The Power of Hope
In support of
Sadie Long
View Support Registry
Sadie Long
I will start with: Sadie's biopsy came back negative- she is NOT IN REJECTION! Thank you God. All of her numbers from yesterdays testing came back good, the status of her heart is good. It's healthy.
It is completely healthy. Read it again, say it out loud, shout it like I did. Celebrate.
Sadie's heart maintained it's numbers last night, it did dip slightly lower than a normal rate last night but it stayed above the bench mark the doctors have set for it. She's also maintained a higher rate today as well. I think we are all cautiously optimistic. The fact that her heart function and numbers and testing has all come back good, and the fact that she's starting to improve with her rate points to the likelihood that her body is slowly shedding the pre transplant meds and as it does so her heart can function as 'normal'. I do say cautiously optimistic because this is only one day and we have to see improvement across many before that can be believed. The EP cardiologist said "we're not out of the woods of needing a pace maker but everything does look good". So it has to continue to look good before the pace maker plan can be pushed aside. For now everyone is ready to go in case she does regress and ends up needing to have one implanted- but the hope is that it's just an emergency plan and we wait and watch her improve.
Her transplant cardiologist said today "We're okay with her having a pace maker but that's a life long change- we don't want to make life long decisions when she's very stable and we can wait and monitor- lets spend an extra month watching if it means avoiding having another invasive procedure and not having to make that life long change".
Yesterday was full of a lot of emotions, but one of the brighter spots came in the afternoon when the child life specialist from the pediatric floor came by to visit Sadie. She brought her painting the floor had made- its a heart that has little white hearts in it- the white hearts are made from each of the nurses and techs and child life staff members down there- it's their thumbs made into a hearts with their signatures beside them. At the top it says "the power of hope"- when Sadie was down on the Pediatric floor, Julia had asked her what her super power was and Sadie replied "The power of hope".
So we wait- but we do it with better numbers today- and we do it with a whole lot of hope.
It is completely healthy. Read it again, say it out loud, shout it like I did. Celebrate.
Sadie's heart maintained it's numbers last night, it did dip slightly lower than a normal rate last night but it stayed above the bench mark the doctors have set for it. She's also maintained a higher rate today as well. I think we are all cautiously optimistic. The fact that her heart function and numbers and testing has all come back good, and the fact that she's starting to improve with her rate points to the likelihood that her body is slowly shedding the pre transplant meds and as it does so her heart can function as 'normal'. I do say cautiously optimistic because this is only one day and we have to see improvement across many before that can be believed. The EP cardiologist said "we're not out of the woods of needing a pace maker but everything does look good". So it has to continue to look good before the pace maker plan can be pushed aside. For now everyone is ready to go in case she does regress and ends up needing to have one implanted- but the hope is that it's just an emergency plan and we wait and watch her improve.
Her transplant cardiologist said today "We're okay with her having a pace maker but that's a life long change- we don't want to make life long decisions when she's very stable and we can wait and monitor- lets spend an extra month watching if it means avoiding having another invasive procedure and not having to make that life long change".
Yesterday was full of a lot of emotions, but one of the brighter spots came in the afternoon when the child life specialist from the pediatric floor came by to visit Sadie. She brought her painting the floor had made- its a heart that has little white hearts in it- the white hearts are made from each of the nurses and techs and child life staff members down there- it's their thumbs made into a hearts with their signatures beside them. At the top it says "the power of hope"- when Sadie was down on the Pediatric floor, Julia had asked her what her super power was and Sadie replied "The power of hope".
So we wait- but we do it with better numbers today- and we do it with a whole lot of hope.
Comments
Debra Morral-Salman 15 days ago
Donna Pierson 15 days ago
Funensun1 15 days ago
Von Ward 15 days ago
Terry Clark 14 days ago
Norm Lane 14 days ago