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!
Thursday, October 15, 2015
Wednesday, October 7, 2015
October is for Birthdays
Graham turned 3 last Friday (October 2) and the twins will turn one on October 21. Last Saturday we had a Sesame Street birthday party to celebrate. We invited a few friends and family. We did things easy: bought all decorations at Party City, cupcakes at Harris Teeter, and pizza from Dominos!
We are so so thankful that Graham made it to his 3rd birthday. It has been quite a year for Graham and our family. There were many times we thought we might lose him during those six months at Duke Hospital. But the Lord spared him and we are enjoying every day at home with our whole family. Praise God! On Sunday the teacher at church asked us to close our eyes and envision the most beautiful place we had ever been. My mind oscillated between the Chowan River, where my parents now live and where I spent all my summers growing up, and sitting in Graham's room in the glider rocking him when he is having a hard time going to sleep.
I can't believe Ben and Hallie are almost one! They are such a joy. They are usually in a good mood and smile easily. They love finger foods. They are speedy crawlers. They want to play with whatever big brother is playing with, which often causes trouble. Ben finally has two teeth and Hallie still has none.
We are so so thankful that Graham made it to his 3rd birthday. It has been quite a year for Graham and our family. There were many times we thought we might lose him during those six months at Duke Hospital. But the Lord spared him and we are enjoying every day at home with our whole family. Praise God! On Sunday the teacher at church asked us to close our eyes and envision the most beautiful place we had ever been. My mind oscillated between the Chowan River, where my parents now live and where I spent all my summers growing up, and sitting in Graham's room in the glider rocking him when he is having a hard time going to sleep.
I can't believe Ben and Hallie are almost one! They are such a joy. They are usually in a good mood and smile easily. They love finger foods. They are speedy crawlers. They want to play with whatever big brother is playing with, which often causes trouble. Ben finally has two teeth and Hallie still has none.
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