[nonnysmom]

I'm new, came across this site looking for info on trachea malasia and bronchial malasia.

I have a four year old child with multiple things I won't list, because each thing probably should be posted in a different place.

Her main issues are currently and give us the problem the most are chronic lung disease, left lung only has two lobes, the trachea malasia and bronchia malasia and severe congenital scoliosis that is worsening the left lung because it is smashed into her rib cage.

She is scheduled for a very invasive but life saving procedure in Texas at the end of July for the scoliosis and to expand the chest wall and allow that lung room. Those surgeons would like for us to take care of her bronchia malasia issues prior to surgery. My pulmonary docs have told me for years this is something that will clear up on it's own with age. Okay she is four and it's the same as when we was an infant. I don't want to get to Texas and have her unable to come off the ventilator for these malasia issues.

Any advise is greatly appreiciate. I found out about our upcoming surgery on a board. The wealth of knowledge is priceless.

[scrubs70]

Welcome to allnurses , my heart goes out to you.

[Tx-top nurse]

welcome to allnurses, hope things turn out for the best...
keep the faith and follow your heart and first mind.

[nonnysmom]

Thank you scrubs 70 and tx-top nurse. We need all the prayers we can get. It's been a long road to even be on a surgical schedule. Tx-top nurse are you in San Antonio? That's where the procedure will be. Would like your thoughts on the children's facility there.

I'm going to look into the Cincinnati children's facilty. I saw a thread of a physician there who is a great ENT. Anything besides just waiting. I hate for her to have procedures but also hate for her to suffer, you know? The surgery in Tx will be out 5th. And as I stated I didn't go into detail about the other problems, in total there are 14 doctors. This from an "uncomplicated pregnancy". No one understands why she is as sick as she is. But it doesn't matter, she is now four and still my miracle child.

[Tx-top nurse]

Your welcome. No I'm not in San Antonio I am in Houston...
Just wondering have you talked to anyone at Texas Childrens Hospital in the Houston Medical Center? They have some of the best doctors here, and I am sure you will be very pleased to at least get the information your searching for.. Blessed Recovery.

[nonnysmom]

No I haven't spoken to anyone in Houston, I saw a post about Dr. Cotton in Cincinnati and have emailed him. I'm willing to go anywhere for whatever is best for my daughter. I know we have good docs in California but my experience has been they want to wait and see. My child can't wait she doesn't have use of her left lung whatsoever and that happened because of waiting. We have been waiting for the trachea and bronchia malasia to cure itself and it hasn't happened. I feel this needs to be addressed by an "expert" prior to her surgical procedure in July so that's why I'm pushing. If I have any luck I will keep you posted. Thank you so much for the good wishes and prayers. My baby has been through so much and she is the bravest child I know.

Originally Posted by Tx-top nurse

Your welcome. No I'm not in San Antonio I am in Houston...
Just wondering have you talked to anyone at Texas Childrens Hospital in the Houston Medical Center? They have some of the best doctors here, and I am sure you will be very pleased to at least get the information your searching for.. Blessed Recovery.

[apontius]

God bless you and your angel. Sorry I couldn't be of any help from Mississippi. Keep us posted