So How Am I Doing? How Has the Transition Been?

Feb 17, 20215 min read

I've been too focused on fighting whatever this bug I caught from the hospital to really have time to do much else. Even while sick life goes on, days pass, and routines are made. Covid test did come back negative!!

I'm getting the hang of things and making a routine for myself. I handle all my care and cleaning and changing of everything. I just add my tracheostomy care in at the same time I clean my J-tube. It works out perfectly.

I am moving around more and getting used to maneuvering around with having the trach tubing. Yes, I have hit myself in the trach. Yes, it is uncomfortable. No, it doesn't hurt. It just takes some getting used to and self awareness that you have this thing now at your neck.

Even while sick I've had my silly moments where I've broken out in random dance (standing still, silly moving my arms, torso dance, nothing crazy). My youngest thinks it's the greatest thing while my oldest probably thinks I'm nuts. It's ok, just wait till she has friends over and let them be them judge. Ya know I'll be the cool mom they all talk about 😉

Everything is a learning experience. You just roll as you go and so much of it is trial and error. Finding the products you like or the ones you use most, etc. It just gets integrated into life and routine that soon its like you've been doing it forever.

I think the biggest challenge for me was changing clothes and bathing/showers. Both for various reasons. Clothes in the beginning was hard, especially with stitches because you really don't want to move your neck. Everything hurts! Moving even your arms is a task in itself. Trying to put on pants is hard because bending down is a whole different thing too. Pressure in your head also puts pressure on your trach which can make you cough. Coughing with a new trach is not fun, NOT fun. And I've been sick!

With bathing its just the whole setup. It takes a different ventilator circuit. So you have to disconnect everything and then reconnect the circuit your going to bathe in. I learned recently if you shower and have a cuff, deflated it!!! I'm glad I wasn't alone because I had a moment where I could not breathe!! Stream loosens mucus, and with the cuff inflated mucus had nowhere to go but out of my nose. While I couldn't breathe out of my nose anyway, secretions from lungs were also loosening so I started coughing which meant vent air wasn't reaching my lungs. I can't just disconnect my circuit in the shower. I knocked on the wall, I gave the sign I needed to deflate the cuff and I was quickly able to get air!!

Unfortunately I'm not sure how this work as my lungs fully decline. For now I am thankful for what I have. I can use my lungs freely when I want and need. In all honesty letting the vent do the work has allowed me to have so much energy back. I do have chronic fatigue but I feel more like myself before my lungs started to decline rapidly and literally drained the life from me. Regaining that again feels SO amazing!!! 🥰😁

Not everything is sunshine and rainbows and fuzzy warm hugs upon shiny stars and dreams. Trust me I wish they were. I have my moments. I have those random times where I question if I made the right choice. Did I do the right thing? What if I did this, only for it to fail? There's just so much we don't know still. I'd be lying if I said I didn't have these thoughts or that I didn't question myself or the surgery, etc. I do. I do for various other reasons too though. Life support wasn't really something I saw myself ok with as an option for me personally. It was definitely a challenge in accepting it. As fast as I had to decide it was very hard. I'm very thankful that I am able to allow myself to have more time with my children and husband. I know they need me!! It doesn't take away the reality that my time is still limited even if I prolonged my life more that we never know how much more that might be. Each day is a true blessing 💜

My youngest has not left my side since I've been home and has wanted to know what everything is and how it works and how I'm doing. She's glued to me more now then she's ever been. I know I made the right choice, I know that even if all fails whatever time I did buy myself was absolutely worth it to her! For me to have spent it with her and seeing her smiles and hugs and extra cuddles and laughs. Whatever comfort she needed, I'm so happy I'm here now to provide for her. That's all that matters right now!! That's all there is to focus on. 🥰

My oldest is coping in her own way. But she's coming out of her room more now and hanging out on the couch beside me and asking for hugs. She'll come out and spend time with my youngest and I. She's my quiet kid, who doesn't like to talk about how she feels. She's kinda in this phase where she likes to be in her own space doing her own thing right now too. I'm ready for warm weather so I can get them outside doing stuff!! I need to get some fun outdoor actively stuff for them. 🌞

My talking is coming a long more. I need to make a new video soon. I cannot believe today, Feb 17th am 3 weeks post op! It's so crazy to think about. I have been deflating the cuff fully now too!! What's hard is I'm unable to take in a big enough breathe to get out what I need to say or repeated breathes to have a conversation or to repeat what I say. I still have to rely on the app a lot. At least I can say some stuff, which is nice and super helpful.

The reality is though once my lungs completely go so will my voice so I'm trying to still make videos as much as I can now before that happens. Right now even with the cuff fully deflated it is hard to talk. It takes so much muscle strength to take in air and exhale air to talk, after a while it's exhausting and eventually literally nothing comes out.

We all know I'm not a quitter! I won't stop fighting or pushing forward. I am so ready for a good adventure! Not in the ice, haha! I need to start planning on where to go or what to do next. I'm ready to see something new!! Some new sites, a car ride! Ready to be outside again!! It's coming, I can feel it!🍀🍃🌴🌷🌿🌸🐜🦋🦨🐾🐄🦊🦝