I didn’t think I would feel this way. As a parent of a child with any sort of condition, you always want to see your child take steps towards ‘normalcy’. And don’t get me wrong – I certainly do, but even when your child is taking a step in the right direction, it’s not always as easy as it might seem to let go of what you know and are comfortable with.
Yesterday marked the one month anniversary of Atticus’s decannulation (trach removal). He had a trach for over two and a half years and although we were elated for it to be removed, we had also grown used to it and comfortable with it, and honestly, a little attached to it. For that two and a half years, we knew that no matter what, he would have a stable airway. Atticus has a cold? Atticus’s LM is swollen? No problem, we knew his airway wouldn’t be compromised because he always had that back up. The days after the trach came out were certainly a transition, but we learned to live without the trach and are happy to see him without it.
With trach removal comes other consequences. For example, today marks the end of Atticus’s home nursing care. We were so lucky to have had daytime nurses the whole time Atticus had a trach, so that we could work full-time. We were also lucky to have had some pretty amazing nurses. They were all so caring and great with Atticus, and he came to love them just like he loves me and Brian. I know that after today, when the nurses aren’t there, it will be a hard transition for us, and for Atticus as well. He is old enough now to realize that they won’t be there anymore. He has grown close to them and asks about them when they are not there.
We went through nurse goodbyes when we moved to Raleigh from Charlotte. One particular nurse had been with Atticus from when he was 7 months until we moved (he was just shy of two and a half), and that was a hard goodbye. Atticus’s other nurse in Charlotte was only with him for a short time, but they grew very close in that time – another hard goodbye.
And, for me and Brian, we have had the consistency of these nurses in our lives through all of the hard times that we have been through – all of the surgeries, recoveries, bleeding episodes, etc. They have been like family to us and it is emotional to say good-bye – not only good-bye to the help they provided to us, but also to all of the love and care they gave to Atticus. I honestly cannot put into words how amazing our nurses have been, and how much they mean to Atticus, but I’m sure they all know. Especially when they walk in our home and his face lights up. It will be hard on him, and us.
And, in our situation, Atticus’s trach is out, so we no longer qualify for nursing, but his surgeries are nowhere near over. We will now need to be even stronger and go through these recoveries on our own. I know it won’t be easy but we’ve already proven that we can get through a lot.
I am forever grateful to all of the amazing nurses we have had, and for everything they’ve done for us. Thank you for being there through everything. We will never forget you. You know who you are.