Sweet Sleep
In support of
Sadie Long
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Sadie Long
Today was a good good day.
Sadie has been cleared by the GI team to start solid foods. She immediately asked for strawberries and veggie chips. She’s been slowly eating but she’s had no trouble so far.
Sadie has also been taken off the high flow supplement oxygen and moved to a regular nasal cannula that’s slowly being brought down.
She had the dialysis line removed today.
She’s starting to come off all the extra heart support medications that transplant patients are on when their new heart is “waking up”.
She went on three walks down the hallway today and is able to stand all the way up. She still has to take breaks and sit several times during these walks but they’re becoming longer walks with less breaks as we go.
Sadie is down to only Tylenol for pain- which is amazing. She doesn’t complain about things hurting unless she gets pushed on or rubbed the wrong way.
Moving forward we have to keep an eye on her heart function and hope that it gets happy now that she’s less swollen. Her new heart is big big- which is fitting for Sadie- but it does push on her lung, so as she comes off the lung support medication she has to do a lot of lung exercises to make sure her left lung stays strong and can move air healthily.
Sadie’s blood pressure is also a bit of a problem- if her heart can get back to being happy post the kidney upset then she should settle out but in the mean time there’s a large line that has to be towed.
The absolute best news I have is this: Sadie slept all through the night last night- and as I’m sitting here writing this she’s nodding off after a very eventful day today.
The nurses and doctors and providers here are absolutely top notch. They have been so incredibly understanding and kind to us. They hold Sadie up and encourage her every single day. They give it their all and it’s been a huge part of why Sadie’s starting to mentally recover. It’s going to be a long road but she’s overcoming a lot of that initial anxiety that had her fight or flight triggered at every little movement.
Thank you for doing this with us. While I sit beside Sadie every step of this I can’t thank you enough for supporting our family, supporting her- and supporting me.
We’re back on the climb up the mountain- I’ve never been more grateful.
Sadie has been cleared by the GI team to start solid foods. She immediately asked for strawberries and veggie chips. She’s been slowly eating but she’s had no trouble so far.
Sadie has also been taken off the high flow supplement oxygen and moved to a regular nasal cannula that’s slowly being brought down.
She had the dialysis line removed today.
She’s starting to come off all the extra heart support medications that transplant patients are on when their new heart is “waking up”.
She went on three walks down the hallway today and is able to stand all the way up. She still has to take breaks and sit several times during these walks but they’re becoming longer walks with less breaks as we go.
Sadie is down to only Tylenol for pain- which is amazing. She doesn’t complain about things hurting unless she gets pushed on or rubbed the wrong way.
Moving forward we have to keep an eye on her heart function and hope that it gets happy now that she’s less swollen. Her new heart is big big- which is fitting for Sadie- but it does push on her lung, so as she comes off the lung support medication she has to do a lot of lung exercises to make sure her left lung stays strong and can move air healthily.
Sadie’s blood pressure is also a bit of a problem- if her heart can get back to being happy post the kidney upset then she should settle out but in the mean time there’s a large line that has to be towed.
The absolute best news I have is this: Sadie slept all through the night last night- and as I’m sitting here writing this she’s nodding off after a very eventful day today.
The nurses and doctors and providers here are absolutely top notch. They have been so incredibly understanding and kind to us. They hold Sadie up and encourage her every single day. They give it their all and it’s been a huge part of why Sadie’s starting to mentally recover. It’s going to be a long road but she’s overcoming a lot of that initial anxiety that had her fight or flight triggered at every little movement.
Thank you for doing this with us. While I sit beside Sadie every step of this I can’t thank you enough for supporting our family, supporting her- and supporting me.
We’re back on the climb up the mountain- I’ve never been more grateful.
Comments
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