Oxygen is Good

We spent a lot of time this weekend dealing with “Home Health” people. Saturday morning we had a worker stop by from an agency that handles Pallative Care. After a lot of discussion, we realized that what we want isn’t Pallative Care but Hospice Care. I’m still a little fuzzy on the distinction – I believe Pallative Care is designed to manage the pain of stable patients, while Hospice is preparing for death, but either way the practical results of each mean that Hospice is going to be better and easier than Pallative in terms of getting help.

First on the list of that help is Oxygen. Last night a worker from the Hospice agency stopped by and dropped off an Oxygen machine. It’s not quite what I expected… I was expecting either a small pack that strapped to my waist or something, or a device involving actual oxygen tanks. What I received instead looks more like a carpet steamer; We fill it with distilled water, and it provides the oxygen through the usual tube and canula that I used in the hospital.

IMG_20171212_102042

Using the home oxygen canula

It’s only been one day, but the oxygen has already been a giant help. Just the other night I struggled trying to sleep, because every time my concentration dropped my oxygen would drop dangerously low. Now that I’m ensured of at least a steady supply of oxygen, I can drop my attention enough to get some actual sleep.


We’ve had several guests in town lately, which has been great. My father’s been here a few weeks, and he’s been great about helping with practical things… helping run errands, take the boys out of the house, things like that.

My best friend Mike Armstrong arrived here over the weekend, and that’s been so great. I don’t see get to see Mike very often, as he lives in Utah, but he’s my best friend in the world and any minute I get to spend hanging out with him, even while I’m this sick, is a delight. The hours we’ve spent watching terrible movies and playing bizarre video games with my kids have been a great distraction from what’s happening to me, and I always feel better when Mike’s around.


In terms of strategy, we’re still pinning all of our hopes that MD Anderson down in Houston has some kind of treatment that will do something. So far we’ve been unable to find any treatment that even slows down this stupid lymphoma, which is pretty crazy. So we’ll be flying out of Kansas City on the 19th of this month. There is no pre-planned schedule of what’s going to happen once we’re down there, so I have no idea what to expect. I’ve booked everything for a return trip that weekend, but we could be staying anywhere from one or two days to several weeks.

Obviously I’d prefer to be home for Christmas so I can spend it with the boys, but a quick trip to Houston also likely means they have nothing for me, so we’re just gonna have to see what happens once we get down there.


Lastly, I finally put up the fundraiser for the boys. I hate doing this – asking for help is humiliating enough, but asking for actual money runs against all of my instincts – but the boys will need help when I’m gone, and they will always come first.

While donations are obviously hugely appreciated, you can also just share the link to people you know. I’m terrible at getting the word out and social media in general, so every person you can share the link with is a help.

Link to fundraiser campaign: https://www.gofundme.com/edhigginsmemorial

Thank you everyone. Please feel free to leave any questions or comments below.

 

4 thoughts on “Oxygen is Good

  1. I’m a hospice nurse 🙂

    Both palliative and hospice provide multi-disciplinary comfort measures. The distinction between the two is that palliative care is often in conjunction with more aggressive therapies (chemo, etc) and hospice tends to focus on comfort vs cure. Having said that, you can graduate from hospice and it is welcomed. So I’m hoping that your trip to Texas will yield some good options, and you’ll kick hospice and your O2 tank to the curb.

    The McGomez team is rooting for you.

    Like

  2. Pam Armstrong says:

    Ed, I am so grateful that Mike has such a wonderful friend as you. I’m glad he could spend a few days with you. Your friendship is very special and means a lot to him. You and your family are in my thoughts and prayers. I pray our Savior, Jesus Christ will bless and comfort you as you fight this and seek for hope and answers in Texas. May our loving Father bless and keep you and your loved ones. Pam Armstrong (Mike’s Mom)

    Like

  3. Michelle says:

    Sending you good vibes and thoughts Ed. Update us when you’re in Houston when you get a chance. I’m so glad you’re on oxygen, it makes a world of difference. Sending much love to you all.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s