Hi All, Olivia had her cleft repair 5 weeks ago. All in all it was not the worst hospital experience we have had together. Definitely the sleep studies are much, much worse!!! At least post surgery there were plenty of pain killers to keep her comfortable.The staff at the childrens hospital Westmead were fabulous, especially the night staff. The arm restraints we were required to use for 2 weeks after the surgery were not that bad either. Actually pretty good at the park as Olivia could play in the dirt, sand , bark chips etc and not put anything in her mouth. The restraints did not stop her from crawling, pulling up or playing. She was happy enough. She is now back to her usual feeding habits with a lot less/ actually no, sneezing and things flying out her nose. The only problem we are having is her night sleeping. It is hard to know whether it is a developmental thing, teeth, enjoying all the attention during her recovery and wanting it to continue??? (She seems to be able to go straight back to sleep when I am holding her???) OR my worst fear that the dreaded sleep apnoea has re- appeared- Olivia grew out of it at 4 months. Has anyone else experienced this post palate repair?Am I expecting her to be back to her self too soon?
Hiya, Sounds like you had a great run post surgery. I especially love the thought of Olivia playing in the dirt with her splints on...thanks for the giggle. Balin had a rough time post surgery with infection etc, so our experience was a little skewed. He took to eating straight off the bat. I seem to remember Balin having trouble sleeping at first once home post op. I think that being in hospital throws their routine right out and they need some time to re-adjust again. Balin is still in hospital at present (1 month and counting) following a drama filled jaw distraction process and he is already displaying this behavior, with not wanting to be left alone at any time and staying up all night and sleeping most of the day. Do you notice any other signs of apnoea, by that i mean snoring, waking with a fright, stopping breathing etc- you know what to watch for. I ask because Balin had very minimal apnoea prior to pallet surgery, but unfortunately this became severe over the months following, henec we have just had jaw distraction surgery. Every child with PRS is different and unfortunately it is usually a case of "mum knows best." If you are concerned, speak to your paediatrician about loaning an oxymeter from the hospital perhaps to do a download overnight, which may give you some indication, or request another sleep study. Go with you gut on this i think.
We had a sleep study last Monday and today we were told that Olivia has OSA- we are going to see specialist next Thursday to discuss our options for treatment.Looks like we may be back to the CPAP.
Good news for Olivia. Her sleep study results were borderline for CPAP so we are trying something different. Nasal spray! SO far so good. She has now progressed from sharing our room to in with her sister. It has been a very smooth transition for her though I was a bit stressd the first few nights. We will have follow up sleep studies for a while yet as apparantly between 2-4 when the tonsils grow there could be problems again. We reached the 12 month mark last week and what an amazing feeling to have come through it all still laughing and our beautiful daughter healthy, happy and strong. I really hope all the rest of you guys are getting some good news too!
HI all for anyone following Olivia's story our update is that we are back on CPAP. For some reason Olivia's apnoea got worse post surgery. She is back to about 16 obstructions per hour. After going down to 6 per hour pre surgery! After struggling yet again to get her to tolerate the CPAP- endless nights up and down, re -settling etc. About 4 days ago we had a break through where I was able to put the mask and air on her awake and then she slept with it for about 9 HOURS!!!!!!!!!!!Each night we have had the same success. This is like a miracle for us as we have battled with the CPAP machine for nearly 2 years now!!!!!
now im scared now that i have read that you have struggled with cpap for years!!! our 9 week old will not tolerate it all and we are back to sydney for more tests and try to fix the problem. she simply screams whenever we turn it on and once it is tightened to sit on her face. do you have any helpful hints on how to get her to use her cpap would appreciate advice
Hi Libby. I definietly feel like I am a seasoned CPAP'er these days! Here are some tips I have picked up along the way. We found it best to wait until Olivia was alseep at least half an hour before attempting to put it on when she was younger, also wrapping her tightly so she was more settled but also couldn't get the mask off, this is not really SIDS friendly but we wedged Olivia between two pillows so she couldn't roll around as much and dislodge the mask and pipes etc also I would try to re-settle her with the mask on. If I couldn't settle her I would start the whole process again of waiting until she was well and truly asleep before trying to put it on again. My last suggestion is to try to time the air pressure starting with her breathing in. Are you using a humidifier as well? We found Olivia responded much better to that. If you would like to meet up and have a chat when you next come to Sydney I would love to be able to help in any way( I am happy for Jacinta to give you my mob). It is really tough when you are dealing with the CPAP each night and you feel like you are not getting hands on advice from the Dr's. My favourite advice from the Dr's was 'just persist with it'.
thanks for the hints we have come home from sydney with a drug called melatonin which is helping to settle her enough to get the mask on. she has slept for up to 5 hours yay!! i can really see the benefit of the cpap. im going to try some of your tricks as well. it was also good to hear that im not alone thanks heaps.did the cpap give your daughter some nasal congestion in the mornings afterwards? i find madeline has trouble clearing her nose each morning and needs saline to help if not even some suctioning.is this normal?
Hi Libby that is so fabulous that you are experiencing some success with the CPAP and that you are seeing some benefits in Madeline. Regarding the congestion, yes Olivia did and does experience a blocked nose after. When Olivia was younger I used to notice a lot of frothy bubbles getting pushed out of her mouth too! I found it alarming but I was assured that was 'normal' too. I hope you managed to get some good sleep while Madeline was doing her 5 hour stint!
Just wanted to thank Laurel on the useful hints & tips on using CPAP. Its good to know that im not the only one who was dealing with the frustration of a screaming baby.
