We have never had any sort of respite nursing for Corrigan’s care and aside from Mark and I, there isn’t anyone that knows about Corrigan’s medications, and how to feed him, should Mark and I be unavailable. I don’t like to think what kind of situation would render both Mark and I unable to care for Corrigan but (God forbid) if the case should arise we need a plan.
While I sent word of my “wishes” to my sister a long time ago, nothing is legally taken care of in this regard and it is something that we need to take care of sooner, rather than later. In the meantime, I thought it might be useful for Connor to learn how to tube feed his little brother.
Corrigan has been upset with his g-tube for quite a few months and anytime I approach his button he gets upset. He tries to be brave but it really upsets him. He was perfectly content with his feeding tube until the first time that Mark and I had to change it out for a new one. I don’t know if it felt weird to him, I worked quickly and gently and do not think I hurt him in any way, but the event made him hyper aware of his Mic-key button and now he hates it.
My phone works to distract him for the most part but nothing truly distracts him from the fact that someone is touching something on his body that he doesn’t want them to touch. I hope that it is just a phase but it has been going on for awhile now so bolusing his formula or meds can be a little stressful. Connor was not stressed about it at all and jumped right in for his first attempt this evening.
We first practiced with water and a cup, Connor was already familiar with how to lock (and unlock) the tubing from his button, and after a few water tries we brought in the angry toddler. It wasn’t awful and I didn’t have to persuade or restrain Corrigan in any way but he was unhappy as usual.
Connor will be doing a few more small boluses over the weekend so that he can get even more practice in, and Corrigan can get used to someone other than myself in that area. I love that Connor is so willing to learn. My Dad, when I told him that I was training Connor, said that he would trust Connor for sure and I agree. I wouldn’t teach him otherwise. He is careful and focused and Corrigan didn’t give him too much heck the first time around.
I know I need to teach Corrigan’s grandmas and others how to care for him in this way, tube feeding is not in any way difficult, but it is hard for me to hand over the control to anyone else. I feel better though knowing, that after this weekend, every person in this house can tend to Cor’s needs.
Thanks Connor. You are amazing.