We all had an emotional week going in with fear of what would come next, should the heart pressure number be high and the heart dysfunction worsening. But miraculously, yesterday’s heart cath went well and Ellis’ heart pressure numbers looked great. It was a miraculous surprise, because we were expecting worse numbers than her last cath 2 years ago.
To make her heart work more efficiently, she got a balloon inserted in an artery and some coils, so we had to stay overnight for antibiotics and monitoring. Instead of the regular cardiology floor though, we were placed in the ICU unit: the ambiance on that floor is drastically different and more serious. We still managed to make the best of it and go for a wheelchair stroll to the Cafe and watch loads of Bluey episodes on the Disney channel and take fun selfies.
While I was snoring like a lawn mower (Ellis’ words), I woke up here and there to her crying, wanting to go home and just being sad thinking about the day. Although we had an uplifting talk before I conked out, she kept crying.
Even though this week was crazy with me going to the ER early Sunday morning and for Ellis’ cath mid week, I’m amazed and blown away by the positive heart pressure number! So thankful to God for this reprieve. We are all back home together, Ellis is napping on the couch wrapped in her star blankie, and Chris is picking up take-out for lunch. Life is good!
Thank you, everyone, for your prayers, encouragement, and well wishes! They always boost our spirit and give us extra cheer.
24 responses to “Discharged and home now!”
It’s such a grace that Ellie has a family behind her who have so much love to share. We’re learning so much about walking the shaky line of caring for chronic illness with Amelia’s hEDS. It isn’t an easy path but you have your priorities right. Love and many blessings, Fran
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Thank you, Fran, for your love and encouragement! It’s not an easy task to navigate chronic illness for a family member. There’s so much emotion and fear attached to the caretaking. And all the new terms you need to remember and first: my brain is overwhelmed with numbers, terms, medications, & appointments! I’m grateful for God gives, but the emergencies take a mental toll on me.
I can’t imagine how tough it is to care for and see your sweet Amelia affected by hEDS. I’ve never heard of it till you mentioned it on your Instagram. It’s wonderful she met a doctor who was able to properly diagnose her condition and get the right treatment, just right for her. She’s in good hands with you and her mama!! Sending love and hugs to you all.
So good to hear. What a relief!
Wonderful that everything looks good with the procedure and y’all are back home. <3
I’m really glad you’re home. I will say that, even though I wouldn’t hope for illness or a trip to the hospital, I’m more than impressed with the effort to create a pleasant atmosphere there for the kids and families. It sure does look like the holiday spirit is alive and well there!
Yes, it’s wonderful how the hospital takes great effort to create a pleasant environment for patient and families! One Christmas many years ago, firemen came to each patient door and sang Christmas songs with a rolling 🎄 filled with bears for each kid to choose. Last Christmas, Santa came stopped by and took pictures with the kids.
We so appreciate it!
Child Life makes it so so that kids don’t feel like they’re missing out on the holidays! They are special people keeping the positive spirit alive. Also, nurses make the experience bearable.
Sweet brave Ellis! Sending prayers for a speedy recovery ❤️🩹
Thank you, friend!
Glad you had positive results and even though you had to stay overnight, the festive atmosphere at the hospital and the good result made that inconvenience less bothersome. I hope this good trend continues for Ellis and your family.
I hope so too!! This year, Ellis has been in the hospital 7 times starting with her gtube stomach closure surgery in January. It’s been an epic year
Wow! This mama is tired and ready to start 2025.
I said something similar last year. Lol.
Linda thank you for journeying with us. I appreciate it so much.
I would have guessed five times, but seven – wow. Yes, I should have remembered the gtube surgery because her first trip to the hospital you blamed yourself for agreeing to it as she couldn’t eat and it would have been an alternative. Yes, do begin 2025 on a better note. You are welcome Esther – you and your family are in my daily prayers.
I regretted that decision so badly at the time, when the dietician was thinking of nasal tube feedings in September.
It’s only 7:30 and I’m pooped out on the couch. More rest is needed!
I remember you said that because it would have been instant nourishment when Ellis was not able to eat due to constant nausea. But you caved in back in January as Ellis wanted the gtube removed – you were just making her happy with that decision. You need more rest … good thing school end soon! Oh yes, Christmas though. 🙂
With Ellis’ condition, I get decision fatigue. The repercussions of some decisions have long-term effects, so it worries me when I make them. I guess it’s okay that we don’t have the g-tube anymore. The upkeep is inconvenient and having a button sticking up from her belly made her self conscious. We’ll make do! Hopefully, there will be no need for enteral nutrition.
I am looking forward to Christmas. This upcoming week is a bit crazy with dentist appointments for the kids, last week of school, crochet lesson for Ellis, and video game tournament for Elliot. Then, it’s all smooth sailing. Whew…
Well, I remember you were kicking yourself, but you could not foresee the nausea issues or you likely would not have relented. I’m sure the kids are looking forward to the respite from school just like you are. Then you count the days until Summer vacation!
Thanks God, iam so glad you’re home. Sending prayers for a speedy recovery 😊🙏I hope this good trend continues for Ellis and your family. I know you are so tired & much get struggle but you are so strong 💪 & brave mother. I will pray to God to start your 2025 going good , healthy & wealthy . God bless you, Tack Care,My dear friend Esther 🤣
Thank you, Raj! I hope a healthy trend continues for us.
Wet, Eshter!
So sweet Napping Ellies.
She had a relaxing nap at home. The other night she did a lot of crying from homesickness, so she was exhausted. I was exhausted too…I had the biggest dark circles under my eyes.
I know u had lot of struggle. But you & your kiddos very strong. I have much emotional but what can I do, Esther. I will pray to God for your & your kiddos.
I wish you a New Year…Happiness, joy, peace, health!So that children do not know the need,So that slander does not touch you,So that the day is bright and joyful,So that the peaceful sun shines,So that the world is made up of good people,So that everyone has health,So that friends are always close,So that they never betray,So that if love is forever,so that there is no sadness in life!So that all your dreams come true,So that you never have any problems,So that you don’t know either trouble or need,So that everything you want comes true!
This year has been a tumultuous one with lots of medical emergencies and heartache. But thank the Lord that we have managed to overcome those struggles and still be here happy and well. I have my moments of panic, but I remind myself that God is in control and all my worrying will do nothing productive.
I hope you are well too and always good to hear from you!
You have moments of panic, but you remind your self that God is in control and all you worrying will do nothing productive.🙏! Iam very well, of God bless, Eshter!