Another Facebook PHriend gone! And 2 little girls fighting for their lives. They need your prayers and they need a cure.
Patricia McFarland-Myers
I don't mean to go all PH on you today. But we've just lost another beautiful phriend to this monster. RIP Lori Rodriguez. Lord we need a cure!
Lori Sobrowski Rodriguez - beautiful, happy, young woman passed away yesterday from PH-related heart failure. This photo is stunning in that it was taken Christmas Day, 2014.
Right - the last photo that she posted. How poignant an you get?
Breathe For Riley
Yesterday at 13:57 ·
Had to call Dr Hanna today. Always glad when he is the one that answers the pulmonary hypertension emergency cell phone for CHOP families.
Riley looked funny (extremely pale, dark nails) this morning so I put her monitor on and her oxygen level was only 65% on 4 liters. He told me to give her extra lasix and keep him posted.
I ran out and bought a scale and she put on over a pound since coming home (all fluid). She then got her dose of steroids and came up to about 80% on 5 liters.
She hasn't really left the couch since coming home. Most of her toys haven't even been taken out of boxes because she hasn't had much interest in anything but laying down.
We have tickets tomorrow for Disney on Ice, and I'm hoping we can have her stable enough to go because she is really looking forward to it.
Riley Buchanan is 6 years old and awaiting a lung transplant at Children's Hospital of Philadelphia
http://www.gofundme.com/rileysnewlungs
Hope PHor Aubrie Starr
Sunday morning Prayers for Aubrey please.
Aubrie still has a fever, no word on her test. She still will not eat and sleeping a lot :-(
Hope PHor Aubrie Starr
Yesterday at 04:47 ·
Aubrie is back in the hospital again. Fever was up to 103.5 last night so we brought her to the ER. Aubrie has an infection in her lungs, they are testing to find out why. It could possibly be the Flu, if that comes back negative then it's on to the next test. We are also waiting on blood cultures taken last night. Fever was down last night but back up this morning.
Hope PHor Aubrie Starr
18 December at 20:10 · Edited ·
Today I received a call, Aubrie's case was denied by the specialty center at Chapel Hill. Now I will begin working with her team to find her a good out of state lung transplant specialty center.
Then we will have to send them her case and pray we find someone experienced enough to agree to guide us in her care.
We will begin trying to setup fund raisers to help pay for traveling and extended stay expenses soon. Once we are with a specialty center and she is listed for transplant it is possible we may have to completely relocate until she has her transplant and completes all recovery. Please continue to keep us in your prayers!
Hope PHor Aubrie Starr
2 December at 20:01 ·
Update: Aubrie's breathing has been so much better!!! She is playing again and happy as ever. So glad that tomorrow on my day off I will be able to spend some time with her having fun and not at any appts or with her feeling bad, tomorrow's mommy and me time is going to be great!!
Patricia McFarland-Myers
I don't mean to go all PH on you today. But we've just lost another beautiful phriend to this monster. RIP Lori Rodriguez. Lord we need a cure!
Right - the last photo that she posted. How poignant an you get?
Breathe For Riley
Yesterday at 13:57 ·
Had to call Dr Hanna today. Always glad when he is the one that answers the pulmonary hypertension emergency cell phone for CHOP families.Riley looked funny (extremely pale, dark nails) this morning so I put her monitor on and her oxygen level was only 65% on 4 liters. He told me to give her extra lasix and keep him posted.
I ran out and bought a scale and she put on over a pound since coming home (all fluid). She then got her dose of steroids and came up to about 80% on 5 liters.
She hasn't really left the couch since coming home. Most of her toys haven't even been taken out of boxes because she hasn't had much interest in anything but laying down.
We have tickets tomorrow for Disney on Ice, and I'm hoping we can have her stable enough to go because she is really looking forward to it.
Riley Buchanan is 6 years old and awaiting a lung transplant at Children's Hospital of Philadelphia
http://www.gofundme.com/rileysnewlungs
Hope PHor Aubrie Starr
Sunday morning Prayers for Aubrey please.
Aubrie still has a fever, no word on her test. She still will not eat and sleeping a lot :-(
Hope PHor Aubrie Starr
Yesterday at 04:47 ·
Aubrie is back in the hospital again. Fever was up to 103.5 last night so we brought her to the ER. Aubrie has an infection in her lungs, they are testing to find out why. It could possibly be the Flu, if that comes back negative then it's on to the next test. We are also waiting on blood cultures taken last night. Fever was down last night but back up this morning.
Hope PHor Aubrie Starr
18 December at 20:10 · Edited ·
Today I received a call, Aubrie's case was denied by the specialty center at Chapel Hill. Now I will begin working with her team to find her a good out of state lung transplant specialty center.
Then we will have to send them her case and pray we find someone experienced enough to agree to guide us in her care.
We will begin trying to setup fund raisers to help pay for traveling and extended stay expenses soon. Once we are with a specialty center and she is listed for transplant it is possible we may have to completely relocate until she has her transplant and completes all recovery. Please continue to keep us in your prayers!
Hope PHor Aubrie Starr
2 December at 20:01 ·
Update: Aubrie's breathing has been so much better!!! She is playing again and happy as ever. So glad that tomorrow on my day off I will be able to spend some time with her having fun and not at any appts or with her feeling bad, tomorrow's mommy and me time is going to be great!!
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