Tonight I cracked a bit under the strain of being here day after day and of feeling trapped into procedure after operation after procedure but still being asked to CHOOSE them. So laughable!! We have not been given a choice since day one! Any of us!
I think maybe I need to surrender. Just give Rose over to the experts and focus on helping her at the other end. Let them do their gastrostomy with fundoplication (that’s to deal with the damage the gastrostomy causes to her tummy) and if that doesn’t work or her home C-PAP isn’t enough, tracheostomy. This all seems to be the path towards our fabled homegoing. It’s not forever and she won’t be the first or the last to survive and recover through / by similar procedures.
The problem is I can’t help feeling that a lot of her issues can be resolved with time and growth. My REAL problem here is my ideology, I know. I am trying to apply the same rules I learned during pregnancy and child birth to this very different situation. I am absolutely terrified of unnecessary intervention and it’s consequences. But I can’t tell what is unnecessary.. perhaps if it’s proposed at all then it’s necessary?
I felt almost sure the gastrostomy was the way to go until the surgeon told me it was likely to cause severe reflux and a fundoplication should be done at the same time to deal with said reflux. Now I feel like we are back at square one but without any alternatives. I’m not sure why this wasn’t raised at our last meeting. It baffles me and makes me feel worn down into the horrible blue green lino covering the floor (bit of bathos there, Mrs Reynolds).