The Real Beauty & The Beard

The Real Beauty & The Beard "Discovering real strength in beautiful differences." Please visit our YouTube channel to learn more!

Helping you to discover some real beauty in your life by highlighting the good being done in the special needs world.

Jenelle is finally back home!! 🙌🏼After spending 9 nights at the rehabilitation hospital Jenelle was discharged to come h...
10/10/2024

Jenelle is finally back home!! 🙌🏼

After spending 9 nights at the rehabilitation hospital Jenelle was discharged to come home! And just in time for her birthday on Saturday! What a gift!

She is still recovering from her month long fight to get her breath back. Her care will continue from home with in home health care by nurses and doctors, and continued occupational, speech, and physical therapy for another month. At the end of the month she will be reevaluated to see if it needs to continue or if she can get back to her full life of work and fun again.

As you can tell from the pictures, she is back to being our happy lady again! Light has returned to our house (along with her sassy attitude from time to time 😅🤣).

This past month has been a roller coaster of emotions for all of us. So much uncertainty. A few times we weren’t sure if she would ever come home, stuck on the ventilator. The sight was not pretty, the future was dark. Never getting to see her Mom again. Never being able to hug us again. Never being able to laugh and smile and bring the joy again. I am so happy and grateful to say those fears never came true!

We are all so happy to sleep in our own beds again. To sleep in quiet again. As fun as slumber parties in recliners and cots were together - we never want to go back!

After talking with speech therapists and doctors, we’ve came to the conclusion that at some point Jenelle took some food into her lungs, as she had aspirated pneumonia which exacerbated fluid into her chest and abdominal cavities. We have no idea when that may have happened, but most likely days if not a week or two before Jenelle complained of chest pain and went to urgent care.

Many of us eat our food too fast, Jenelle and myself included. It is now our duty to slow down, enjoy our food, put the fork down after each bite and breathe to make sure this event never happens again in the future.

My hope is that anyone who reads this takes the same precautions. We all could use a little slowing down in our lives, with food and other things. We move too fast. We try to do so much. We feel like we are running out of time. This is a FALSE story we tell ourselves. We have plenty of time to slow down, and if we don’t - our time could truly run out. We cannot let that happen!

Thank you to all who sent their love, prayers, support, and good energy to Jenelle and our family. Thank you for the dinners and the offers of help. Thank you for bringing her world together to give her the strength to pull through.

Jenelle is a fighter. Meant to do great things in this world. Meant to change lives for the better. Shes not done. It wasn’t her time. So many more lives to touch.

I think she has recovered faster than many of us expected her to, medical teams included. I have never been one big on the higher power, or talking to God. But I truly believe that someone, something, heard all of our prayers. Connected all of us to come together and give Jenelle the energy and strength she needed to come home! There is something greater than all of us, or maybe it was the power of all of us? Who can be certain, but I know I am grateful!

So thank you! I cannot be more grateful to everyone who helped. I debated posting early on and asking for help, but only for a few moments. I knew she needed the help - and you all did not disappoint! Our girl is BACK!

Keep it coming, she’s not all the way back to life yet, but we are certainly on the way! I love you all! 💙💛Thank you!! 🙏🏼

Okay been some time since I sent an update….Jenelle was released from the Surgical ICU on Friday and moved down to a Car...
09/30/2024

Okay been some time since I sent an update….

Jenelle was released from the Surgical ICU on Friday and moved down to a Cardiovascular Step Down Room on Friday!

Friday was the last day she really was on any oxygen. She finally got some sleep in the more quiet and darker room. Less poking and checking in on her. Nothing really connected to her besides some things on her chest tracking her heart and respiratory rate. Just some more breathing treatments for about 5 minutes every 4 hours or so. She was pretty tired after 48 hours of not sleeping in the ICU and not much on Friday.

Dad spent the first night with her in the recliner. I stayed with her the last two nights. We've been watching lots of movies together, and quite a bit of football.

We slept in til about 11:30 on Sunday. She needed the sleep. She looks much better now and has some more energy. Joking and playing little pranks on her nurses. She was doing some more snoozing this morning.

PT has been here and she's been walking some laps. Doing really good they say. She just got switched to eating regular food again.

Today around 3:00 pm she will leave the hospital! She will be transferred to St. Luke's Rehabilitation Center. They want to do some more physical therapy and make sure she can move and breathe well. Almost three weeks in a hospital bed, mostly sedated, she'll need to get her strength back, especially for the stairs at home. She will get three hours of therapy everyday, spread out in small chunks.

She will have a private room again, and someone will be able to stay the night with her if she continues to want that, might end up being me most nights. The average stay there is typically 7-10 days. Hopefully she'll be out by her birthday on October 12!

Jenelle is missing work and wants to go home but I think I convinced her she deserves a vacation and it's like staying at a hotel - which she always loves to do. So that perked her up a bit.

She's doing great and we can see the woods clearing up! Almost home!

I guess it’s time for an update on The Real Beauty! I’ll try to keep it as concise as possible 😅The past week has been a...
09/25/2024

I guess it’s time for an update on The Real Beauty! I’ll try to keep it as concise as possible 😅

The past week has been a long one. On Friday they took Jenelle off the ventilator and removed her breathing tube. Tried oxygen through her nose, but she’s a bit of a mouth breather and they ended up putting her on a bipap machine with a mask and headgear.

That girl put in about 7 1/2 hours of hard work breathing on her own. But her lungs weren’t strong enough, she wasn’t able to take deep breaths to fully fill her lungs. I stood by her side, holding her hand, coaching her the entire day. She was a fighter! She was making progress!

Around 3 that day the doc came in and said Jenelle was doing a great job but was afraid she was going to wear herself out and get tired. He wanted to prevent an emergency from happening overnight so they took action to put her back on the ventilator and breathing tube.

That was a really tough day for all of us. Most tears I’ve shed the past two weeks. The scary uncertainties. The progress felt like all for naught and we were back to Monday wondering if she was ever going to be able to come off the ventilator.

But the reality was, Jenelle was taking steps forward. Her lungs were still healing from being flattened by fluid. She was still fighting pneumonia.

There was talk of a potential tracheotomy to continue to allow Jenelle to heal with ventilator support. You can only put in and remove a breathing tube so many times without too much risk to damaging her windpipe and vocal cords. This option is still out there, but I am happy to say after the last few days I have confidence we won’t get there.

She spent the weekend resting and healing. She was looking better everyday. She was starting to become very responsive, starting to communicate, trying to talk. Nodding and shaking her head. Playing with my beard and smiling 🤗☺️

Jenelle does her “office work” in her free time. She rewrites the Harry Potter books word for word with herself as the main character. She calls them her plays.

I decided to start reading the books to her. Switching Jenelle for Harry, witch for wizard, and all the pronouns. This was a nice brain challenge for me to say the least 😅 Jenelle Potter came to life!

Sunday, I spent the night reading to her. After I’d finish a chapter, I asked her if she wanted me to read another. She always nodded yes 🥰 I had to cut it after 4 chapters so we could both get some sleep. It was the best night in the hospital so far 🤗

Monday they did some breathing tests and decided to test Jenelle’s lungs again. That morning she went 30 minutes breathing on her own without the support of the ventilator. That afternoon she went about an hour!

Tuesday she made it 3 and a half hours straight 🙌🏼

This morning, Dad and I made it to the hospital, pleasantly surprised to see Jenelle had the breathing tube removed 🎉!! Just watched them wheel the ventilator out of her room just moments ago 🙌🏼💪🏼🥳

Jenelle is still getting constant oxygen through her nose via another machine, but this girl looks “happier than a pig in sh*t” without her wrist restraints and her mouth free from obstruction! (Thank you Dad for that quote 😅)

Jenelle is talking, quite horse, but talking. First thing she asked Dad was how was Mom 🥹🥰

She is in such great spirits! Listening to music on her headphones at the moment.

We are not fully out of the woods yet, doc says the first 24 hours are very crucial - but I think the fact that the ventilator is no longer next to her bed is a very wonderful and telling sign!!

Thank you all for your continued love and support for Jenelle. I believe whole heartedly you played a big part in her healing and ability to get off the ventilator. Jenelle is a fighter, but some fights we can’t do on our own! She still has a long road to full recovery, so don’t quit on her yet! Still got some healing to do!

There is a different air in the CV ICU today. It’s warm (although I still need a sweater), it’s inviting, it’s joyous. It’s a winning atmosphere. Nurses that took care of Jenelle over the last 13 days have been coming by to say hi and see how she’s doing. They’ve all been dying to hear her voice. The word is getting out…

I am pretty sure we’ve got our girl back! 🙌🏼

09/18/2024

We were just told by the doctor that Jenelle is doing most of her breathing on her own, with a little support from the ventilator!!

They want to get the swelling of her tongue down today and tonight but sound pretty confident Jenelle will come off the ventilator tomorrow 🙌🏼🙌🏼🙌🏼🙌🏼

Sedation medications are going down. She’s doing most of the work! Dad and I are feeling so much better!!

Jenelle is past the most urgent part of her battle!! 🙌🏼🙏🏼Thank you all so much for your love, support, prayers, and ener...
09/18/2024

Jenelle is past the most urgent part of her battle!! 🙌🏼🙏🏼

Thank you all so much for your love, support, prayers, and energy you have sent her way! It’s working! Please keep them coming, she’s not quite done yet!

Time for an UPDATE! Let’s see… where did I stop last, oh yes, the second chest tube on Monday….

They were going to put a second chest tube in her lower chest cavity to drain what fluid was still keeping the bottom part of her right lung completely flat.

Upon reviewing a pre procedure ultrasound, the doctor decided not to add the second chest tube and kick it back to the cardiothoracic surgeon to assess the best route to go. The fluid just seemed too thick and they didn’t want to perform the chest tube to no avail.

They also noticed that not only was the fluid suppressing her right lung and found in her abdominal cavity, there was some evidence that it had begun to produce near her left lung.

We spoke to the cardiothoracic surgeon late afternoon on Monday, he presented two options:

We could chest tube with medication that would break it up and see if that worked. Taking three days to see if it did or, if not, we would have to move forward with the second option.

The second option, would be to start with an arthroscopic procedure to remove the fluid via camera/suction. This would potentially be followed with a more invasive procedure to open up her chest cavity, sawing through a rib or two and really getting a good view to remove whatever fluid remained in her chest and abdominal cavities.

With Jenelle being on a ventilator, time is of the essence! The longer she remains sedated and on a ventilator, the more difficult it will be for her to come off it.

Immediately, Dad and I both agreed we should move forward with the surgery. No need to delay anymore with what ifs and maybes.

Late Tuesday morning, Jenelle went into the operating room. We were told the procedure could take up to 4-5 hours, depending on what they found.

Jenelle was out in ONE HOUR 🙌🏼🙌🏼

The arthroscopic procedure went perfectly! There was no need to open her up. The emergency of giving her lungs the space they need to breathe again was no more!

They transferred her to the surgical ICU, where she currently is still sedated and on a ventilator.

There was hope last night when I said goodnight that they may be able to start weaning her off the sedation and ventilator today. But now we know she is battling a form of pneumonia, and she will remain on the breathing tube while getting antibiotics to fight the infection. They will perform some more bronchoscopy procedures, using the breathing tube to help clear out any mucus and pneumonia build up that remains inside of her lungs.

The settings of sedation and the ventilator have been lowered! Once her need of oxygen hits a certain level, that is an indicator that her lungs are strong enough to begin the process of removing the breathing tube.

Jenelle is making progress in the right direction finally! 🙌🏼🙏🏼🙌🏼🙏🏼

Our hope is that, with your continued prayers and support, she may be strong enough to begin weaning off her support as early as tomorrow!

So please keep doing what you’re doing! It is CERTAINLY MAKING THE DIFFERENCE! I cannot thank you enough. How much it means to me. How many tears have come to my eyes reading your comments and direct messages of love and support. There are SOOOO many people and lives out there that Jenelle has touched for the better. Just one interaction with her or someone else like her can be life changing, and I cannot express my gratitude fully for the people who have stepped up and helped to CHANGE HER LIFE for the better right now! It means the world to me, as Jenelle IS MY entire world. I appreciate you! I love you! Please keep it coming until my sister can come home and ask me about what’s for dinner again 🙏🏼😅🤣🤗🥰🫶🏼💙💛🙏🏼

UPDATE on the greatest person I know:Sorry I have not sent an update about Jenelle, actually haven’t to anyone. Felt lik...
09/15/2024

UPDATE on the greatest person I know:

Sorry I have not sent an update about Jenelle, actually haven’t to anyone. Felt like that was all I was doing the first two days and just didn’t feel up to it yesterday.

Jenelle is still sedated and on a ventilator. The initial chest tube was able to drain the upper portion of fluid surrounding her lung. But it has since basically stopped draining. The medical team is not sure if the fluid has its own little pockets they need to free or what is exactly going on.

Her entire bottom of her right lung is flattened and not functioning.

The cardiac thoracic surgeon was consulted this morning and ordering a current CT scan to see what they are working with now.

Her current X-rays don’t show her liver and other organs so they think that the fluid is in her abdominal cavity as well as her chest cavity.

They have two options, one would be to put another chest tube in the lower portion to see what drains, or do a surgery to cut open the cavity - sawing through a rib bone - to get in there and suction it out. May do both depending on the CT scan and how things play out with a second chest tube.

Surgeon thinks the chest tube may be the first route but all depends on what the CT scan shows.

She will remain sedated on the ventilator through all of this, procedures will most likely happen on Monday.

Delicate process as they cannot take too much out too fast because the lung needs time to get back into functioning form slowly. Too much at once could be a shock to her lung. There is also a slight worry that her lung may be compressed for too long that it could be damaged/scarred in some way. Hopefully not the case.

We are still waiting on cultures to confirm what the fluid is. We do know that those with Down syndrome are susceptible to auto immune diseases which is one thought on the table. The other word that has been dropped once I will not say as I pray that is not the case.

It’s crazy to think that this picture was just last Sunday. Jenelle was herself and in great spirits as we celebrated Grandparents Day with the family at the Willie Nelson, Bob Dylan, and John Mellencamp.

Please continue to send your prayers, love, and good vibes and energy to Jenelle! She’s needs everything you can muster! 🙏🏼

I cannot thank you all enough for your love and prayers you’ve sent to Jenelle!A little update here, please reach out to...
09/14/2024

I cannot thank you all enough for your love and prayers you’ve sent to Jenelle!

A little update here, please reach out to me directly if I can answer any questions you may have any further….

Procedure today went well. They inserted a chest tube to begin to drain the fluid surrounding her right lung.

She has been sedated and on a ventilator since last night and will continue to be overnight as the fluid continues to drain.

Good news is that the fluid was not bloody, but it is thick and draining slowly. She will most likely have another procedure tomorrow to get a larger tube put in. Lab tests have been sent off but we may not know what the fluid is for a few days. Still a mystery.

More good news is that Jenelle looks very peaceful as she is resting tonight.

Even more good news is that the ventilation settings have been lowered from what they were last night. So making baby steps in the right direction.

Yesterday, her right lung was completely surrounded by this mysterious gel-like substance and was pretty much collapsed and she was only breathing with one lung.

As the fluid drains, her lung is beginning to get back into the swings of things. Slowly but surely, we are confident she is on her way.

She is stable. She is strong. She is peacefully resting through the night. Surrounded by family. Feeling all the love and energy you are sending her! Continue to bring it, she still needs it!

Love you all, I cannot thank you enough. I cannot express how much the outpouring of responses means to me. For those who have reached out directly, you are amazing. Your love and prayers and energy will bring Jenelle back to the wonderful, joyous and inspiring woman we all know her to be! 🥰🤗

09/13/2024

Please send all your love, prayers, good vibes and energy to my sister, Jenelle! 🙏🏼 currently in the ICU due to fluid build up around her right lung. Getting through the night incubated on a ventilator until they can get to the surgery she needs in the morning. She needs all the love and support she can get, we appreciate all that you can send her way!

Happy World Down Syndrome Day from me and my favorite superhuman who keeps me happy: Jenelle! 💛💙Why is today World Down ...
03/21/2024

Happy World Down Syndrome Day from me and my favorite superhuman who keeps me happy: Jenelle! 💛💙

Why is today World Down Syndrome Day? Down syndrome is a chromosomal abnormality that gives its wielder a 3rd chromosome on their 21st pair. Hence, 3/21 - March 21st is World Down Syndrome Day!

If you haven’t had the wonderful opportunity to meet someone with this amazing superpower… keep your eyes open. Say hi. Introduce yourself. Receive a hug. Within just a few moments - you’ll realize exactly why Jenelle and those like her are some of the BEST people on the planet! Real life superhumans. With a superpower of compassion, unconditional love, and never ending support through life!

Happy World Down Syndrome Day! Now go, get after the good stuff!

Address

St. Louis, MO

Telephone

+13147049145

Website

Alerts

Be the first to know and let us send you an email when The Real Beauty & The Beard posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Business

Send a message to The Real Beauty & The Beard:

Shortcuts

Share

Category

Discovering Real Strength in Beautiful Differences

Together, Jenelle and I want to meet some truly inspiring people and hear their stories. What is the best thing to do with information you have learned? Share it with as many people as you can, of course! We intend to do just that. We cannot wait to bring our podcast to you! There are so many podcasts out there, but we couldn’t find one that highlighted the incredible stories and inspiring strength of individuals with special needs. So we decided to create one of our own! We plan to dive into all aspects of the special needs community, bringing support and guidance to families all over the world. We will shine a light on organizations that do so much good for those individuals and family with special needs. There is no one that we will not talk to! So please let us know if you know someone who’s stories needs to be heard! We are so excited, but we are more grateful that you are here to join us for this wonderful journey we have embarked on. See you more starting March 21, 2020!