Clinic Days
In support of
Sadie Long
View Support Registry
Sadie Long
We have entered into clinic days.
Thus far I've realized a few things after months in the hospital:
-I think my ability to park has gone down to that of a teenager.
-Sadie is still an alligator to sleep with.
-I have never been more grateful for the ability to turn off the lights at night
-I am also equally as grateful for the blinds we can leave partially open to let the streetlight in because we don't sleep in the dark-dark anymore.
Life outside of the hospital is- exhausting. Sadie's new heart is in good shape but the rest of her- and honestly me- has some work to do to build up endurance again. We both get tired easily- at least she has a good excuse. So far we've had to have a few early mornings in order to get her blood work done at the correct time (730 am)- so we haven't found the smooth bliss of sleep just yet, but there is hope ahead. Sadie's clinic visit today came back good, her heart looks good- her labs look good, but it does come at a mental cost- she's not quite in a good place with having her blood constantly taken just yet. Her team and I are working on different strategies to help her.
Now is the time that all the medications she left the hospital on start to get adjusted. Her anti rejection medication has a little work to do to be at even levels, they're going to walk her back on the caffeine intake, and start to cut down her diuretics. Hopefully by the time we actually leave Gainesville for a bit she'll be off a couple of them and working on coming off a couple more. Which is to say something- the sheer volume of medication she takes is overwhelming to me to just sort into her medicine box- I can't even imagine having to take it all. Yet she does it- most of the time willingly- occasionally she needs a bit of encouragement. She is very much a warrior.
So far we've had good days- with some rough moments but we're getting through them and adjusting. We spend a lot of time just being with one another, for so long there has been cords and lines and tubes that have made it difficult to move freely and impossible to just hug and cuddle. We are making up for a lot of missed cuddles.
Harper starts school tomorrow, we spent the day on a video call with her- helping her pick out an outfit and what hair style she wants and picking out food for lunch. If cuddling Sadie is a bit of bliss- when we finally get home and get to snuggle as a family will be an answered prayer.
Thus far I've realized a few things after months in the hospital:
-I think my ability to park has gone down to that of a teenager.
-Sadie is still an alligator to sleep with.
-I have never been more grateful for the ability to turn off the lights at night
-I am also equally as grateful for the blinds we can leave partially open to let the streetlight in because we don't sleep in the dark-dark anymore.
Life outside of the hospital is- exhausting. Sadie's new heart is in good shape but the rest of her- and honestly me- has some work to do to build up endurance again. We both get tired easily- at least she has a good excuse. So far we've had to have a few early mornings in order to get her blood work done at the correct time (730 am)- so we haven't found the smooth bliss of sleep just yet, but there is hope ahead. Sadie's clinic visit today came back good, her heart looks good- her labs look good, but it does come at a mental cost- she's not quite in a good place with having her blood constantly taken just yet. Her team and I are working on different strategies to help her.
Now is the time that all the medications she left the hospital on start to get adjusted. Her anti rejection medication has a little work to do to be at even levels, they're going to walk her back on the caffeine intake, and start to cut down her diuretics. Hopefully by the time we actually leave Gainesville for a bit she'll be off a couple of them and working on coming off a couple more. Which is to say something- the sheer volume of medication she takes is overwhelming to me to just sort into her medicine box- I can't even imagine having to take it all. Yet she does it- most of the time willingly- occasionally she needs a bit of encouragement. She is very much a warrior.
So far we've had good days- with some rough moments but we're getting through them and adjusting. We spend a lot of time just being with one another, for so long there has been cords and lines and tubes that have made it difficult to move freely and impossible to just hug and cuddle. We are making up for a lot of missed cuddles.
Harper starts school tomorrow, we spent the day on a video call with her- helping her pick out an outfit and what hair style she wants and picking out food for lunch. If cuddling Sadie is a bit of bliss- when we finally get home and get to snuggle as a family will be an answered prayer.
Comments
Funensun1 9 days ago
Norm Lane 9 days ago
Von Ward 9 days ago