Monday, June 24, 2013

Time to keep moving...

Been wanting to update y'all since my last blog.  Monday June 3rd Steve was released from the hospital!  We were full of every emotion; fear, excitement, happiness, frustration, etc.  We however knew once we got home that we would work it out, we always seemed to.  We came home to a clean house thanks to a great group of friends & with the help of them got all the medical equipment organized right away also.  

Feeling the combination of totally unprepared and totally prepared we tried to stay calm, on the way to bed however Steve began to panic and feel like he wasn't able to breathe.  I tried to settle & comfort him but without success and eventually called for the ambulance.  In this situation it is better to be safe than sorry and after 15 minutes I had 15 guys standing in my room.  I kind of blushed and then said, "uh there are a lot of you, anyway we can have just one person check him out."  Turns out his oxygen was fine (97) but his blood pressure & pulse were through the roof (typical anxiety attack).  The EMT were both so nice & stayed with us until Steve felt more comfortable and stable.  

After that little "scare" and the fact that the pulse-ox reader my mom ordered us wasn't delivered yet  I went to buy a back up pulse ox reader.  (For those who don't know what a pulse ox reader is---it's a reader you put on your finger and it reads what your oxygen level is & what your heart rate is).  This has been our biggest tool as any time since being home Steve has felt uneasy we put the reader on him to let him know how he really is doing.  I would recommend peace of mind to anyone so if you are an pALS or cALS (person or caregiver with ALS) and know a trach is in your future go ahead and plan to get one. 

Now 3 weeks being home I feel comfortable saying we are "settled" & "adjusted".  It was a hard process for me personally learning to feel comfortable and prepared for all of the new caregiving responsibilities, balancing out Steve's anxieties, and trying to get him used to our normal organic natural made shakes, put weight back on him, etc.  I at first felt a bit like I was going to go out of my mind but I have to admit a lot of my stress was silly.  

Our first day out of the house just happened to be the same weekend my old college roommates surprised me & came to visit for the weekend.  It was so nice to have the three extra girls here to help me for our first adventure out.  A friend of Steve's (Matthew Moore) put together a fundraiser for Steve, a golf tournament at St. Ive's so it was nice to be able to go swing by; see, thank everyone, & catch up for a little bit.  It was such a great first trip out because not only do the funds mean the world to us (especially now) but how cool is it that Steve's first trip out was him being surrounded by so much love & support!  





Side note---can I just say what a treat it was to see my college roommates; Jen, Ali, & Cori.  Those girls & I have been through so much & it was great that even after 3 years it's been since we've seen each other that we were able to pick up like no time was missed.  That's a gift to have with friends & I'm blessed the girls cared enough about Steve & me that they wanted to come visit & pitch in to help any way they could.  I of course (like I do with anyone that hangs around me long enough;)) put them to work  & they were great help!  



Since leaving the house Steve & I have picked back up on our normal "get out & about" routine.  Running errands, walks, sitting on the back porch, movies, visits, etc.  Getting out as much as Steve can handle it.  The thing is before this hospitalization Steve & I traveled a lot because it kept him going.  He does better when we aren't just sitting at home.  We kept busy to keep Steve going & to keep having fun & make memories.  After this hospital visit we didn't know what to expect or if we would be able to have that back.  The first 2 weeks were a little difficult because of that reason, but once we left the house and realized that again Steve does better out & about things began to fall in order.

We had some visiting nurses come help us transition home but as their time runs out & we learn that we don't qualify for any in home nursing care we are even more motivated to get back into a routine of being on the go.  Steve & I had a long much needed and a little difficult conversation about important decisions for the future.  One conclusion was that although we will not be able to travel as intense as we have in the past we will continue to travel as much as we can.  The prospect of this makes us both excited and full of hope. 

Steve has never been one to allow ALS to stop him from doing the things he wanted and I knew this would be no different however was unsure of how much he "could do".  I'm so proud of his fight & determination.  It never ceases to amaze me that just when I don't know if he still has it in him to get through the next challenge that ALS hands he does it with stride.

I have learned a lot through these 3 weeks that I am grateful that I am constantly learning about myself and life through this whole "experience".  I am reminded that I can handle things and shouldn't doubt myself, I am stronger than I give myself credit sometimes.  I am also reminded to let go of the "small stuff", when we were home I was so worried about who was coming and at what time, that I let the visiting nurses and visits from friends overwhelm me. There were plenty of other "little" things like being "on time", having everything in perfect order, etc bother me.  I often get "preachy" about not sweating the small stuff & here I was sweating all the small stuff.  Grateful for the reminder to chill out ;) 

There have been so many people reaching out to help financially & with things around the house. From the friends in my home town who did fundraisers for us (Kate & team doing the color me fun run, Kylie doing the yard sale, & Jen selling candles for me).  Also, thanks to everyone who helped Steve & I get his eye gaze up and running.  He is slowly getting used to it & hopefully soon will be a pro. :) Another special thanks to team Gleason for hooking us up with this gadget! 


Another side note driving home last week, Fox 5 called and wanted to do an interview with us about our story and our response to the 790 radio controversy.  We of course are always glad & willing to share our story & always hoping that anything will help spread ALS awareness!  check out the interview :)

All in all I have to sum up saying that I am so excited and relieved that we have reached "settled" status, that we are done with "home rest" & that we have begun planning plenty of trips. :)  Also, to all those who have asked---we are okay & love visitors.  So please text & make plans & if I don't text you back odds are I got side tracked so text me again :) Your continued support & outreach is amazing & we are forever grateful.  Each of you have a special place in our hearts.  

Lots of love, enjoy every minute of life & Just keep swimming. ;) 

4 comments:

  1. I have been keeping up with you two for quite awhile once I found out who you guys were through Facebook. I commend both of you with the strength and love you both have for one another and life in general. Thank you for bringing smiles to me and my family and setting a perfect example of what the human spirit can do.

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  2. Hope- love your blog and your attitude. I also have a wonderful husband, also Steve, also with ALS (diagnosed in Feb. 2011.) It is a journey unlike any we ever imagined, but there is also beauty we didn't anticipate and joy hidden inside the sorrow. Bless you both!

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  3. You are so wonderful....I hope you guys have the best time ever traveling. I always think of you when I burn sage...that's my prayers for you. Best of luck and much love.

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  4. your blog and facebook entries are so inspirational...I too have a husband with ALS....diagnosed Jan 2012....we havent faced some of your challenges yet but I pray for strength for all of us in this situation...

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