Wednesday was our heart clinic day at Lucile Packard Heart Center. The time we spend there varies each time, but the last couple of times took less than an hour, so I presumed this visit would be the same. It was not! The whole appointment took 4 hours with Ellis getting an echocardiogram, EKG, and meetings with heart rhythm and heart function doctors. It was exhausting and the stress got to Ellis, because she cried many times throughout the visit. With questions asking about possible swelling in the legs or abdomen, belly pain, loss of consciousness, or can’t keep up with regular activities…it gets us wide eyed even though none of those symptoms applied to Ellis.
When I’m there, I go through the motions of doing the best I can to advocate and support, but my heart feels heavy. We smile but that hides a lot of insecurity. Unknowns paralyze my rational thinking. Literally, I keep crying out to Jesus in my mind “Jesus, have mercy on us.” I believe He understands more than I can even comprehend and that gives me reassurance that He knows the jumbled-up, tangle mess of fears better than I do. I can’t articulate what fears I have because it’s too frightening to even put them into words. Yet somehow we made it this far in one piece and still managing to live life to the fullest and squeeze fun from our adventures.
We have appointments to make in the coming month for seeing a liver specialist, getting labs done, seeing a neurodevelopmental psychologist, perhaps doing another sleep study, and hopefully starting speech therapy. I’m so thankful that we have a team to best care for Ellis and to monitor her health, but the litany of appointments we have to make and go to is overwhelming. We’ll try to get as much of those appointments done this summer.
34 responses to “Heart clinic visit and many fears”
I can feel the heaviness and anxiety in your words, Esther. Managing serious health issues dominates your family’s lives. Thinking of you and hoping you find peace and relief now that this episode is behind you.
Thank you for your kind comment and feedback! My heard does feel heavy after these visits and they trigger all my anxiety. It is challenging but they help us to appreciate the small joys of life too.
It’s a hard road you’re travelling, Esther, but the alternative doesn’t bear thinking about. Better to have all these tests and find a solution, if one is needed xx
Thank you for your thoughtful comment and insight!! The doctors stay vigilant of her condition and will seek treatment when something comes up. I’m so grateful for that but it can stress us out too.
I think you are managing remarkably well, Esther. It’s natural to feel fearful and overwhelmed in the fact of health challenges in the family. Sending good thoughts your way.
Thank you so much for your kind comment! Will take your good thoughts with us and remember them.
You’re most welcome!
ugh – so sorry about the 4 hours – and the tears – and hope the upcoming visits go well.
xxx
Thank you! I hope so too. These clinic visits are always stressful and it doesn’t get easier even though Ellis has been going to these appointments since she was born.
sigh – sending a blog hug
It sounds like a long road ahead, but I love that you are smiling and seem to be taking it in your stride, I really hope that continues.
Thank you for your sweet comment!! What can we do but smile and chug along. God has us in His hands and will watch over us, no matter what.
May Lord Jesus bring His supernatural wisdom, peace, and strength, love, grace, and fullest healing ❤️🩹🙏🏼✝️ Amen
Amen! God is so able and faithful. My faith wavers, but God has shown me time and time again Hid goodness towards us. His plans are good.
Esther, you managing serious health issues dominates your family’s lives. Beautiful smiley face selfie captured. Tack Care. Good blessing.
The appointments seem endless this Summer and trying to get them in before school resumes in the Fall, but there is a bright spot in that Ellis has been feeling better so there is that element of calm to balance out the specialists and medical procedures in the near future.
That’s a positive outlook to have! Ellis has been doing really well, so this takes a lot of stress off us. I hope we can get all those appointments in during summer, but that depends on the doctors too. Plus, we have therapy session too. Ack! Such a full schedule.
Good thing you had a break in Hawaii and then to Sausalito and San Francisco – day trips can help to break the monotony of the more-ordinary things on your agenda and you have a very full agenda.
You are so right! Mini day trips break up the monotony and gives us something to look forward to. We just got back from Sausalito and it was a great afternoon. It does brighten up our day.
Yes, it does break up the monotony. I’ll bet you loved Sausalito. I’m behind here – we had another storm this evening, so I shut down for a while and was late to get here to begin with. We had a guy shoot two police officers, then escape (in the area), so I was watching the news, then this bad storm. The guy has been caught and the weather is fine (for now anyway – we’re about to enter into a heat wave – temps in the 90s with a heat index of 100+).
That’s a lot of drama for one night! Geesh, summer is days away and you still have storms. How do you deal with all the fickle weather?!
I wonder myself sometimes Esther. We were supposed to have another one this morning, but here in my area we escaped it, but others had flash flooding and hail. I’m not looking forward to three days of intense heat – it is 85 and almost 10:00 p.m. now. But I’m really wondering what type of storm will break this heat spell which worries me more.
Mild weather for you, please! You have been through a lot with weather fluctuations and surprises.
I am exasperated by this heat Esther and I don’t know how you do it day after day in the Summer in California.
We bear it, but it’s tough when the heat gets too hot. Yesterday was a pleasant, breezy day; today is uncomfortably hot and dry. July is right around the corner, and I feel nervous of what weather we’ll be having soon.
Yikes, now all the comments are gone – I wrote you a note that I’ve had issues with my internet connection and had some old comments of yours to respond to and finally would do it now and there’s only one – why does WordPress do that? Everyone in Southeast Michigan was going on about the “cooler and beautiful weather today” … I had allergy shots and was grumbling about it as for decades … I mean many decades it was “walk-in” only, so I could have gone yesterday when it was still hot, but no, you have to make an appointment now every since COVID, so by the time I got out of it and went to the grocery store it was 11:15 and as I pulled away to drive home, it was 84 degrees. I do not call that a coolish day by any means. By the time I got home (5 miles away) unpacked stuff and toted it in, I felt like I ran that five miles. It took me hours to cool down … we have the 90s and storms on the weekend again, so I’ll try and get out Thursday and early Friday – tomorrow is like today only higher dew point, so I’m staying put. I’m nervous for you and I’m nervous for your wildfire situation since I heard your governor asking for National Guard troops to support wildfire containment when needed … thinking ahead to the dreaded wildfires.
Sending prayers 🙏 and hugs 🤗
Thank you, friend!!
I love you both. Life is eventually very hard for everyone, which few people bother to face or consider before they have to, when it is often too late. This is second true truth I know.
The first true truth I know is the overwheming power of love, which you exemplify daily. Love overwhelms every adversity.
I am so sad this is happening to both of you. But God is with you, every step. And so are all the people who love and admire both of you, like me.
Thank you, Cindy, for your amazingly sweet and thoughtful comment!! I was so touched by your words. I appreciate it. This blogging community has helped me immensely through every hardship. What a blessing!
So true that God is in our midst despite the troubles, but somehow there’s a lot of joy in our everyday lives.
Thank you, Raj!
I am so sad this is happening to both of you. But God is with you, every step. And so are all the people who love and admire both of you, like me.
Praying for you all, Esther *hugs*
Thank you so much!!