So Friday was such a stressful day. I had a new nurse and yet again my medication was messed up. I think it is absolutely ridiculous that pharmacy only sends like 1 dose down to the floor at a time. When I need that does every 3.5 hours, being even 20 minutes off is a problem let alone the 2 hours I had to wait the other night. Ridiculous. On top of that even after almost 2 weeks there I still had a nurse argue me almost every single day on when I need to take my meds. I hate when they do that. I am mentally with it and I know when I take my meds. Good thing I am mentally with it, God help all the people that aren't and are probably over or under medicated or given the wrong thing. I mean one night I was woken up to take codeine- codeine in the middle of the night with no food, when I have GI problems, and having never taken it before. I wasn't even in pain. Un-be-lieve-a-ble!! This hospital stay was the absolute worst I've encountered to say the least. And that's from someone who's been in 4 different hospitals in just over a year.
Anyways, then the food made me feel sick again- 4th time. And then they finally removed the line- hours after they said they would. It was just kind of a weird experience, not painful though fortunately. The doctor prepped me, then basically told me to hum and hold it until he told me to stop as he pulled out the line. They said that was so no air gets in- I don't know how it works, but I listened. Line was out and he put pressure against me for a while, then bandaged me up and had me lay flat for 30 minutes. I don't know the reason behind that either but I'm guessing to clot the blood or make sure I don't faint or all of the above. About an hour and half after going down to IR I was taken back to my room. But then I got really lightheaded and my blood pressure dropped again. Could be from getting sick from the food earlier. So they put my feet above my head once again. My dad got me a delicous Fontano's sub and after eating my blood pressure went up enough and they prepared everything to discharge me. I got home shortly after 8pm... and was surprised by flowers waiting for me :) Thank you.
Just in time to celebrate my birthday at home!! I mean there was talk of a super awesome hospital party in the works... but I think sleeping in a comfortable bed with good food beats that. All things considered, it was a pretty darn good day. Starbucks at breakfast, got some flowers and balloons, and got to GO OUT for dinner!! That's kind of a big deal lol. Those moments I feel strong enough to go out are just about the best. My day was filled with a bunch of little things that made me smile. Thank you to everyone who sent messages, texts, calls, cards, flowers, etc. and made my birthday special.
Today I've been trying to get stuff done- you know super fun medical bills/claims... and laundry. Probably shouldn't have done as much as I did so soon because I'm already feeling it. I just hope it doesn't set me back and that all goes well to go into surgery. Really that's all I'm focused on at this point. Just get me to the OR and operate. I have waited and waited and once this is over I will be so very happy. I will no longer be quite as concerned with making sure I stay far away from anyone with the slightest cold, and no longer have to fear that a flair up will delay this, and can hopefully move forward in life with remission around the corner- hopeful!! Of course they want to put me on immune suppressants after and then I have a much higher risk of all of those problems, but at least I don't have to worry about the surgery coming up and a hospital stay will be a regular hospital stay... and not at this hospital!
Tomorrow I look forward to hopefully taking a regular shower for the first time in 2 weeks and for the last time in probably even longer than that. Because of the central line I had to be extremely careful showering with my chest/neck covered. Washing your hair without getting your neck or chest wet is pretty darn hard. Even after removing the line I've still had to keep the area covered and dry. Tomorrow I can remove this and hopefully it looks ok so I can shower normally. Then its back to not due to having to keep my chest dry from the surgery. Again, those little things, like a regular warm shower- so delightful.
This will probably be my last post before surgery. I need to call tomorrow afternoon to find out my instructions but they said it will most likely be a 4am admission on Tuesday. Crazy! I don't know how soon I'll feel up to getting back on here after surgery. Just as a recap, my surgeon will be doing robotic surgery- 3-4 side incisions to remove my thymus located in the center of my chest. Hopefully he will not have to spread any ribs as he mentioned that is a risk with a smaller framed person. He has to collapse one lung to get through. The surgery is expected to be about 3 hours start to finish. As long as I am breathing ok coming out of surgery I will not be put on the vent after waking up. I will have tubes coming out of me for draining and will be sent to the ICU with expected time of about a day before moved to a regular room. Then expected to be there a few more days until my pain is well controlled and I am able to move around on my own. If the surgery makes the MG go out of control, which it can, then they are talking about more rounds of plasmapheresis before discharge. Sooo depending on how everything goes I should be in the hospital anywhere from a few days to a few weeks. Still hoping for the best!
A lot of people have been asking what they can do, what they can bring me. Know that I sincerely appreciate everything... it brightens my day and reminds me you care. Thank you to everyone who made me feel loved and showed support while I was in the hospital. Most of my family and friends know I hate asking for help or asking for anything. But a friend in San Antonio once told me that by denying help I am denying that person's joy... because being a blessing to another brings joy to oneself. So to answer the question a lot of people have asked me... here's what I think would be the best help after surgery... healthy food. No joke. The hospital food is the worst hospital food I've had... not extemely bad in taste but just SO unhealthy, all pre-packaged, chemically altered stuff. When I'm trying to get well that's the last thing I want. So if anyone is looking to do anything I think a healthy meal or healthy snack would be best. I know I'm a picky eater but I've gotten a lot better and at this point probably the only thing I definitely won't eat is seafood and mushrooms. The biggest thing is just making sure I am able to eat a regular diet because first they need to make sure my swallowing is functioning ok. Even shortly after getting discharged meals are probably still the best thing. My parents have been doing SO much to help me out and I know when I'm first discharged I'll probably require a lot of help and thus taking anything off them as little as preparing a meal I know would be a huge help. One other thing would be just to help get me anything I need from the store since I don't know how long it will be til I can get out on my own and again that's something my parents have really taken on. But really, anything, even a message to say hello, means a lot to me. Thank you.
Off topic for a minute but I posted a few pictures on facebook of my stay in the hospital. Most anyone with a chronic "invisible illness" knows how much "you look fine" drives us nuts. So for the first time I decided to post some pictures that show me not looking "fine." I would post some here but didn't because of this being public versus facebook being private. If anyone isn't on facebook and cares to see, I'm happy to share them.
Another thing I posted on facebook I'm going to share here to wrap up... just a thought to ponder or such. Of course we're hoping for the best possible outcome with surgery, but you just never know. Here's what I said. "For some reason we all have this misconception that life will last well into the 80s, 90s or more. The truth is we have no idea how long any life will last. So leave every room with a smile, end every visit with a hug, every conversation with love. No matter the person, no matter the problem, no matter the mood. I challenge you this- right now, reach out to someone you have some sort of problem with, a grudge against, angry at, abandoned.... and make someone smile, rekindle a relationship, apologize, heal a damaged heart. Be the one who makes it not about the amount of years in your life but the amount of life in your years. Love and be loved. Always."
Blessings to you all.
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