Camille Nye

TrachKid Profile

Camille Elna Nye

Hello, there!

I wanted to thank you so very much for starting this website - I can't begin to tell you how much the information you provide here has helped us, especially in the beginning of the journey we embarked on two years ago with our daughter, Camille.

She was born on July 26, 2001, 7 lbs - 6 ozs, 18" long, full term (5 days late) after a very healthy, fit, first pregnancy. I had to have an unplanned C-Section and this went very smoothly. When they delivered her, however, instead of a loud, long wail, she gave shallow, short cries. They took her away immediately after giving me a quick peek around the C-section screen. After a few hours I was told she had a collapsed lung. Shortly after she was sent down to Boston Children's Hospital via ambulance with my husband, where she had an MRI and CT scan. This is how we found that instead of a collapsed lung (that wasn't the case), she had bilateral vocal cord paralysis - as well as an encephelocele about the size of a nickel on the back of her neck and some brain abnormalities. The strange crying had been stridor.

When I was finally discharged from the hospital 3 days later, I was able to get a ride from a good friend down to Boston to meet up with my husband and see, REALLY see, my baby girl for the first time. I had been pumping milk and the hospital had been sending it down to Boston daily for me. When I arrived, I was shocked at the number of leads, monitors and tubes in and on my little baby. My husband had kept me updated via phone while I was still in the hospital but due to mild pain killers needed for the C-section, very little of his information on her condition was truly sinking in. Camille had been intubated so that she could breathe easily and despite the equipment and activity all around her she seemed rather restful. I actually got to hold her for the first time, she was 4 days old. The next day we tried nursing and she took to it immediately; I was so grateful that the first few days of not nursing directly from me did not confuse her.

After several discussions with the ENT that was caring for her, we were advised that a trach was our only option if we wanted to bring her home. I was devastated, recalling the few elderly people I've seen who had trachs and the sounds they made and the way they talked with an electronic voice box. I couldn't picture this with my little baby girl!! We met with a trach specialist who gave us more details on what was involved in care, nursing, oxygen (for emergencies), etc, it was all so overwhelming. All I wanted to do was to take Camille home and so we agreed that this would be the best thing for her. She was trached on August 2 - she was 1 week old.

It turned out that the encephelocele never had any brain matter nor fluid in it so they said it would be safe for us to have removed when we were ready. Her MRI's showed that her brain stem and cerebellum were approximately 25% smaller in size compared to the rest of her brain, so her balance and coordination could be affected down the road. This is also why they believe that the vocal cords are paralyzed, since the nerves going to them from the brain stem were not as "strong" as those to her vision, hearing, etc., these things which are fine. Also, her corpus callosum (part of her brain connecting the left and right hemispheres) had not fully fused as of the first MRI and that was a concern. When she was 2 weeks old I got to see her face for the first time without any tape or tubes going into her nose. She was the sweetest little thing I'd ever seen, and she was mine!

After a few weeks of Camille adjusting to her new airway and us learning trach care and emergency readiness, we were discharged from BCH and sent home with all of the necessary equipment. We were able to get daily nursing during the work week so that my husband and I could go back to work after my leave was over and we knew that Camille would be in good hands. The two nurses who have worked on our case from the beginning have since become a part of our family and we value them to no end.

It's been two years now, and through early intervention, Camille is truly thriving. We rarely have to suction her and she is now speaking single words at a time with a Shiley valve. We were able to get rid of the sat monitor when she was 7 months old as she never had any low oxygen issues and it would go off when she became more active. We now only have a suction machine and emergency oxygen tank (never used) at our home, along with regular trach care items.

Her intelligence level and learning ability have not been hampered by her brain issues, thankfully, and she is doing very well with both speech and physical therapy. She herself can sign about 7 signs and she comprehends about 30 different signs - she enjoys it when we communicate with her that way. She is still not walking on her own yet but does very well with a small orthopedic walker that she has mastered. She is cruising but not crawling (we were always afraid to put her on her tummy as an infant due to fear of her blocking the trach opening...so we feel at fault for her lack of interest in learning to crawl).

The best news of all (so far!) is that we have an appointment with Dr. Robin Cotton at Cincinnati Children's Hospital on Sept. 4 & 5 for tests, and if those go well, he will schedule us for surgery shortly thereafter. I am sure you have read about him in stories that other people have submitted to this website, I know I have!! Apparently he is the "king of vocal cord surgery" and has had a large amount of successful decannulations after surgery. We are hoping and praying that he will find the same success with our Camille.

Update, September 9, 2003 - Our Cincinnati appointment went better then we ever would have believed - Camille passed her FEES and bronchoscopy with flying colors and we are scheduled to go back for surgery on October 6, just 4 days before our 4th wedding anniversary! Dr. Cotton said that Camille had the smallest airway opening he'd seen with cords that are paralyzed in the closed position... he is looking to tie back one cord and he may have to remove a small amount of subglottic tissue that appears to be thicker than usual, but he said that isn't anything to be worried about as he will make sure that her airway will be sufficient. After our October 6 appointment, if all goes well, we are scheduled to go back on November 12 for another scope; IF necessary we have the OR scheduled on November 14 in case Dr Cotton feels they should perform the laterilization on both sides as well.

Both my husband and I feel that if anyone can help Camille with surgery, it's Dr. Cotton and his team. His resume is outstanding and his reputation is second to none - I SO am glad that I took the advice of many other parents from tracheostomy.com who encouraged me to seek Dr Cotton for a second opinion.

I also got to meet up with Cory Izzo, another mom from tracheostomy.com whom I'd been emailing back and forth with for a little while now - it was great to put a face with the emails! Unfortunately our meeting was brief and we did not get together again before we left, but we wish the best for her son Parker and hope that all will work out well for him, too!

Update, October 6, 2003 - This morning at 9:30am Camille had her vocal cord surgery with Dr Cotton and his team. It was very successful!! They tied back one side and also removed one of her adenoids. At this point, they do not feel a second surgery will be necessary to do the same to the other side but we will know for sure when we go back on Nov 12 for a follow-up scope to check and see how things are healing and to check for a sufficient airway. We have the OR reserved on Nov 14, just in case they do need to do the second surgery.

Camille is 37" tall and weighs 37 lbs... the pictures below were taken the day after, when she finally woke up from a 36 hour nap!

Update November 2003: After a scope with Dr Cotton, he determined that Camille does indeed need the second surgery. On Nov 14th he and his team successfully performed a CO2 laser cordotomy of her right vocal cord, and left vocal cord laterelazation as well as inserting a stent above her trach, which will be removed during another visit there on Dec 3. Then we are scheduled to go back on Dec 19 for a check-up. They also upsized her trach to a 4.0 while the stent is in place but they are planning on going back down to a 3.5 during our visit on the 3rd.

Since we've been home she's been doing pretty well, although she's developed quite a cough that seems to pester her when she is sleeping, both during the night and her daytime nap. But she has bounced back in every other way rather quickly, and aside from her appetite being at about half-mast she is almost her normal smiling, cheerful, loving self.

I also want to give the people at Miracle Flights for Kids special thanks and our most heart-felt gratitude, for without them our trips to Cincinnati might have been put on hold for a very long time. If anyone needs medical transportation for your child to a facility beyond reasonable driving range, please give them a call. Visit miracleflights.org , or you can email flightcoordinator@miracleflights.org for more information. They are amazing, resourceful people and will do all they can to assist you. They are truly angels in every way.

Update December 3, 2003 - The stent was removed today, Dr Cotton felt that her airway looked good and we would try the downsizing and capping/sleep study on the next trip out. He did want to wait until January, though, so we cancelled the trip out on the 19th. He did put a 3.5 back in her and we will go down to a 3.0 for the sleep study.

Update January 9, 2004 - Dr Cotton did an LMB and even though her airway shows no scar tissue buildup nor granulars, he did notice that her airway was rather swollen and prescribed some steroids to take care of that. However, this means no sleep study for this trip, he felt the results would be more true if the airway were normal. We will come back in a month to try again. It was disappointing; it's been a long 2 1/2 years but before we know it the month will be up and we will be flying out again. Nothing but positive thoughts...

March 4, 2004 - Went to see Dr. Cotton for the sleep study and 48 hour capping trial. The first night went rather well with the cap on day and night and late the second night they came for her after 9pm to get her ready for the sleep study. Be forewarned - preparing for the sleep study is agony to go through for both you (emotionally) and your child (physically); but once the leads are on and the glue in the hair has dried and they are sleeping, it's well worth it! They started putting her leads on at 9pm and finished after 10:15pm. Camille awoke several times during the night and pulled off the face "mask" used to monitor her breath during slumber and it had to be reaffixed each time, sending her into an unbelievable fit of rage. But after getting a good straight 5 hours of sleep, it was over and turns out that she did very well, all things considered. I hope we never have to do that again but I must say that in the end it was worth it. We are going home with her trach capped for her awake hours only for one month, then go back in April for another scope and possibly a trial decannulation.

April 5, 2004 - Camille's first month of being capped at home flew by and before we knew it we are back in Cincinnati. She was supposed to be capped the first night after her scope so they could see how she did sleeping and then the next morning we would pull the trach. She did not sleep well at all, fussed and kept pulling the cap off all night long. The next morning the report to Dr. Cotton was not favorable so he decided to try it one more night. She slept much better the second night, a good 5 hours straight before being up for 4 hours and then sleeping another two without problems of keeping it capped throughout. But when they did rounds the next morning, however, they noted some stridor in her breathing and decided that decannulation would not be the best thing for her now. They felt she needed some more time and keep telling us that "we are so very close to being trach-free". Dr Diego (one of the fellows) did fenestrate her trach and sent us home with it capped. Once home, however, Camille struggled to breathe easily and did not seem comfortable with the cap on or off, so we knew something was up.

She was working very hard when being physically active and during quiet play. When she decannulated herself two days after being home, we noticed that the fenestrated trach was not smooth; the edges where the hole had been cut were very rough and was probably really irritating the back of her throat. We changed the trach to a regular 3.0 and contacted Dr Cotton's office right away so that it was noted in her file. What a difference that made in her mood and her comfort level! We are supposed to go back on May 10 for another scope and to remove some scar tissue they discovered that might not be helping our cause.

We will give her all the time she needs, but are hoping and praying that she will be trach-free for her 3rd birthday party at the end of July. We are SO CLOSE...

August 16, 2003 – Camille was decannulated today - she sat up in her bed at Cincinnati Children’s and smiled…each time I asked if she could breathe all right she signed yes. What an indescribable relief!! Going back home in two days and have an appointment to come back in a month for a checkup…she has also started a summer preschool program in town, she even gets to take the bus to school and her independence is growing every day.

September 12, 2004 – Our first appointment back in OH and the news isn’t so great; they have to reinsert the trach until they can do one more surgery. She has great O2 sats but she seems to be struggling more these days to breathe. We go back in a few weeks for surgery.

October 8, 2004 – the operation went well, the team is pleased and think that this should be it. We shall see…going back in a month.

November 10, 2004 – once again, decannulation went well! The pictures of her airway were very clean and showed no scarring, so we will take her home and come back next month…

January 3, 2005 – the LMB results were very positive, Dr Cotton said we can come back in 6 months for the next checkup! We also have to say goodbye to our nurses who have been with us for so long and have become like family. Thank you for everything, Ken and Carmen!

Camille will be 4 this summer and hopefully her stoma will be closed by that time. It’s getting noticeably smaller and fewer secretions are coming through. The whistling sounds are also gone, and she is vocalizing much more. Her favorite things to say are “mama”, “Isaac” (her dog), ”five”, “I got it”, “yeah”, “star”, “oh boy” and “OK”.

We are teaching her to use her voice more now and not rely on signs as much. She is also learning to use her “strong” voice – to try and push the air out from her diaphragm and make a more pronounced, efficient sound, this produces the best results with “mama”.

Camille and I wish all of you parents out there with children on this website the best of luck – never stop praying, and remember that these little wonders of ours are full of surprises. You are their rock; they will gain strength and energy through you, from you. Never give up.

Pamela Nye
Fremont, NH

pnye@bottomline.com