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Kayleigh Is Back In The Hospital...


rmlyonsfamily
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She started having trouble breathing over the weekend and complained of extreme fatigue. I told her it was probably her Dysautonomia and part of life now. Boy do I feel bad now....

Took her to the doctor this morning after continued complaints. A chest xray revealed a good portion of her right lung was COLLAPSED!!! She was rushed to the hospital where they put a chest tube in the in the ED and we are now awaiting surgery in the morning for a permanent fix. Cardiology will be in to clear her before they will take her down to surgery.

Any other POTs/PAFs have this happen for no apparent reason???

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{ really big hugs for you and your family }

I'm not up on this, but wanted to wish you all the best.

Just in case you're feeling guilty, I told my daughter to stop pretending she couldn't breath

and get ready for school. Within a few minutes I was calling 911. It was her first episode of anaphylaxis.

And she reminded me of this for the longest time .. being a parent is never easy.

Hang in there ... D

Ps. I wonder if this will give her better clues on what.s causing her dysautonomia.

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I had my left lung pierced when they put my pacemaker in. What terrific pain! My best wishes that Kayber's surgery goes well and that's she's feeling better soon. Your family is in my prayers. Please keep us posted on how things go...

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How frightening- so sorry! I pray this is just a freak occurrence, but collapsed lungs can be associated with EDS. Once she is recovered, she needs to see a geneticist.

I'm sending good thoughts and prayers-

Julie

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Sorry, and hope she gets well soon! I have had many little collapses never had to have a tube put in thank god. Mine are involving my menstrual cycle, so I was wondering if this could be a possibly in her case also? If so, there are some rare cases of endometeriosis that can cause pheumothoraxes.

I'll be praying for her & your family.

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I'm so sorry Kayleigh is in the hospital again!

My husband had his lung collapse when he was 14. He was told it was because he was growing too fast, and his lungs got "stretched" and formed a bubble and it popped. He hasn't had anything like that happen again, so hopefully this will be an isolated event for Kayleigh.

Don't feel bad, we are moms, we are not perfect. Kayleigh will be okay.

Angelika

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My Prayer are with her and your family, if there is anyway i can help let me know!

Has she had breathing issues in the past. My major POTS symptom is shortness of breath and it's very scary. I'm investigating Pulmonary Hypertension as a cause. Please make sure they check for that. What is your location, I'll look for a expert around your area that you can contact?

Rich

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Hope the surgery went well today. So sorry you are all going thru this.

My son's friend had a lung collapse from a spontaneous hole that appeared when he was about 15. Scary at the time but he seems to be fine now and no long term effects from it.

Sending you all lots of hugs.

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My Prayer are with her and your family, if there is anyway i can help let me know!

Has she had breathing issues in the past. My major POTS symptom is shortness of breath and it's very scary. I'm investigating Pulmonary Hypertension as a cause. Please make sure they check for that. What is your location, I'll look for a expert around your area that you can contact?

Rich

If you look for pulmonary hypertension, make sure you get the heart cath. I had two ECHOS that showed I had it, but they told me that its not an accurate assesment.

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Update on Kayleigh

She had surgery on Tuesday after the initial chest tube placement didn't work. She had some complications that landed her in the ICU for 24 hours, but she's back on the floor now. Unfortunately, so far they've not been able to get her off the vacuum seal. They've tried, but the xray a few hours later continues to show that the lung isn't inflating on it's own the way it should. Tomorrow, we'll try again. Not sure what happens from there.

On the upside - she LOOKS a little better despite what her lung wants to do. She's talking in complete coherent sentences again, had her hair "fake washed" with a spray in shampoo, sat in a chair for 2 hours, and has on her own jammies today.

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Hey. I really hope Kayleigh gets better. I can understand what it is to be only a teenager suffering from it. Please tell her that she'll be in my prayers. It is not fun being in the hospital. From experience :/ But I hope that she will recovery quickly and fully.....best wishes for kayleigh, you , and the family. So sorry you guys are having to go through this.

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