Melissa had been seen by the doctors at the Respiratory Unit since she was about two years old. Her breathing was being monitored regularly and particularly how she was sleeping. Sleep apnea is a common symptom of Crouzon Syndrome because of the small nasal passages and the recessed mid-face. Melissa underwent two sleep studies which confirmed that she had mild sleep apnea and that it was becoming more severe. We noticed that her sleep patterns were changing and she was waking up between 2 and 4 times a night. When she was asleep she would snore loudly and we could hear the apnea episodes. Melissa was often quite tired in the mornings and was regularly irritable and un-cooperative. We were hoping that with the removal of her tonsils would be her bad attitude!
The doctors decided that Melissa needed to have her tonsils and adenoids removed as they were of a moderate size and would be contributing to her sleep apnea. They were obstructing her breathing. The operation was scheduled for early 2005 but due to four cancellations, 2 by us and 2 by the hospital, Melissa underwent the surgery on October 21, 2005.
Melissa fasted from 7:30 a.m. and was admitted into hospital at 11:30 a.m. She underwent the surgery at 2:15 p.m. and by that time was quite hungry! Melissa rode a car into the theatre waiting room, which is what she did for her last two operations. I held her hand as she was put to sleep and kissed her and told her that I loved her. I was very good and didn't cry this time. It's always hard to let your child go into the hands of the surgeons but when your child needs the surgery you put your faith in the doctors and you trust that God will look over everything and keep your child safe.
We were told that the operation would be half an hour and not to go too far. So we dashed down to Subway and grabbed some subs and brought them back to the parent's waiting lounge. We were starving as we had not eaten properly since breakfast (I had snuck out for a muffin and a coffee while Melissa was playing in the Day Surgery Unit) but Joe had not eaten at all.
After about an hour we were starting to wonder what was happening and as time went on we were getting a little anxious. But from previous surgeries we know that they often take longer then what we are told. About 4 p.m. the nurse came in and told us that Melissa was settling into ICU. We went to see her and she was awake and distressed. Melissa was put into ICU because she had had some apnea episodes during the operation and it was best that she be monitored for the night.
I spent the night in a chair beside her bed and didn't get much sleep. She had a rough night waking a lot in pain. Her heart rate also kept dropping and the alarm on the monitor rang all night. The nurses were not too concerned about this as they said that sleep apnea can cause this. The next morning Melissa went to the ward. We were told that she could go home when she ate and drank something. Her heart rate did not drop again after this.
Saturday:Melissa did not want to eat breakfast or drink anything in ICU and this continued for the day. Late Saturday afternoon she had vomiting and was given anti-nausea medicine. Bleeding is a major risk with having tonsils removed but there was no blood in the vomit which was really good. The vomiting stopped but Melissa was not interested in eating or drinking. Nothing would tempt her. Before the operation she was all excited about having jelly and ice-cream post-op but she did eat either whilst in hospital.
We were told again on Sunday that if Melissa ate and drank then she could go home. But she was still not interested in doing either and no amount of encouragement would tempt her. We had brought her a bag of jelly beans and she did eat a few of them in the morning but that was it until dinner. Melissa did have a slight temperature but we were told that that was quite normal for after an operation. The ENT doctor came to see Melissa in the afternoon and asked us whether we wanted to take her home but we did not want to take her home whilst she was not eating incase she didn't eat or drink at home either and we would have to bring her back to be re-admitted.
Sunday night she finally ate some roast beef and mashed potato for dinner and she told me that she was bored and wanted to go home. This was good to see and hear! I thought yippee tomorrow we'll go home early in the morning!
Monday morning came and the ENT doctor came early to see Melissa. She had not eaten anything and he said to encourage her to eat breakfast and some morning tea and if she did that she could go home. She did eat a small amount of cereal and she drank a glass of chocolate milk which she ate because of the reward of getting stickers.
The ENT doctor came back about 10:30 a.m. and we told him what she had had. He said that she should eat something rough before she could go home. She ate a chocolate biscuit which she got more stickers for.
For lunch she ate a quarter of a sandwich. We were trying to encourage her to eat more but that only led to a temper tantrum. So we resigned ourselves to the possibility that she was going to be in for another night.
After lunch the ENT doctor came back again and asked how she was going. By this time we were quite frustrated and getting emotionally worn out by everything. The doctor asked Melissa what did she really want to eat. She said another chocolate biscuit. He said that because that was rough that once she had eaten that she could go home and if she didn't improve at home then to bring her back. It took Melissa 2 hours to eat the biscuit but she eventually did, so we were gone!
Melissa ate fries for dinner which is one of her favourite foods so we thought that she was probably o.k. She didn't eat a lot Tuesday but each day she would eat more.
At home Melissa needed Pain stop (codeine) to help her to be able to eat but we saw an improvement each day. We also saw a change in her sleep patterns. The waking up during the night eased with it down to at best once a night. We also heard a difference. Melissa's voice sounded quite different though it's hard to explain how it had changed. There differently was more air in her throat. Still very cute though sometimes hard to understand.
Melissa went back for her follow-up checkup 4 weeks later. All was good.
© 2012 by Jenny Woolsey
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