Thanks to the CAP/C program Graham qualifies for a nurse 126 hours a week. Matt and I have arranged our hours such that Monday through Friday we have a nurse 8am to 6pm and then 10pm to 8am. And then Saturday we have a nurse until 1pm and then Saturday night and Sunday night. All the hours we don't have nursing Matt or I need to be with Graham. Graham is fairly stable on the vent but things can get serious real fast for Graham if something happens.
Having a nurse to help care for Graham has been a blessing in many ways because it allows me to go the grocery store, or care for the babies, or take a shower, or travel in the car with Graham. But it is also very difficult to entrust Graham's care to strangers. We have had 20 or more nurses since Graham came home in April. Some of them are very experienced with trachs and vents and others don't have a clue what they are doing. So I have learned that I must evaluate the nurses and not assume they know everything. In addition to having the necessary medical knowledge and experience a nurse needs to be able to get along well with Graham and with Matt and I.
We had a great nurse 4 days a week that recently took another job outside of home health. She adored Graham and he adored her. We are pretty devastated. We have some other good day nurses that are taking over but this other nurse was just such a great fit for our family. No nurse is going to love Graham as much as me or do everything the way I would do it. But I have to run our household and care for the twins too, so I need help. Getting and keeping good nurses is a constant struggle and prayer need for us!
It is all so very true! The good nurses are so hard to find...even three years into this crazy journey! It is also so hard when your best nurse gets another job, because you feel like you have to start all over. Praying for nurses who are good fits for your family to be found quickly!
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