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@noCinErik
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Retired US Army Captain. Combat veteran. Heart warrior dad. Autism dad.
Joined August 2017
Ever since Evelyn was a baby, I've whispered in her ear, "I love you." Evelyn is nonverbal, but every now and again, there's a breakthrough. Tonight, she whispered it back three times. Every hard day was worth it, is worth it, for moments like this. I thank God for them.
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When you know you're supposed to be strong, but you can feel yourself breaking.
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What? I'm a veteran, and I'm telling you the VA is a shitshow. What does that have to do with Russia? 🤣
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We're on CPAP, and she's still not sat'ng where we'd like. Praying that she doesn't get any worse.
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Rest in peace Gus. You were surrounded in love and prayer. You are my hero. ❤️🙏.
We said goodbye to our sweet and beloved son, Augustus Elliott Joubert tonight, July 20th, 2024 at 6:50 PM. What a sweet gift. He changed our lives forever. The Lord is good. He gave us so much time together.
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The extubation went great. She looks soooooo much more comfortable. Her blood gas test looked great, and she's breathing comfortably. Now, for the hard road, getting ready for surgery (we hope). We'll be continuing to wean medications and oxygen support over the next week or
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My daughter Evelyn was born with half a heart due to a condition called HRHS. Despite our efforts to preserve her heart over the past almost 5 years, complications with her mitral valve and other issues have made a heart transplant necessary. We received this news two days before
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Evelyn had a better day today. Seeing slight improvement with her oxygenation. She tested positive for h-flu and moraxella on top of her RSV and adenovirus today. She's delirious, which is very hard to watch. Until she defeats these, we won't have a clear plan for her heart.
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As Evelyn continues to come out of sedation, she's having more and more trouble with her breathing tube. We've spent the last day and a half trying to help her keep from gagging and the gagging leading to vomiting. They're planning on extubating today, but her oxygen saturation
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Big news. Evelyn is going to have a med flight to Texas Children's in the next few days. I didn't even think we were going to be able to do this. This is great news for her care, and as we proceed to her surgeries/ next steps. Thank you, everyone, for your support and love ❤️
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Just in time, we received Evelyn's school photos. Evelyn is doing very well tonight. We're likely to be released from Texas Children's tomorrow. Her kidney function is improved, and our biggest fear did not happen. There is no fluid around her heart. They're also planning
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Evelyn was stable this morning, so I wanted to run back and get the rest of our clothes and whatnot. I was 2 miles from my grandpa's (where we're staying until the surgery(s)), and the doctor called to let me know Evelyn was being moved to the ICU. I about wrecked the car. She
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Let's go Gus! 💪❤️.
Hello friends. Gus is off ECMO support and stable. We are so thankful for this huge step, but we are also cautiously optimistic given how unpredictable Gus has been in the past! The goal is to keep him stable and slowly remove support. We're not out of the woods. Keep praying!
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Evelyn is having a rough morning. We're going to have to escalate her oxygen support some more. She still gives me little smiles when I hold her hand.
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Approved! Let's go!!! Just some basic administrative stuff they have to figure out, but we're good to go ❤️. Thank you all!!!.
Today, we're praying that insurance covers our flight to Texas Children's. Evelyn still needs inpatient care, and it would be ideal for her to get a full work up for her procedures/options while in inpatient care at Texas Children's.
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Thank you all for your prayers, support, and love. Evelyn is in a great place.
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Evelyn update. Her oxygen has been stable today, and her work of breathing has eased. We're concerned that weening her oxygen support has been very slow. This could be due to some changes that have occurred in her mitrial valve leak. Which is not good. We'll observe today and
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When Evelyn was born, we knew her life would be full of challenges. Through it all, she's always been a happy warrior. Today, she looked me in the eye and squeezed my hand. It meant the world.
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Evelyn is having a rough day, but they've been able to remove and reduce much of her medicines and supports. She moved off of bipap and back to hi-flow air this morning, which is a move in the right direction and will help her comfort level. The real challenge is balancing pain
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Evelyn is off of CPAP! She's not happy with the hi-flow, but we're trending in the right direction. Since it appears she did not have any viral infections, we may still be able to keep her surgery date. While I hope that's the case, if they feel she needs more time to rest, I'm
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It's official. Evelyn is approved for a heart transplant. I'm grateful that we live in a place capable of this surgery. Her physiology is complicated, and the transplant will not be straightforward. I'm very confident in their capabilities, and I'm thankful to God we live here.
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I was blessed to have been able to say goodbye to Gus today and meet his parents, Mark and Amanda. They are a truly beautiful family and will always hold a very special place for my family. Mark gave an incredible eulogy to Gus that had a profound impact on me. Thank you for
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Today, we're praying that insurance covers our flight to Texas Children's. Evelyn still needs inpatient care, and it would be ideal for her to get a full work up for her procedures/options while in inpatient care at Texas Children's.
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Evelyn was able to stand today 😊 Obviously she's very weak and uncomfortable, but it was very good for her. Riding the elevator up from the Cafe, I ran into one of her cardiologists from our last ICU stay. She was amazed to hear that Evelyn was able to avoid an artificial
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Evelyn is all tuckered out. She did two laps around the floor today. Her oxygen saturation is looking great. Tomorrow is a big day. Swallow study and another ECHO to see how her heart is doing. The doctors are leaning towards waiting for her scheduled heart surgery at the end
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She's happy. For those of you familiar with single ventricle physiology, she's had over a 10% swing in her O2 just by dropping in altitude from 4,200ft to sea level. Greater than that even. She's on 26% vs 50% O2. I'm in shock right now. In layman terms, by taking her to sea
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Short update: Evelyn had a great morning, but her breathing sounded a little raspy. After our time at the park, she took a nap and an hour into it, she began having a coughing fit followed by respiratory distress. By the time we arrived at the ER her O2 was 60% and her heart rate.
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@FunkerActual Mom- my son is having a mental break down and looking for suicide by cop. Ogle County Sheriffs: Leeerrroooyyyyy Jenkins!.
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Gus has a big day tomorrow! You've got this little man 💪❤️.
Hello, everyone! Tomorrow's looking to be our next "big day" -- assuming nothing too exciting happens overnight. Overall, Gus had a pretty good day today. We are attempting a chest closure tomorrow. We're scheduled for 8:30 in the morning. Please pray it goes well and his heart
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Evelyn got home, immediately found her stuffed Minnie, and ate all of her favorite treats. Now for some gift opening and Princess and the Frog. ❤️. Her surgery has been moved to the end of April. The surgery will be much more complicated than we were hoping, so please keep us in
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Yesterday was supposed to be Evelyn's heart catheter that we've been waiting months for. Instead, we spent the day at the ER. Fortunately, she does not need to go to the ICU yet. I'm praying that she recovers from whatever this is. She's been coughing and having a lot of nasal
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I'm not able to do a long post right now, but Evelyn needs a heart transplant. Thank you all for your love and prayers. Just need to process this.
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Evelyn is off of oxygen support and is already up to her normal shenanigans! I can't even keep her in her bed anymore. lol. We do not have the results of her ECHO yet and we're waiting on a chest xray. If she's looking good, we might be going home today. 😊❤️
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She's cozy and enjoying The Incredibles right now. I lied, I just looked over, she's asleep. Anyways, good day today. She's tolerating a lot more movement and starting to eat. No significant updates, which is a great thing.
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I read Evelyn's ECHO results and scared myself. I was about to breakdown after reading the ECHO, but I remembered that in the past, I've misinterpreted medical language. I was able to get a summarized interpretation from the PA on duty and she informed me that there were no
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Evelyn is back 😊. It's nice seeing her smile again. Her left lung is being a problem this morning, and we're not progressing as fast as hoped for. I'm not overly concerned. She's not on any ambiguous schedule, Evelyn does things in her own time. Chest tube and arterial
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Evelyn is doing well. They had to increase her oxygen support, but she hasn't needed to go back on a breathing tube. She'll sleep throughout the night, and we'll see how she's doing in the morning. Long story short, we're going to get a reprieve for a few months before the next
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Gus is still with us. Please pray he survives and that the damage wasn't severe.
Friends, for the moment, Gus is still with us. It's remarkable, but how much he is really with us, and how catastrophic the damage he's suffered, only time will tell. How much time? Could be minutes, hours, days. Not certain. We have a beat and a pulse. Potential internal
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Gus will always be one of the bravest strongest people I have ever known. He's my hero. When I almost lost Evelyn this winter, Gus and his family anchored me when the current was too strong. I will forever remember him and be grateful for the time he had.
Hello friends. Here is our obituary for Gus. Hard to believe it's been a week since we handed him over for what felt like another routine procedure. Thanks for all your support and encouragement. **In Grateful and Loving Memory of Augustus Elliott
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Quick update. Evelyn has been awake and alert since 3am. She absolutely hates her nose cannula, but she is happy to eat some jello and watch Moana. I'm exhausted, but my heart is full right now.
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Poppy is going home!!! ♥️.
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Gus got to go outside! His progress is wonderful. I pray we get good news about his kidneys soon. Stay strong mom and dad! ♥️.
Gus is making strides. He's off IV sedation. His a-line was removed & he's getting cuff pressures now. He got to go outside with Mom to the hospital garden today - only his second outing! . Please pray for a kidney imaging test planned for tomorrow. Renal function is still poor.
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Minnie pic. Always a good sign when Evelyn wants Minnie nearby. Possibly getting her chest tube removed today.
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We're out of the ICU! Home tomorrow? . They indicated that her surgery would likely be delayed a month. I'm not even upset. If it sets her up for success, then we'll be happy to delay it.
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Thinking about doing a daily Evelyn pic until we get to her surgery. Not much to update otherwise. She's absolutely beyond happy to be out of the hospital.
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Evelyn and I are on the way to Texas Children's. She has something upper respiratory, and the doctor was worried.
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My 13 year old son asked a girl to be his girlfriend, but he broke it off with her because she was bi. I asked him why he ended it and he said something to the effect that at their age everyone is trying to fit in with this LGBXYZ stuff and he doesn't want to be with someone more.
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To make up for the picture earlier, here's a more recent picture after she ate and watched some Shrek. This is the Evelyn I look forward to seeing every day. Echo didn't stop by today, so we'll see them tomorrow. Evelyn will likely be off of oxygen support in the next hour. 😊
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Evelyn turns 4 today! 😊❤️. She's not feeling well right now, but I'm hoping to have her open presents later today. We'll be sending our thankyou's to those of you who provided contact info.
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Poppy is finally going home!!!❤️❤️❤️.
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Happy Valentines Day, everyone! We're having a great day. Evelyn will be going "home" soon!. For the next 3 weeks, Evelyn will be recovering until her next surgery. Our family will remain separated between Texas and Nevada until after the surgery. We don't know where we'll land
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Evelyn had a decent day. They intended to move us from the ICU, but her oxygenation is still temperamental. I think she's just telling us she needs another day. Maybe she just likes the view? 🤷♂️
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Poppy is another awesome heart warrior. Love seeing that she's continuing to improve. ❤️.
Poppy’s color looks so much better today and she just now passed a 2hr pressure support test. The goal is to do another one tonight. Altogether she’s having a much better day than yesterday thankfully 🤍
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Evelyn had a rough day. We're finally done with our appointments for her heart transplant evaluation. We're doing a 24-hour holter test (wearable EKG), and then we should be done with everything. They hold medical review boards every Friday, so we'll likely find out next
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@mark_joubert I'm praying for Gus. We're in much the same situation with our 3 year old right now. She's already had a Glenn so she can't get ECMO. Her lung has been collapsed since Monday. She's been delirious the last two days. It's hard to watch. We're praying for you all.
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Gus update. It's wonderful seeing him off of the breathing tube.
Hello, friends. Gus is doing well. Today, one of his chest tubes was removed because it has not been draining. The other one remains for now, but may be out soon. He's being weaned from sedation, which may be a challenge. Still praying for his kidneys which haven't recovered yet.
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Just TWO days of wearing glasses at school and look at Evelyn! We've been trying for weeks to get her to wear them. This makes me SO happy. 😊
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Evelyn is still not feeling well, at least we've avoided the hospital so far. I'm really sad that we weren't able to celebrate her birthday, but we will as soon as she's feeling herself.
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She's not a fan of PT, but after her walk she's doing really really well. We'll likely be off of oxygen support by the end of the day shift. They haven't done the ECHO yet, and I'm really nervous about it. She has high blood pressure now that could indicate some issues with her
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Quick morning update.
@2024strongTx She's doing good. We're going for a walk later. There's some concerns, but nothing to write about until we've done an ECHO.
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Being a dad and not being able to explain to your daughter what's happening is torturous. We've been in the cardiac ICU since the 28th, and it's physically and emotionally exhausting.
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Palate cleanser. Here's Evelyn a few days ago. I can't wait to see her running around and smiling again.
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This is what Evelyn usually is like. She loves climbing, swings, and Minnie Mouse. Today, she passed her spontaneous breathing trial, and we're one step closer to extubating from her oxygen support. The next few days and weeks will determine next steps for he heart. We're
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GM! Today is the day! We're waiting on the anesthesia team to pick Evelyn up, and she's in a very good mood. We'll update as best we can.
For those who are asking about Evelyn, here's a short summary of the upcoming surgery.
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Evelyn update. Today was her post-op. The surgery did improve her mitrial valve function. Her cardiologist and I agreed that we're going to try for her next surgery this fall or winter rather than waiting until next spring. Until her heart catheter in September/October, we
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We love you, Gus. 💔😢.
Saying our goodbyes.
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@SteveSlatonAZ YOU ARE A STOLEN VALOR LOSER! These aren't liberals attacking you. This a veteran's tired of grifters and liars like yourself. WE WON'T STOP.
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Evelyn update. Her appetite is finally returned, and she's way too active 😂. We're flying back to Nevada to collect some of our things and drive my vehicle back to Texas. A little father daughter road trip. It will be nice to see the family, but we're going to keep Evelyn
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Not even two hours before we had to rush to the ER yesterday, we had zero inclination anything was going wrong. Evelyn was running around, playing on the swings, and spending time with her 93 year old great grandfather. The first sign of trouble, which wasn't even a sign, was
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Evelyn says sprinkles are for winners! Having a much better day. 😊
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Nothing significant to report. We almost had to go to the hospital yesterday because her doctor's office pulse ox couldn't get a good reading of her O2, but it I was able to resolve it. Surgery end of March. I'll post details of her conditions and upcoming procedures soon.
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Evelyn had a post-op appointment today. The only news is that her lung, left lower lobe, appears to be collapsed or deflated. But, she's so able to saturate her blood above 75% even when agitated. Something she couldn't do before this last surgery. They expect her lung issue
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