Hi everyone, we want to ask that you be praying for Ruby, that these corking trials would go really well and she would be able to get the trach out sooner than later. They haven't been going as well this week as they did on the weekend. It could be that she was weaned off some drugs this week. It could be that she has a tooth coming in. It could be that she has an infection of some kind (thick yellowish secretions have us wondering). We just don't know.
Charlotte had a conversation with the ENT surgeon to get some more information (finally) and though she seemed to think it was possible for Ruby to succeed with the corking and get the trach out, she recommended we prepare to go home with it. We only found out yesterday that in order to go home with the trach we need to have home care arranged through the NB healthcare system and it can take a couple weeks to get that done. We also only found out this week that to be trach trained (what they call it when you're qualified to care for your trached child at home) you need to take the trach out twice and put it in twice. That only happens twice a week and Charlotte has only removed it once and I've never been there for it. Suffice it to say, we would have insisted on being involved sooner had we known, which we did not.
We are getting very frustrated with how things have been handled. They should have started making homecare arrangements two weeks ago. They should have told us that we need to help with the trach changes. They should have told us that if she goes home with the trach she may not get it out for 6 to 12 months (they only said, "It probably won't be permanent"). We should have known these things and we didn't. Not because we didn't ask, we pushed hard to find out this information and that's the only reason why we know it now. Cardiology has been following her and they don't have much experience with patients that are trached (Ruby is their third, from what we know) but instead of working extra hard to figure out how to administer her care and keep us informed they just said, "ENT is in charge of that." and did nothing.
We are going to continue corking trials aggressively (as aggressive as possible with a little baby) in the hopes that she can have the trach removed in the hospital. Otherwise it might be mid June before we can both be trained and ready to bring Ruby home. I'm looking into taking more parental leave in order to switch places with Charlotte and let her come home for a change.
We are tired. We are frustrated. Please be praying for us, for Ruby, and for the people in charge of her care. We just want our family home.
