(This post is bound to be all over the place so bear with me) One month ago today my mom left this earth. I feel like I have been treading water for the last month just trying to stay afloat. I am an emotional mess at times when the memories flood in or something triggers the overwhelming feeling of not having my mom here anymore.
My sister found voicemails of moms and sent a few to me. I didn’t realize how amazing and sad all together it would be to hear moms voice again. I don’t remember when I last heard her voice myself in a phone conversation. My “recent call” log isn’t going back far enough for me to see when the last phone call was between us. The last time I saw her in person (before the hospital) was January 7th when she flew home to KC. The last text conversation where she responded was January 14th at 9:15pm. I hate that I don’t remember when I last said or heard her say “I love you.” I do know it was in our last phone conversation because we ended all conversations with “I love you/Love you” but I don’t know when that was. It didn’t help that we both were sick, worn out and on different sleep schedules which meant that it was hard to get ahold of each other. We would text each other and wait for a response whenever the other woke up. If I hadn’t gotten a response in what I deemed too long, I would text “Marco….” She knew that meant she at least needed to respond with “I’m sleeping/been sleeping” or something so I knew she was ok. I sent one of those “Marco…” texts and never got a response. I miss her so much and the thought that I will never see her again is incomprehensible.
Now onto me and my health update: I have been out of the hospital for 1 week today. I finished IV antibiotics last night. I had to get labs drawn again this morning because my white count was elevated on Monday when I had labs drawn. My white count was 10.2 the day before I was discharged from the hospital and 21.4 on Monday. Normal range for our lab is 4.4-11. Today my white count was 11 so it was back in normal range barely. The nurse practitioner who looks over all the labs will let me know if there is anything they want to do on Monday. As long as I’m not running a fever and don’t feel like I’m “coming down with something” I should be fine. I have a CF clinic appointment on Thursday the 25th, this coming week. It should be an interesting appointment to say the least after 16 days in the hospital and what will be 13 days out of the hospital. CORRECTION: My white count was NOT down to 11. That was my hemoglobin. My white count was still up at 20.4. I have my appointment on Thursday in CF clinic so we will talk about what we are going to do then as long as I maintain until then.
I am adapting to life with oxygen as best as I can. It is easy when I am at home because I have the concentrator and 50 feet of tubing where I can roam around easily, unless I get hooked up on something and then my head gets jerked. Quite comical really. I am working on getting a better portable oxygen option. My clinic has sent a script to the supply company for a smaller easier to manage option. Now I wait to see what they say and if insurance will pay for it. Having an easier portable option will hopefully make it easier for me to do a Walmart trip without having to stop multiple times to catch my breath. I attempted to grab a few things from Walmart and I thought that if I had a cart to lean on and took it slow I would be good. Well the lungs won this one. By the time I got to the car I had to calm myself down and out of a panic attack because I couldn’t catch my breath. It makes it feel like I can’t get enough air in or deep enough to expand my lungs. It is scary. It’s a major mind trip not being able to bounce back to where I used to be or even where I feel like I should be. Usually I can do more after getting out of the hospital but this time it’s different. My lungs took a major hit this hospital stay therefore it is going to take a lot longer to regain my strength and recoup from this one. I don’t know that I will get back to where I was, say last year but I know I can make progress. I’m not saying that as a defeated person or a person with no hope but with the reality of the hit my body took and the work it is going to take. I am doing my best not to over do it which is somewhat easy because my body doesn’t allow me to.
I have been looking over transplant centers statistics trying to get an idea of what is available. It is an overwhelming decision process that I am not looking forward to going through. I will post more about this later in a dedicated post so that I can cut this post here otherwise it will be much longer than this and I have kept you long enough.
Until next time…