Hello fellow Pierre Robians. My name is Anna and our daughter Ruby is now 9 years old. Ruby was born with severe PRS and lots of other special attributes. I think it is wonderful to have this website set up so you can all communicate and support each other. Ruby spent her first 9 months at RCH ,tracheostomy,nasogastric,CPAP ,the works. BUT!!!! now she is in Grade 3, living life to the full and even though her past is very vivid, it does get better and easier. These special little people have incredible spirit and determination and we are blessed to be their parents.(I may not have thought that 9 years ago amongst the sleepless nights) I am happy to chat/support anyone if they need it. When Ruby's plastic surgeon told us she would be like everyone else running around at school, I thought she was mad, but sure enough and thankfully she was right.
Hi Anna, Just curious to know if you had any success when you were using the CPAP? It was a night mare for us. Olivia would tolerate it for about 2 weeks then scream with it, we'd have another sleep study, lower the pressure and the cycle would start again. My husband and I would rocks, scissors, paper to see who would go in to her room and try to re settle her with the CPAP. It was like torture for all of us! After being told we would need to sedate her to get her to tolerate the CPAP we went for a second opinion- Olivia's 6th sleep study in 4 months- and it was decided that she could sleep safely without it! YAY. That happened just before Christmas for us and I tell you, it felt like the BEST Christmas present we could ever receive. It is so great that Ruby is doing well now and I am looking forward to the time when all of this is behind Olivia.
Hi Laurel, CPAP was also a diaster for us. I wouldn't like a hairdryer being blown up my nose either, I can relate to the paper/scissors/rock totally. We persevered for about 3 months as they threatened to put the trache back in. Now I feel it was taken out a little too early. Ruby and her dad now have snoring competitions!!! Best of luck to Olivia and I hope she continues to thrive, I used to think every day that passes is another day of growth, which seems to be the best medicine. Take care, Anna
Hi Guys, Thank you both for your insight. Reading your stories has helped settle some lingering doubts i have held with regard to not trying the CPAP before proceeding to jaw distraction. Balin is scheduled for Tuesday 2nd...Not long! You' ve both helped me to breathe a little easier. Talk soon.
Hello, Our son has PRS and had the jaw distraction surgery at 2 months as he had terrible trouble breathing efficiently and it was marvelous for him. Prior to the surgery we did the CPAP hell and it was very hard - he was hospitalised from birth until two weeks after the jaw distraction. He is still being tube fed as he disliked the bottle. This is tricky now as he is also eating solids. I don't know when he will be able to drink from a cup without spilling it all, but that is our next step. He is 7 1/2 months old now and will have the cleft repair at 18 months - we are counting down!
Hi guys, Thank you all so much for your well wishes. Balin's distraction was carried out on Tuesday and was a success. He unfortunately developed a lung infection in the days following and we have been battling that as well. I won't lie, it's been tough, but much of what we have experienced has been due to the infection causing issues with his airway and intubation. He is also a "mighty mouse" and has proved very difficult to sedate. The doctors and shocked and amazed at the amount of sedation he is requiring to keep him down! Go son..that's the fighting spirit!! We are hoping that things are turning around for him today after a long week. Mick and i have been doing some great work bedside and look forward to sharing some great information and real life pictures with you all. Thanks again to everyone for your emails and support. Jacinta.
Hi All,<br /> I know its a few months later, but I would like to share my experience. Brad is now 12, he had CPAP once his cleft repair was done when he was 9 months old until he was 10 years old. He took to it like a duck to water, I think he knew that it changed him completely. He went from being very lethargic and always tired to sleeping well and having energy during the day. We had difficulty when it became time to withdraw this machine from our lives as it had become a form of security for him, but like many things Santa took it and left him other special things. We had the wonderful support of the Kids hospital at Westmead and I truely believe that Brads quality of life improved because of CPAP.
WOW! This is great Wendy! Yours is the first positive story I have heard about CPAP. How often did Brad have sleep studies to monitor if he still needed the CPAP? Did he have his tonsils removed at any stage?
Hi Laurel Brad had a sleep study every twelve months to make sure the pressure was still correct and we had his machine serviced every 6 months. We use to have his sleep study done at the kids hospital westmead but because we are in a private hospital fund we went to Adventist hospital at Wahroonga and they were great. We made the decision ot withdraw CPAP becasue socially he wanted to start sleep overs with friends and he was having the occasional night off the machine so with the advice of doctors we gradually removed it permanetly. He hasnt had his tonsils removed, it has been mentioned a few times but so far so good. Brad turned 13 yesterday and while the years have been hard, to see him yesterday celebrating with his friends makes it all worth it. I hope this helps nad I would recommend CPAP to anyone.
Thanks Wendy.Happy Birthday to Brad. 13! A milestone in itself! I know each case is different, but can I ask how many obstructions Brad was having per hour when he originally went on CPAP? Did the doctor you were under at Westmead work with you at the adventist hosp? I have thought about going privately myself as sometimes I feel we get a bit lost in the crowd at Westmead. Having said that they have been great and suppportive when we see them.Thanks
