Flying Solo

Since we came home on the 11th we have had a nurse here for the overnight for all but three nights: Christmas Eve, Christmas, and New Year's Eve. Other than that we have had a set of professional eyes on us each night to double check that things are going well, take care of Ellie during the night and answer the alarms that seem to go off when you have just gotten to sleep. The nurses gave us general support but we still participated in anything that was complicated because we know our girl and her care a lot better than anyone else could.

Most nights it took half an hour to get the nurse up to speed with the big picture plan and the report for the day and then we would go to bed and sleep. Really sleep. It was nice to have those hands there for the overnight period so we can recharge for the next day.

Last night we went solo for the first night. We had the other three nights over the holidays to get ready for it an practice the new routine but last night was go time.

Ellie's various plumbing needs care every three hours during the night. Not just a diaper change but real care that needs clear thinking and needs us to be truly awake. We have come up with a plan that will let one of us take the early and late spots at 12 and 6 and the other one gets 2 and 4. The 12 and 6 person gets to sleep for a long stretch in the night and the middle person sleeps in in the morning from 4 'til 7 or 8. It isn't great but it works.

Fortunately there is the possibility of help on the horizon. How far off that is depends on the Massachusetts state health care system that is in the process of determining what Ellie's status is and what nursing they will provide. It has been a while since we applied for 'MassHealth' and we are still waiting for them to make the call that Ellie is 'disabled' and needs special care. In my book three extra holes in your body and two pumps that you need to live make you disabled automatically but they need to make the call officially. The information that we have gotten from the nursing agencies is that Ellie will get between 10 and 12 hours of nursing a day if she is like other kids with her accessories.

So for now we adjust and learn a new nighttime routine.

We can do it but there will be some long nights to come as we bump up Ellie's food and try new drugs which sometimes make her very grumpy, especially as she sleeps.