Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 Hi Jeanne, so sorry to hear the news about Caitlyn. I think she is very lucky to have such a PERSEVERING MOTHER!!! Hang in there. Sometimes I think it is harder to watch what our kids are having to deal with, they seem to roll with the flow. Caitlyn sounds like she has a great attitude, and you can pat yourself on the back for that!! We will keep her in our prayers. - Celeste - nne 15 Jeanne McMullen wrote: > > > To Maureen and others > > For those of you who recommended or were aware that I was seeking a second > opinion from Dr. Bove at the Univ of MI on Caitlyn's pulmonary > atresia we heard back last week. > > Dr. Bove agreed with the docs here in Pgh that there isn't much they can do > to improve her severe stenosis in the branched pulmonary arteries. When her > condition deteriorates and she forces their hand, Dr. Bove agreed that > balloon angioplasty with stents will be their only choice but that there > will be a lot of tearing in these fragile tiny arteries and that this won't > help much. Given that they can't improve her blood flow to her lungs, they > can't fix the VSD or give her a valve either. > > I'm very disappointed. On the flip side, our cardiologist finally agreed to > see if Caitlyn would do better on oxygen. However, he prescribed Liquid > Oxygen which is a lot more dangerous than regular oxygen though it is purer > and I guess that was his reasoning. I am terrified of an accident. Has > anyone else used LOX in the home? > > Someone on the list mentioned that their son walks over to the oxygen > whenever he feels he needs help, if you're still on the list, please email > me--I'm curious as to how much time on the oxygen your son needs when he's > winded. Just 10 min? longer? Just curious. > > Caitlyn is amazing. To get her used to the mask I told her we were going to > play fireman. I also told her she couldn't watch her Barney video if she > didn't play fireman. She did well on it yesterday but wanted no parts of it > today. Out of desperation I told her that it was medicine and that Dr. > E------ said she had to have it and that it would make her feel better. She > said, " Just like my breathing treatment? " I said yes. She said " Dr. > E------ loves me. " I said yes. So guess what--no more arguments, she did > it! My poor girl has suffered through eyeglasses since 24 mos. patching for > 2 years, eyedrops which sting, breathing treatments, countless meds, and now > an oxygen mask. And she tolerates it! Which is worse, CHARGE or a > persevering mother? > > Jeanne > > _______________________________________________________________ > Get Free Email and Do More On The Web. Visit http://www.msn.com > > ------------------------------------------------------------------------ > Always wanted to set up a book club, but can't find the time? > http://www.onelist.com > Create an online book club through ONElist. > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
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