Crazy Awesome Weekend with Family!

Living On Oxygen for Life

I had a very long but fun weekend. First was the Pulmonary Hypertension doctor appointment and an Arterial Blood Gas drawn. Then we ate lunch at McDonald’s because we had other things we needed to do. We had to run to Walmart to return some stuff and pick up some forgotten thing from the grocery trip K did the previous day. Plus we picked up a new inhaler at the pharmacy. That was all on Friday.

When we came home from the errands, we got busy finishing up with cleaning the house because family was coming!!!! Yay!

After I made it to bed feeling exhausted, I knew I had to get up way early again for another appointment on Saturday that was a little over an hours drive away.

While we were at the appointment, my sister & her family already arrived at our house (we call it The Chateau), and we finally got home around 2pm. Yay! 

We got to babysit my niece for 4 hours, which was super fun but by the time they got back, K and I were wiped out.  My niece must have some sort of super-charged mega-battery that keeps her pumped up with energy.  I asked to borrow it but I didn’t think it’s transferable. Darn! 

We had so much fun but I’m glad we didn’t go to lunch with them today. It’s time for this girl to crash. I need sleep or at least down time. My niece is 7 and she asked me lots of questions (even taught me a two person hand-slapping song that was called Lemonade. I think?!) about my bipap mask that I was using when she snuck in my room to see if I was awake yet yesterday during my very short nap. She wanted her own cannula. She also wanted to see what it felt like with it connected to the oxygen. 

So, like a fun Auntie that I am, I used it as a learning experience for her. I got her a 7 foot cannula (like the ones used with portable tanks), connected it to one of my oxygen tanks, and I turned the oxygen on to 2 liters first. She wasn’t really impressed. So I told her, “Ok, now this is was it feels like at the amount that I have to use which 6 liters.” Her eyes got really wide when she felt it in her nose and she said, “Whoa! How do you do that?” “Baby girl, I do it because it helps me breathe.” 

I always want to make sure that she knows it’s ok to ask questions about me or my equipment. Curiosity can be a good thing when paired with learning about something that will expand her mind. We had a great time this weekend and I feel happy as I always do when I get to see one or both of my sisters. It’s like medicine to my soul. Sounds a little corny but it works for me. 

11 thoughts on “Crazy Awesome Weekend with Family!

  1. Thank you for your blog. I was prescribed O2 in early November and it’s been such an adjustment for me and my family. I also have limited mobility and that doesn’t help. Your blog has made me feel better about myself and this whole new way of living. Thank you. Also, when I first got my O2 my kids and husband all tried my cannula to see. It’s best if they know what I’m getting to deal with. Thanks again.

    • Hi Vicki… you’re so welcome! I think the hardest thing about using oxygen is the planning of how much oxygen I’ll need to go somewhere and the anxiety that goes with it. It helps having family who tries to understand what you go through. I hope you are doing well. *hugs*

  2. Christine, I thank you for writing this. It is exactly how I feel when I go out to do errands I am on 8 liters of oxygen 24/7 so planning and doing little things can take a toll. Always glad to read that my problems are “normal” problems for people with PH. Keep on posting! take care margie

    • Hi Margie!!! I’m so happy that you’re getting out of the house at 8LPM. You make ME optimistic about my future when I will have to increase my oxygen. Thank you for posting your comment. I really appreciate it! *hugs* Stay well. ❤️

  3. Glad to see you made it through the storm. How are the folks on oxygen faring down there?
    Blood gas drawing HATE HATE IT, But, one of the RTs took it from the brachial artery, doesn’t hurt at all. Felt like a regular blood test.
    Still looking for my own liquid oxygen equipment so that I can get rid of my.supplier who will not fill my 20 liter as long as I keep it in the car. Every week my wife and I drive into.Boston to get it filled. I pay coin of the Realm for it. $28.50 per week, but worth it as I can get out and do stuff. I use the whole tank for outside work. Do your know what he sent me for a week ok portable oxygen 2c and 2d. Yeah, that won’t even last a day. What a nebish. He and his company know nothing about oxygen.
    One good thing we finally cleared out the cellar. 1 1/3 truck loads later we can actually see the dirt floor. Inherited the house from my parents, so still have lots of stuff to go through. My wife let me go into the basement with a mask on for the first time in 7years. (Before I get the oxygen, and we had just gotten married ).

    • Hi Don,
      Sorry it took me this long to respond to your comment. K and I went on vacation to celebrate my 48th birthday and our 25th wedding anniversary! Yay! It was 10 whole days of fun. And then we got home and I crashed to recover.

      You know, I’m actually starting to not dread ABGs (blood gas labs) because I guess I’ve gotten some REALLY great RTs who know how to use a needle!

      Do you have a looooooong oxygen tubing that you can hook up to your oxygen concentrator to string out the door into your yard? Our yard is really small. I can connect 2 7feet tubing to my 50 feet of tubing to making 67 feet of oxygen tubing to reach outside to my shed in the backyard. My o2 concentrator is near the back door.

      Congratulations on getting into the basement! I definitely would have used a mask too. I can NOT handle dust very well.

  4. My niece had a similar experience when she stayed with us over the labor day weekend. She is 8 and was very curious about using oxygen. She asked alot of questions and was really interested. She eventually asked if she could try it so I got a cannula for her and attached it to a partially full oxygen tank. I at first had the regulator set at 2 liters on the pulse setting but she didn’t like it so I put it on continuous flow which worked better. She tried it for a while and when I assumed she was getting bored and started taking the cannula off her she asked if she could keep it on. She told me the oxygen helped her breathe. I turned the oxygen back on and she wore her cannula until the tank ran out.

      • You might be right, that morning she was rushed around getting ready to stay with us. That and the excitement of staying over where she could practically get away with murder probably wore her out. She was alot of fun and her mom has had her stay over weekends more often. Each time she has shyly asked if she could wear “tubes in her nose” and have some oxygen. I guess she’s still curious. You are right, kids are funny.

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