courtnee's mom
07-28-2006, 10:12 PM
So sorry this is long overdue..............
Hi y'all. My name is Cathy Cox. We live in Tulsa,OK. My daughter is Courtnee. She is 5 yrs old. She has Down's. She was born with 3 holes in her heart. She has had 2 open heart surgeries. The first one was 9-01 to patch the holes. Then she got pneumonia & wasnt recovering. The doctor's reassessed her & figured out that the patches were leaking and had to patch the patches 10-01. He was too weak to drink from a bottle so they put her feeding tube in 8-01 along with her fundo (which never worked, we had it redone last Sept.) She has had numerous bronch's (too many to count) eventually her airway closed up with scar tissue. The doctor here in OK told us she would have her trach for the rest of her life & gave up on her. In the meantime she was pulling it out and coding. One time she did it while I was driving down the highway in the middle of rush hour traffic!!!! By the time I got pulled over and got back to her, she was blue & not breathing. I put it back in real quick & ambu'd her w/oxygen and brought her back. That was the last time I drove alone with her. We eventually found a wonderful ENT in Houston that did a trach resection on her. (He cut out the scar tissue and sewed the esophagus back together). She finally had an airway!!!! But her airway has been narrowing again lately. Their is a new ENT here in town that our pulmo dr sent us to. He did a bronch & said she was Grade 3 (90% occluded) Subglottic Stenosis. We have been having some aspiration issues (everything she eats or drinks goes directly to her lungs) Her epliglottis is not developed. She has been having some speech therapy to try to strengthen this. But it is very slow going. Our ENT in Houston said that when her aspiration issues are resolved, then she will be a candidate for LTP surgery and then eventually decanned. So we are looking at maybe another 2 yrs http://www.tracheostomy.com/iB_html/non-cgi/emoticons/sad.gif We have been trying for the last 3 yrs to get this thing out, what is another 2 huh http://www.tracheostomy.com/iB_html/non-cgi/emoticons/confused.gif I work days at her pediatrician's office (It has been really convenient when I need to take time off to be with her in the hospital or on one of our trips to Houston) and my husband works nites. It has been really hard for us and has taken a toll on our marriage. The best thing about all of this is that she doesnt know any better. She is so used to all the breathing treatments, suctioning, etc. She is just so loving and is my little http://www.tracheostomy.com/iB_html/non-cgi/emoticons/angel.gif . Im so sorry it took me so long to post this. I have tried one other time to post it and got kicked off the internet & lost it all. You all have been so helpful & supportive. I was feeling lost & alone, but I am in awe of how many other people are out there in the same boat. You all are very special to me. Thank you so much for all of your support. I am so glad I found this board. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Cathy
Hi y'all. My name is Cathy Cox. We live in Tulsa,OK. My daughter is Courtnee. She is 5 yrs old. She has Down's. She was born with 3 holes in her heart. She has had 2 open heart surgeries. The first one was 9-01 to patch the holes. Then she got pneumonia & wasnt recovering. The doctor's reassessed her & figured out that the patches were leaking and had to patch the patches 10-01. He was too weak to drink from a bottle so they put her feeding tube in 8-01 along with her fundo (which never worked, we had it redone last Sept.) She has had numerous bronch's (too many to count) eventually her airway closed up with scar tissue. The doctor here in OK told us she would have her trach for the rest of her life & gave up on her. In the meantime she was pulling it out and coding. One time she did it while I was driving down the highway in the middle of rush hour traffic!!!! By the time I got pulled over and got back to her, she was blue & not breathing. I put it back in real quick & ambu'd her w/oxygen and brought her back. That was the last time I drove alone with her. We eventually found a wonderful ENT in Houston that did a trach resection on her. (He cut out the scar tissue and sewed the esophagus back together). She finally had an airway!!!! But her airway has been narrowing again lately. Their is a new ENT here in town that our pulmo dr sent us to. He did a bronch & said she was Grade 3 (90% occluded) Subglottic Stenosis. We have been having some aspiration issues (everything she eats or drinks goes directly to her lungs) Her epliglottis is not developed. She has been having some speech therapy to try to strengthen this. But it is very slow going. Our ENT in Houston said that when her aspiration issues are resolved, then she will be a candidate for LTP surgery and then eventually decanned. So we are looking at maybe another 2 yrs http://www.tracheostomy.com/iB_html/non-cgi/emoticons/sad.gif We have been trying for the last 3 yrs to get this thing out, what is another 2 huh http://www.tracheostomy.com/iB_html/non-cgi/emoticons/confused.gif I work days at her pediatrician's office (It has been really convenient when I need to take time off to be with her in the hospital or on one of our trips to Houston) and my husband works nites. It has been really hard for us and has taken a toll on our marriage. The best thing about all of this is that she doesnt know any better. She is so used to all the breathing treatments, suctioning, etc. She is just so loving and is my little http://www.tracheostomy.com/iB_html/non-cgi/emoticons/angel.gif . Im so sorry it took me so long to post this. I have tried one other time to post it and got kicked off the internet & lost it all. You all have been so helpful & supportive. I was feeling lost & alone, but I am in awe of how many other people are out there in the same boat. You all are very special to me. Thank you so much for all of your support. I am so glad I found this board. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Cathy