United Brachial Plexus Network, Inc.

My daughter Kayla has a paralyzed right diaphragm. When she was undergoing her first surgery for the BPI the doctor cut her phrenic nerve. The doctor didn't admit to it in time so it was not able to get repaired. She has since had three plications of the diaphragm to pull it down so she gets air in her lungs for a short time. We had to do this to get her over being sick. She had a flouroscopy to diagnosed this and we continue to do them to watch for changes.

She used to get oxygen at night and for several years she slept in an iron lung machine (what they used for polo patients, it does all the breathing for you). She is now 9 yrs. old and no longer uses it. She will NEVER be able to play sports and even swimming wears her out quickly. Also, extreme heat and walking takes a toll on her. The positive thing is that the older she has gotten the least amount of time we spend actually in the hospital with lung problems. She will always have to be careful and at the slightest cough she will usually start an antibiotic untherwise we end up in the hospital. Please feel free to e-mail me if you have any other questions.
Angie

WOW...Thank you all so much for the responses.I see that it has helped a lot of people to discuss this and other areas of concearn pertaining to this topic.
I dont think my daughter will have phrenic nerve damage.She just seems grunty when breathing, but that is it.It has been there since they returned her to me after birth.(no she was not breathing at first)I will keep all of you in my prayers that you and yours improve where needed.
Tress

thanks kath for the info. Tress, Gabby does the grunting noise to especially when we hold her we have noticed this, we also noticed that she does tire out very quickly. We go back to see her pulmonologistin august for a check up. Hope all this info helps you,if ya have anymore questions you can email me.
shelly

BUMPING UP FOR anotherbpimom.

Carolyn J