sleep deprived

The weekend was a shocker. Ethan was very agitated and cranky. I gave breakthrough after breakthrough but nothing calmed him. He just kept on going. I thought he would crash Saturday night but he didn't. The longest sleep he had was 2.5hours.

Sunday's nurse stayed for ages. She was unsure how she could help him or us. Many scenarios were thrown around between her, the doctor, Kristen and I. These included medication increases and changes, catheters and hospital/Very Special Kids admissions. Luke had taken the girls to a swim meet and I didn't want to make any major decisions with out him. In the end, we decided to increase the pump and be reviewed today.

No surprises, the increase in medication didn't really do anything. The review today resulted with another increase in pump medication and a big increase in night sedation. If this doesn't work, the Dr advised us to admit Ethan to Very Special Kids before Saturday to prevent carer burnout. He didn't think Ethan had urine retention, so a catheter wasn't inserted. So glad we didn't do that yesterday! The pump is now at Nozinan 20mg, Morphine 50mg, Midazolam 30mg and Dexamethasone .5mg. The night sedation includes doubling the Melatonin and increasing the Clonazepam by half. Hopefully this works and he can get some well needed sleep.

Today, Ethan has remained agitated and cranky with intermittent pain and is still eating non stop. He is a remorseless eating machine that will eat anything. He reminds me of Augustus Gloop. By morning tea time, he had eaten a full days worth of food. I never thought I'd see him eat like that.