Sleep

1. Our daughter needs 24 hour care. Either we have night nurses and we get to sleep, or we take shifts caring for her through the night. 

(Parent of a daughter)

2. Our child sleeps in her own room and we have a camera in our room that overlooks at her all night. If she moves (she has a trach so she makes no sounds) we can hear noises in the camera and wake up. It works fine for years now.

(Parent of 17-year old daughter)

3. Our son has slept in his own room for the last 2,5 years. He is nearly 4. He is hooked up to a Sats monitor which alarms when he cries, moves around or has any issues with his sats lowering. We also use a camera monitor on him. His bedroom is next to ours and we have both doors open so we hear him very easily. We usually go in around 4 times a night just to suction him or settle him back down.

(Parent of 4 year old son)

4. We take turns sleeping with her in her room.

(Parent of 7 year old daughter)

5. Our daughter is in a room with her two brothers and only because we couldn't fit the medical bed in our room. She was in our room till she was 5. She is on a vent and sats and feed all night, so we take turns going to check on her. 

(Parent of a 6 year old daughter)

6. Our son is 12 and slept downstairs in our living room with a night nurse until he was 3 years old and his trachea removed. He then moved into our room until he was 10 as we had no other room for him. My eldest son moved out and we moved him then. He was on C-PAP ventilation and PEG feed and we had no night support. He now refuses to wear his C-PAP mask and his feed is given during the day. We do have night support now 3 nights a week as he has apnoea and awakes several times each night. On the nights we have no support I watch him on our little camera and so far this is working well.

(Parent of 12 year old son)