Our Time With ENT

So we took a trip to see the ENT, he was fab. On the basis of my video evidence of Boo sleeping he has diagnosed Sleep Apnoea with Grade 3 tonsils and probably enlarged adenoids. I didn’t imagine that whipping out her adenoids and tonsils could have a massive effect on her wellbeing and her tiredness levels. The ENT had her pre-op done there and then.

Surgery was a good three month wait. She was booked in for first thing in the morning for day surgery and should have been going home sometime that afternoon. Boo was a superstar. She packed a bag with her pajamas and brand new “hospital” teddy. When the time came I went down to surgery with her, she walked most of the way holding my hand but then once inside the surgery area she was allowed to drive an electric car to the anesthesiology. I am sorry I have no pictures of this cus even though Boo took everything in her stride mummy did not and behind my smiles and pleasant chatter with the nurses I was in turmoil. I felt sick to my stomach that even though I knew this would help her feel better, I was the one putting her through all of this. All the medical staff were amazing with her, in the room she lay on the bed and they played Frozen, I held her hand and her doctor sang ‘Let It Go’ to her so she was laughing herself to sleep. I was amazed how quickly that happened, one minute I was smiling at her telling to be strong the next moment she was asleep and I was allowed to give her one last kiss before I had to leave and she was wheeled into surgery.

For 30 minutes me and Gluten Free Daddy sat in the hospital canteen endlessly checking our phones (the nurses said they would ring us when she was ready to come back to ward) and drinking bad hot chocolate from a vending machine. When we finally did take the call GF Daddy was the one to collect her from recovery. I was aware that she was having coblation surgery, a procedure where they burn the tissue with low temperatures using a handheld electrical device rather than remove with scalpel, and therefore her recovery time would be quicker. I was still, however, shocked to see her up and awake as she was wheeled in from recovery. Within 30minutes she had eaten and was in and out of napping. All seemed perfect until everyone was being discharged and sent home except us. The nurse then told us that Boo’s oxygen levels were too low for her to be allowed home and we should make plans to stay in for the night.

Overnight Boo’s oxygen levels kept dropping, they wanted her to have an oxygen level of 93% but hers was falling way below this every 30 seconds and staying low for a good minute. Eventually in the middle of the night the decision was made to put her on oxygen. I spent an entire night watching a monitors red digits in the darkened hospital and waiting for the inevitable beeping of Boo’s monitor alarm. It was a scary night and lonely, I wanted to hold Boo but wanted her to get rest, I wanted to hold Hiccup and GF Daddy but they were home in bed.

When she woke up the next morning she was SO much better. Her oxygen levels were great and she spent all day playing in the playroom and taking occasional naps, however because they were fearful her levels might drop again at night we needed to stay in a further night. The hospital staff were amazing, nurses and doctors alike were so lovely to her and even gave her a teddy to take home with her for being so brave. I was amazed to find they had gluten free food options on the hospital menu and I could get her lots of GF snacks from the hospital canteen.

Surely enough the second night was much like the first however the next morning Boo didn’t wake up full of beans ready to play, she slept and slept, when she woke she couldn’t eat and complained of feeling unwell. Somehow she had managed to contract an infection, she was so poorly that another night on ward was needed. This time our night was full of blood tests and IV antibiotics to treat the infection.

Finally the next evening we were allowed to come home but Boo slept with me for the following week. I missed that bony elbowed kid when she went back to her room. It only took her about 3 days at home to recover and she even managed a school trip on her second week after the op.

3 months on and her snoring has definitely gone however the sleeping thing still seems to be a problem, she is still constantly exhausted no more than an hour after waking up and she still appears to not be breathing for periods when shes sleeping. A GP has agreed the videos we have taken since still don’t look good so in 4 weeks we have another shot of seeing a pediatrician…..this is our last shot of someone helping us and I wont be leaving until someone does!


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