shape now. The doctor said the numbers are among the worst she's ever seen but she is optimistic. now she's on breathing tube and medically induced coma. If she survives next three days, she will be in hospital until September. More time in hospital. Her services were supposed to start today. Justin will be without his sister for another stretch of time. That breaks my heart the most. We are staying at Ronald McDonald house Next to hospital but I don't know what I'm going to do about work. I already took a bunch of time off. Nj offers paid family leave so I might take that.
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TPW for Riley and the rest of your family...try and stay strong Shady, we're here you for you. Vent here or wherever you can, use the FFA as your sounding board or whatever you need.

 
Every thought and prayer coming your way from Colorado.  C'mon Riley! You've got this, sweetheart. 

 
Man shady my heart, and my wife's, hurt for you guys.  Truly hard to read and even harder to fathom how hard these past months have been for you and your family.  Like Koya,  I'm not far away man.  Please let me know if you need anything.  Seriously anything...just PM me.  Stay strong for your family and most importantly Riley. 

 
Damn bro.   Seems like you and your family can't catch a break.  With that being said--that just means we have to pray and hope harder.   I really mean this--but what you and Riley have gone through is absolutely insane.  You and Riley have both shown more courage in the past few months than I have in my entire lifetime.   I truly will continue to send as many positive vibes as I can your way.  

 
Continued prayers for Team Riley.

Hang in there man. To the breaking down now with the second issue (saw your other post), to staying at the RM House,   that's what we went through also.

Praying several times a day so that Riley can continue to have a  lifetime of positive influence on everyone she touches. When we hit that second issue also, this is what my pastor had me focus on because I hit total rock bottom.

My son just started his junior year at Boise State today.  Team Riley will heal.

 
shadyridr said:
She's in bad shape now. The doctor said the numbers are among the worst she's ever seen but she is optimistic. now she's on breathing tube and medically induced coma. If she survives next three days, she will be in hospital until September. More time in hospital. Her services were supposed to start today. Justin will be without his sister for another stretch of time. That breaks my heart the most. We are staying at Ronald McDonald house Next to hospital but I don't know what I'm going to do about work. I already took a bunch of time off. Nj offers paid family leave so I might take that.
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Workforce management guy here.  Not only should you take the time, but filing for family leave will actually provide protection for you against your employer in the event they become heartless sob's.  Thoughts are with you and Riley tonight...

 
They called us to rush over last night at 930pm because she was in really bad shape just in case she didn't make it. We got there and there were 10 people in her room trying to save her life. Her face was blue. Worst night ever. Somehow they stabilized her and my warrior survived the night and her color came back. At 2am we came back to get some sleep and they said they would call and they didn't. Heading over there now to see our warrior. I thought we lost her and already contemplated life without her. She has to get better. I can't go through that again.

 
So glad she made it through last night shady -- such an impossible situation you all are working through, we're all here sending all the positive vibes we can muster.  Praying for your little girl.

 
shadyridr said:
They called us to rush over last night at 930pm because she was in really bad shape just in case she didn't make it. We got there and there were 10 people in her room trying to save her life. Her face was blue. Worst night ever. Somehow they stabilized her and my warrior survived the night and her color came back. At 2am we came back to get some sleep and they said they would call and they didn't. Heading over there now to see our warrior. I thought we lost her and already contemplated life without her. She has to get better. I can't go through that again.
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One day and one night at a time, shady.  Hang in there we're all pulling for your little warrior princess.

 
Love all you guys shady, praying and pulling for you. 

One breath and one moment at a time. Warrior is a very apt term for your little girl and I have to think that's genetic so you too hold tough and be strong in an impossible time.  

 
I feel way behind on this thread because I've been busy at work.  I just caught up...and realized how little being "busy at work" matters in the grand scheme of things.  I'll echo what @lakerstan said above - Take the time off.  Family >>>>>>>> Work. 

Thoughts and prayers. 

 
Praying for you and your family Shady. I can't imagine the pain and hurt you all are going through. It breaks my heart to read these updates. Hug your kids folks. 

 
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