Child living with one lung...

Michele - posted on 04/27/2013 ( 9 moms have responded )

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Reaching out to other mother's who have a child living with one lung. My son was diagnosed with Infantile Firosarcoma at birth and consequently had to have a lung removed when the tumor was removed. He's now four years old and doing well. Any other Mama's out there?

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Michele - posted on 08/22/2014

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Hello everyone....I'm sorry that I'm delayed in responding to your messages. I hope that all of your children are doing well. My son is active and doing well despite having the one lung. We are just praying that he doesn't develop scoliosis due to the empty left chest cavity. Would any of you mother's be interested in a facebook support page for children/families with one lung? I have thought about creating a page. Please let me know if you're interested. I know there must be many other's out there!

Michele - posted on 08/22/2014

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Hello everyone! I'm very delayed with reading these messages. I hope all of the children mentioned above are doing well. My son starts kindergarten next week and has been doing well with only the one lung. He's very active but we are hoping that he doesn't develop any spinal issues due to the empty chest. Are any of you mother's on FB? I'm not very good about checking this site. I thought maybe we could start up a small online/FB support group for children/families with one lung? If any of you are interested, please let me know and I'll create a page. Michele

Lori - posted on 03/22/2014

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My daughter takes Flovent, Singular, and Albuterol- all are asthma medications. The Flovent and Singular she was put on at 2 years old and they strengthen her lung and the albuterol is if she has trouble breathing when she gets a cold, she has been on that since 6 months old. When she was 6 months old she got a lung infection and had a very hard time catching her breath but with antibiotic she got better and has not had any infections since.
I understand how your feeling. Doctors know so little in my daughters case and don't offer much information about what to expect because they just don't know.

Nurul - posted on 03/18/2014

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what type of medication? since when she took it? how is your daughter when she was a baby. is she has any problem with her breathing?
2 days ago, there are some problem with the machine so we have to switch it off. my daughter can breath normally without the machine support approx 2 hours and her oxygen level is good when we brought her to the hospital. sorry for asking too many question :)

Lori - posted on 03/10/2014

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My daughter has not needed anything to help her breath. She currently takes 2 medications to strengthen her lung. Please ask anything, I'd love to help & wish I had more support when my 2 year old was a baby.

Nurul - posted on 03/10/2014

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my baby was born with one lung, she is 3 months old now. she is on bipap machine for the whole time. hoping the best for my baby. is your baby use any machine to support his breathing?

Lori - posted on 03/08/2014

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My daughter is 2 yrs old and born with no left lung & no left pulmonary artery. She is just starting to show changes in her heart & goes for a CAT scan this week under general anesthesia. We are very nervous!

Stephanie - posted on 11/23/2013

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Have you found any support with other moms of children who have only one lung? Our son only has his right pulmonary artery, therefore, only his right lung provides oxygen to his body. He's turning 7 in the new year- and have yet to meet any other families with a child of similar condition.

♫ Shawnn ♪♫♫ - posted on 04/29/2013

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Oh my, Michele!

I don't have one with your son's condition, but do have one with medical issues.

You have my (albeit invisible) support, and {{HUGS}}! I'm glad your little guy is doing well, and I hope that he continues do do so! Great job so far, mom and LO!

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