Thursday, February 20, 2014

Day 4...

So just like every year at Passover we say "Next year in Jerusalem" and every year we are still in Virginia...yep, STILL in the hospital. But things are definitely on track (so far) for me to go home TODAY. And I mean it this time! =)

I saw the PA for my one doctor (not the pulmonologist) about 11:30 am. She was very helpful and said she would make sure all the medicines were in line for me so when the pulmonologist gave the okay, I would be able to leave with what I needed. Although, she did say that since my peak flows were still hovering around 200 (40% of my predicted) that it wasn't likely that I would be going home that day.

I didn't really like hearing that, but honestly, when I took a step back to evaluate how I was feeling, I don't think I was quite ready. I was still coughing pretty regularly and my chest was still feeling tight. When my mom and I were talking, she asked if I felt ready to leave and I told her that I really just wasn't sure. I think that in itself was enough of an indication that I needed to stay.

I saw the pulmonologist again about 3:45 in the afternoon. He again said it was my call if I wanted to go home, but suggested another day or 2 (really did not like hearing that 2...) to get another couple rounds IV steroid, stay on the IV fluids, and get my peak flows up. I decided that we would give it one more day and assuming I wasn't any worse today I would go home even if things hadn't changed too much. I want to get as much benefit as I can from the treatments they can give me here in the hospital, but I also know that the longer I stay the more exposure I get to other germs and potential triggers.

Shortly after the doctor left, my nurse came in and said that I would be moving to a different floor. Apparently I had been on an observation floor since I had been admitted and there was a time limit on how long you could stay there. So I was moved down a floor. Initially I was sharing with an older lady, but when the nurses realized my mom wanted to stay, they moved me to a private because overnight guests are not allowed in semi-private rooms.

As always, I was nervous about switching floors and nurses. My nurses on the observation floor had been great and my mom and I had trained them well with all my issues =) Haha, so I was a bit nervous having to change nursing staff. But just like everyone I've seen here, they have been great. The first nurse I had on the new floor asked a lot of questions and want to learn more about my various issues and ways that we treat them and how she could be help me keep improving. We probably spent a good 30 minutes or so just talking with her about POTS, MCAS, GP, food allergies, asthma, etc. It was really cool to have a nurse who wanted to learn more, and it gave me a way to help pave the way for future patients who may come through this hospital with similar issues. Like I've said before, as much as I don't want to always be going on and on about all my health issues, it's times like that where I can help educate someone else that may be beneficial to other patients that makes me grateful that I can be a part of raising awareness and helping others get better treatment in the future.

It was actually pretty funny later that evening when the nursing staff changed from the day nurses to the night shift. My nurse that we had talked with spent a good 10 minutes probably talking with the nurse who was coming on for the night shift just debriefing him on my case and what was going on. My mom and I could hear every word because my room is right next to the nurses station. We were impressed with how much the day nurse remembered from what my mom and I had told her and how thorough she was communicating that to the new nurse. He was great too and when he was leaving this morning said he enjoyed having me as a patient because I was low key and not high maintenance.

Last night was a good night =) I was able to go 4 hours between treatments consistently and even had to be woken up for the midnight treatment. I had minimal coughing and actually slept pretty well! My peak flows were still around 200, but the respiratory therapist doing my treatments said it's typical for peak flows to be lower at night because sleeping suppresses breathing. This morning I had a treatment about 8 am, I was able to get my peak flows up to about 250! That was higher than it had been so far, and based on how I was feeling and breathing, the respiratory therapist said he would give the okay if the doctor asked. That was definitely good to hear!

So now we are just waiting to see the doctor. My nurse paged him and hopefully he will be by soon and we can start the discharge paperwork. I am SO ready to get home. Yesterday morning as much as I wanted to leave, I still felt like I wasn't quite ready physically. Today, I'm definitely ready! I'm not back to 100% yet, but moving that direction and at the point where I should be able to manage things on my own at home. The nurses and doctors have been great, but I'm ready to GET OUT OF HERE!!!!! Haha, so for real this time - "Next post from my apartment!!!"

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