Pulmonary contusion and ARDS from trauma in teenager. Recovery ??

Posted by bassman @bassman, Nov 18, 2017

My 16 year old was hit by a car 6 months ago. She was on life support for abt 2 weeks and spent 8 weeks under medical care. She sustained broken bones head to toe. She had aspirated and developed ARDS and also had pulmonary contusion and had both lungs collapse while on vent. She is a miracle and is back at school part time 4 months later. She still needs some surgeries for fractures in her ears and she lost all her top front teeth. All other broken femur and arm and skull fracture and facial fractures have healed. She is a miracle. However her lung recovery is something we can’t quit figure out. Pulmonologist says her last X-ray looks 100% normal. A pulmonary stress test does show pulmonary issues. She was in great physical shape and trained 6 days a week for her sport which was basketball year round since 5th grade. Her physical condition is one of the reason she survived. It’s is now six months after the accIdent and she can lift weights and train but nothing with conditioning or she has no oxygen reserves. Finding research on teenagers recovery with ARDS is almost non existent. She was improving at a steady rate and was able to do more and more. Started to basketball train again but has hit a wall and plateau for abt 2 months with no visible gains. Still can easily get out of breath. Though to someone who wouldn’t know her you couldn’t tell. Is leveling off normal? And should we see improvement again? Since she is young will she heal over time? No significant cough, no bringing up phlegm, just shortness of breath when she tries to do too much. She weight trains for an hour 2x per week. Her oxygen level always stays in 90s. When we push to hard and try some conditioning it sometimes will drop high 80s but recoveries within seconds after she stops. Within seconds (like 15) she is fully recovered w heart rate and oxygen back in mid to high 90s. Is that a positive sign? Or could she have long term irreversible damage. Accident was 6 months ago. In rehab she would get out off breath sitting up in bed and trying to stand to go to bathroom. She wasn’t able to walk down hallway very far without wheelchair behind her. Now she can hit layups and shot 3s and take stairs easily. So we have seen great improvements should we expect more. Pulmonologist didn’t want to do scan yet because she has been exposed to so much radiation as long as she was improving he felt we were heading in right direction. Sending us to Children’s Hospital in Rochester Ny (Strong) for help. Since it is a miracle she survived such injuries (car was going 40mph) she was walking our dog and she recovered at a rate that astonished the medical community it is hard to find research or baseline information on recovery. That is what our pulmonologist is struggling with. There are not many survivors like my daughter. I read you still produce new alveoli sacs until you are 25 yrs old. Is six months still early in her recovery to totally figure it all out since she is young.

Interested in more discussions like this? Go to the Lung Health Support Group.

Heading to Boston's Childrens Hospital tomorrow. Meeting with doctor that runs their lung disease program. No answers yet. Hoping it is a positve meeting

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@bassman

Heading to Boston's Childrens Hospital tomorrow. Meeting with doctor that runs their lung disease program. No answers yet. Hoping it is a positve meeting

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@bassman,Hi Sheri. How did your visit go at to improve your daughter's BSH? Were they able to put together a good plan to help your daughter?

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@colleenyoung

Hi Sheri @bassman, I was thinking about you and your daughter today. How is she doing?

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We have had two trips to Bostons Childrens Hospital. We were there yesterday. We had a CT Scan done and two test to check her heart for pulmonary hypertension and blood work and lung function testing. Her heart is great and no issues. She is starting to show some improvement in her lung function testing but her FVC is 58% (improved from 40%) FEV1 is 37% (improved from 29%) and FEV1/FVC is 68%. This are improvements from 7 months ago. This is with no treament except a low dose steroid inhaler one in the morning that we started about 2 months ago. Her CT Scan show severe inflammation of the small airways but no scarring. Pretty much all encompassing in both lungs. They and the pulmonologist from Albany have never ever seen this develop or happen from trauma. They are perplexed by her case. They have put her on a stronger inhaler Flovent 110 HFA two puff morning and two puffs at night. Then the first week in January they are going to have her be in the hospital for 3 days and have a high dose of steroid intravenously. They want to monitor for those 3 days to make sure she isn't having any major issues and then we wait a month and come back for another round of lung testing and see if we have improvements. They feel 7 months for the amount of trauma she went thru that it is still early in the healing process. However, once again they have never seen this happen in a trauma case and arent sure why it has happened. I was having Madison do Frequency Micro-current therapy (FMS) non needle acupuncture therapy. Dr in Boston said stop. I also was going to look into the Wei Institute. Do you have any information or background on any of these therapies. Drs seem very anti holistic and I heard the Mayo clinic embraces both. I just ordered a natural supplement for internal anti inflammation called CUR-Q10® ULTRA Curcumin CoQ10 . Any experience with this product. She went to her varsity basketball practice tonight and actually was able to participate full court. They coach text me and said she couldn't believe she did the whole practice. Madison said she had to stop once and I am sure she wasn't going full speed like she use to. She still gets breathless pretty easy but she is an athlete. Her oxygen levels are good. They did a sleep test and she maintains her oxygen in the mid to high 90s while she sleeps. Any suggestions or feedback? It us just interesting that the # 3 pediatric pulmonology hospital in the country has never experienced this scenario before. The doctor called me three times today. They are really rallying around her and trying to come up with the best plan. I just would think some Doctor out there has had to see this before. They are also going to put her on an antibiotic that has anti inflammatory side effect, Azithromycin 3X per week to see if that makes a difference. Interesting note. She had a headache and I gave her two Motrin on the way to practice. Then I read that Mortin can have anti inflammatory features. Maybe that is why she felt like she could do more at practice????

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@bassman

Heading to Boston's Childrens Hospital tomorrow. Meeting with doctor that runs their lung disease program. No answers yet. Hoping it is a positve meeting

Jump to this post

Thank you for asking. I just posted an update in regards to our two trips to BCHs to Colleen Young.

REPLY
@bassman

Heading to Boston's Childrens Hospital tomorrow. Meeting with doctor that runs their lung disease program. No answers yet. Hoping it is a positve meeting

Jump to this post

We have had two trips to Bostons Childrens Hospital. We were there yesterday. We had a CT Scan done and two test to check her heart for pulmonary hypertension and blood work and lung function testing. Her heart is great and no issues. She is starting to show some improvement in her lung function testing but her FVC is 58% (improved from 40%) FEV1 is 37% (improved from 29%) and FEV1/FVC is 68%. This are improvements from 7 months ago. This is with no treament except a low dose steroid inhaler one in the morning that we started about 2 months ago. Her CT Scan show severe inflammation of the small airways but no scarring. Pretty much all encompassing in both lungs. They and the pulmonologist from Albany have never ever seen this develop or happen from trauma. They are perplexed by her case. They have put her on a stronger inhaler Flovent 110 HFA two puff morning and two puffs at night. Then the first week in January they are going to have her be in the hospital for 3 days and have a high dose of steroid intravenously. They want to monitor for those 3 days to make sure she isn’t having any major issues and then we wait a month and come back for another round of lung testing and see if we have improvements. They feel 7 months for the amount of trauma she went thru that it is still early in the healing process. However, once again they have never seen this happen in a trauma case and arent sure why it has happened. I was having Madison do Frequency Micro-current therapy (FMS) non needle acupuncture therapy. Dr in Boston said stop. I also was going to look into the Wei Institute. Do you have any information or background on any of these therapies. Drs seem very anti holistic and I heard the Mayo clinic embraces both. I just ordered a natural supplement for internal anti inflammation called CUR-Q10® ULTRA Curcumin CoQ10 . Any experience with this product. She went to her varsity basketball practice tonight and actually was able to participate full court. They coach text me and said she couldn’t believe she did the whole practice. Madison said she had to stop once and I am sure she wasn’t going full speed like she use to. She still gets breathless pretty easy but she is an athlete. Her oxygen levels are good. They did a sleep test and she maintains her oxygen in the mid to high 90s while she sleeps. Any suggestions or feedback? It us just interesting that the # 3 pediatric pulmonology hospital in the country has never experienced this scenario before. The doctor called me three times today. They are really rallying around her and trying to come up with the best plan. I just would think some Doctor out there has had to see this before. They are also going to put her on an antibiotic that has anti inflammatory side effect, Azithromycin 3X per week to see if that makes a difference. Interesting note. She had a headache and I gave her two Motrin on the way to practice. Then I read that Mortin can have anti inflammatory features. Maybe that is why she felt like she could do more at practice????

REPLY
@bassman

Heading to Boston's Childrens Hospital tomorrow. Meeting with doctor that runs their lung disease program. No answers yet. Hoping it is a positve meeting

Jump to this post

Dear Bassman & family:
My heart and prayers go out to you and your lovely daughter.
I believe there is hope and want to
share my experience.
I am only shari gh this and not suggesting cancer is in your radar by any means.

I was shockingly diagnosed with lung cancer after having a cough, periods of shortness of breath, and shoulder pain for two years and local doctors thought I looked good, and would do no further testing.

Thank goodness your have some answers.

Mayo Clinic doctors and teams found a 3cm tumor and life saving surgery was performed to remove most of my left lung.

I could not breath due to the shock and fear and missing lung! My primary Doctor
introduced me to Dr Amit Sood and his paced breathing study! My life snagged in three months!

Dr Amit Sood helped me connect my mind and body with simple deep breathing and a workbook. My breathing was guided by
a voice that told my mind and body how to relax and incision healing. The workbook is now a book called Happiness and another is Stress FreeLiving.

You may also watch Dr Amit Sood TedX talk on YouTube. He is remarkable!

Think about getting your family involved to support your daughter as you find a new way to breath through this difficult time.

Let’s stay connected

All my best
linda

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I am so happy, that they found the reason, and were able to help you.
It reminds me about myself. I was healthy, happy and had only slight headaches. And that was till I was in my sixties. Then the local doctor found one of my main blood vessels in my head, was getting too much pressure, and ready to burst. This was found out from an angiogram. I underwent an emergency open brain surgery in a famous LA hospital and they ablated the fistula and told me and my husband, how lucky I was.
But I was never the same. Headaches, weight loss, no appetite, constant stomach problems and not feeling right after two o!clock every afternoon.
Doctors locally checked with CT, MRI and blood tests and found nothing they said. They also stated, that I looked well and did not know, what the
problem is. I like to add, that as soon as I lye down, it gets better. So I spend a lot of afternoons and evenings in bed! I also have a lot of fluid coming out of one of my nostrils, when I am up.

What my problem is, that I look well and the docs do not see me, when I am in pain. They only gave me pain pills, which I am now getting myself off
from. Never took pills, and was always healthy and positiv in nature. Has anybody gone thru something like that?
Would it be wise to travel to the Mayo Clinic in Arizona?

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