Day 4 update
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The Browning Family
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The Browning Family
Harley Update β Day 4
Today was a quieter day, which was a nice change of pace.
Harley was able to go for a walk around our floor. Unfortunately, she isn't allowed off this level right now, but she was happy to get out of the room for a little while.
Her heart monitor remains a constant companion and is required at all times. The poor thing is always alarming as if there's an emergency. Because of Harley's unique heart rhythms, PVCs, and P waves, the monitors don't always know what to do with her heart. One minute it says she's at zero, the next it says she's at 265, while she's sitting here laughing, smiling, and feeling just fine.
To make things a little easier on the nurses, they now have an extension button outside her door so they don't have to run all the way into the room every time the monitor starts sounding off. At this point, anyone on the floor can hit the button because they all know it's probably just Harley being Harley. She also tends to drop pretty low while she's sleeping, so these poor nurses have definitely learned all of her quirks by now!
Today we learned that most of Harley's immunizations are providing excellent protection, but her bloodwork showed low antibody levels for two of them. She received two booster immunizations and is now good to go there. She will also be starting an antibiotic. The good news is that she was able to restart two of her heart medications as well.
The outpouring of gifts from Harley's Amazon wishlist has absolutely made her day. Every package that arrives reminds her how many people are thinking about her and cheering her on. She feels incredibly blessed, thankful, and truly loved.
Seeing so many people share our fundraiser on Facebook has also touched our hearts more than we can express. Through every share, comment, prayer, message, and act of kindness, you have made us feel seen, heard, supported, and loved.
The comments people have left about our family have brought tears to our eyes. It is both humbling and astounding to realize how much we matter to so many people. During a time that can feel overwhelming and uncertain, your support reminds us that we are not walking this road alone.
We were also really happy to have a little bit of normal family time today. We got to watch all four Toy Story movies and finished the night with Mrs. Doubtfire before heading to sleep. Sometimes it's nice to just be a family instead of patients and caregivers.
I also finally got a chance to take a shower today. Unfortunately, I forgot to bring a blow dryer, so it's wet hair to bed for me tonightβbut there are definitely worse things to worry about! π
Thank you for continuing to pray, encourage, and stand beside us. We feel every bit of it, and we are grateful beyond words.
Please continue praying for Harley's strength, for wisdom for her medical team, and for peace as we continue through this transplant evaluation journey.
β€οΈ Harley, Sylvia, Hubie, Amber, and Gracie
Today was a quieter day, which was a nice change of pace.
Harley was able to go for a walk around our floor. Unfortunately, she isn't allowed off this level right now, but she was happy to get out of the room for a little while.
Her heart monitor remains a constant companion and is required at all times. The poor thing is always alarming as if there's an emergency. Because of Harley's unique heart rhythms, PVCs, and P waves, the monitors don't always know what to do with her heart. One minute it says she's at zero, the next it says she's at 265, while she's sitting here laughing, smiling, and feeling just fine.
To make things a little easier on the nurses, they now have an extension button outside her door so they don't have to run all the way into the room every time the monitor starts sounding off. At this point, anyone on the floor can hit the button because they all know it's probably just Harley being Harley. She also tends to drop pretty low while she's sleeping, so these poor nurses have definitely learned all of her quirks by now!
Today we learned that most of Harley's immunizations are providing excellent protection, but her bloodwork showed low antibody levels for two of them. She received two booster immunizations and is now good to go there. She will also be starting an antibiotic. The good news is that she was able to restart two of her heart medications as well.
The outpouring of gifts from Harley's Amazon wishlist has absolutely made her day. Every package that arrives reminds her how many people are thinking about her and cheering her on. She feels incredibly blessed, thankful, and truly loved.
Seeing so many people share our fundraiser on Facebook has also touched our hearts more than we can express. Through every share, comment, prayer, message, and act of kindness, you have made us feel seen, heard, supported, and loved.
The comments people have left about our family have brought tears to our eyes. It is both humbling and astounding to realize how much we matter to so many people. During a time that can feel overwhelming and uncertain, your support reminds us that we are not walking this road alone.
We were also really happy to have a little bit of normal family time today. We got to watch all four Toy Story movies and finished the night with Mrs. Doubtfire before heading to sleep. Sometimes it's nice to just be a family instead of patients and caregivers.
I also finally got a chance to take a shower today. Unfortunately, I forgot to bring a blow dryer, so it's wet hair to bed for me tonightβbut there are definitely worse things to worry about! π
Thank you for continuing to pray, encourage, and stand beside us. We feel every bit of it, and we are grateful beyond words.
Please continue praying for Harley's strength, for wisdom for her medical team, and for peace as we continue through this transplant evaluation journey.
β€οΈ Harley, Sylvia, Hubie, Amber, and Gracie
Comments
Jess G 10 days ago