Hello! My name is Heidi Good Swiacki. I have been married to Steve for 25 years, which has been filled with laughter, trust and love. We have 2 great kids, Ashton 22 and Chris 16. I have ALS, aka Lou Gehrigs Disease. I was officially diagnosed March '05, I was just turning 45. This blog will be about a myriad of topics. I will share my ALS story which will hopefully encourage others. It will show that quality of life comes in many forms. I have to tell you up front that there will be some spiritual references. Don't be afraid or turned off by that. Since I have had ALS I have seen many miracles. Let's be realistic, who can be a happy, non-verbal,ventilated quadriplegic without Faith? I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required! :)

Heidi passed away 3-25-13 :(

August 4, 2013

Hello, Steve here. To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives and how we as a family are learning to live on with Heidi's memories pushing us forward. Topics covered will be geared towards the affects ALS has on loved ones.

Friday, July 19, 2013

The BIG Event

December 15, 2012 our daughter Ashton graduated from CSU Sacramentoo. An undergraduate degree in Child Development. For now she is going to take a year off, Skiing for Sacramento State and being the Team Coordinator. She will still be a server at Bar West but is also looking for a job as a nanny. After a much needed break she will jump right back in for her Masters and Credential. (Heidi began this post)

Ashton waving to mama with pride
To best describe the planning process for a 20 hour road trip with a non-verbal quadriplegic on a battery operated breathing system is nothing less than remarkable. I often described Heidi's ability to plan to that of a duck on calm water, on top she was always composed and matter of fact, below the water was another story, churning at a frantic pace.

When Heidi told me that we were going to Sacramento, I said are you sure you want to subject yourself to this, it will be really hard on your body and me both. Her response was, a few ache's and pains pale to the opportunity to see her baby girl graduate and that we needed to figure how to to do this, not talk about why we cannot. That was Heidi, direct, forceful and full of confidence that we could do this together.

As I worried about the cost of our making this trip, Heidi had been working behind the scenes on grants. We were looking at 6 mos of caregiving money in our account (about 60K) and I was worried that this 72 hour trip would consume our dwindling care-giving funds. Never doing anything without a plan, Heidi had landed a $2000 grant which was a provided a sigh of relief.

Now that the finances were addressed,  we had to find a hotel that could accommodate her wheel chair and that would work with us to have our room set-up with a medical bed, oxygen, suction machine (this was key) a hoyer. Heidi found a company up in Sacramento called Marion Medical Supply 916-451-4461, they were wonderful to work with, they reserved everything we needed, did not ask for a deposit until the week of the delivery, they arrived early to the hotel room, set-up the bed, the hoyer...all we had to do when we arrived was get me a beer to mellow out and get Heidi ready for bed.

Next we had to get the van ready, I had the Ricon lift serviced, there is only one company within a stones throw that do this, they are Adaptive driving systems in San Luis Obispo, They always have a leadtime, so I had to make a reservation to get it serviced a number of weeks prior to our leaving. The drill has been, I drive it up on a weekend (sunday) they work on it Monday, I get a ride up monday evening after work to get it.

Next we had to get the van serviced, last thing we needed was to have any mechanical issues on a 20 hour road-trip...My biggest fear was due to Heidi's vent, it was battery powered, (each battery was supposed to last up to 8 hours) it was always the "up-to" explanation that scared me, The system had a cigarette lighter charger that we were able to power the vent with...So if the van had mechanical and or electrical problems, our lives would have been interesting if we had gotten stranded on I-5 somewhere. I had considered bringing our generator just in case.

We always use Olivera's repair in Buellton to service the van and it was serviced  a few days before we left.  My job was done for the time being, Heidi organized what she would need for the trip, food, cloths, towels, med's , she had made arrangements with Annie Wright (our nite care-giver) to travel with us. Annie was wonderful, she was very patient with me anytime I wigged out, which was often, but the stress was unbelievable on my end. Both she and Heidi did lot to keep me calm.

The day is here, one of the things I missed most were the trips our family took together. Heidi and I always had the "boy" jobs and the "girl jobs" Heidi always organized everything to be packed, I got the van ready and packed all of our luggage etc...My dad, Chris, Annie and I were in the van, we were able to get on the road by 11:00. 

I had been concerned about which route to take, as the road to kettleman city was always full of ruts, jumps and would have made Heidi miserable as it would have caused her to bounce around in the chair, Now keep in mind, the chair had redundant features to keep Heidi secure, we had a shoulder harness and belt system on the chair itself, this was followed by seat-belts that were part of the anchoring system for the chair. Heidi had just received a modified forehead system that had soft pads that were pressed firmly against each temple to help keep her head secure. 

It turns out that the route to kettleman was smooth as glass due to all the new construction and was very comfortable. The trip up went off without a hitch, the van ran great, the vent caused no problems. We had a great first leg of this road trip.

When we arrived to the hotel is when all hell broke loose.  Annie was getting out of the van, she fell very hard onto the pavement, after a few tense moments I helped her up and she was able to walk it off...Tough woman. Heidi was still strapped into the van as my dad, chris and Annie unloaded the luggage to bring into the room. It was not until I parked that van that we had our first heart-pounding moment. I started unstrapping her chair, a series of alarms went off on the vent...this was the solid loud alert telling me that Heidi was not getting air.

I am thinking oh my god, this is it. I was able to get Heidi out of the van (I playfully told her to hold her breath) which she smiled and blinked once...one blink meant yes...She remained calm as I started scrambling around trying to figure out the problem..Annie had to get the ambu bag (which is a pliable bag) that is hooked onto the trach opening. Annie breathed for Heidi as I got the vent working. We were able to hook Heidi back onto the vent and we made it into our room. We had already hooked up the second vent in the room to prepare for the transfer, as we started to lift Heidi out of the chair her alarms started sounding again, but by then we had her close enough to the bed, so no real stress at this point..we got her into bed, she got potty done, was fed, we gave her a treatment and all was good. She smiled as we got her computer hooked up so she could talk. All she said was great job and how excited she was to be in Sacramento. If you could have seen her face, she was radiant. This really made the trip up worth while..seeing how satisfied she was..you could see in her face she was saying na-na-na-nana that she knew we could do this....I smiled and kissed her.

Celebrity welcome
The next day, we start preparing for Ashton's graduation. The day itself was horrible, cold and raining..just one more thing for me to worry about...keeping Heidi warm and dry...Heidi slept until 11:00 that day, Ashton was having a graduation party/graduation party at her house...Heidi was so excited to see Ashton's home and meet her friends. We arrived at Ashtons and found that there were stairs that had to be negotiated to get into her home. Keep in mind, the chair weights at least 400 lbs..we had bought a ramp system a number of years ago, which really came in handy. As we set-this up, the rain made it slick, so I had a lot of fun getting her up the ramp as the chair slid and skidded trying to gain traction....Heidi was undeterred, smiling broadly as everyone crowded around her, she received a celebrity greeting by the 30 or so friends and family. 

Negotiating the stairs
The graduation was held at the cow palace in Sac. Very large area, confusing, rainy and cold. They were not really set-up for the handicapped, the security was extremely tight, we had to wait in line in the rain as we made our way up the ramp. Upon arrival to the screening area, we had to unload all of Heidi's bags for inspection..fun stuff...We arrived inside and got a floor seating arrangement, this part was set for the handicapped and was great.  
Love and Pride seeing our baby graduate
Heidi was able to watch Ashton walk into the graduation ceremony...again a smile so big I thought her face would burst. Ashtons Aunt Chris (Heidi's sister) had flown out from New Jersey , Heidi's cousin Carol made it, my dad and Chris. Ash got her diploma, her look of triumph (I did it and my mommy is here to see me) was glorious and again made the entire trip worth while. 

With Mama in her Sacramento home
Keep in mind, the vent was running on batteries, in the back of my mind I had worried about how long the batteries would really last, being paranoid, I brought the extra set-of batteries with me into the ceremony.

As we got the the van, the batteries started alarming, which meant we had x-amount of time left before we shut down. So scrambling, we got Heidi into the van and got her hooked into the car charger. No problem right? Well as we are leaving, the vent alarms were sounding again...As I pulled the van over, everyone as shouting advice as to what I should do, my dad and Ashton, I yelled to keep quiet so I could figure out what was going on...I never really did figure it out, I moved hoses around detached and reattached and it started working again...This would happen a few more times as we were heading back to our hotel. When we arrived, the vent went into complete shut-down, alarms and confusion. I looked at Heidi and it was a face of calm, she blinked at me once as if to say I trust you will figure this out. Annie had to get the Ambu bag again as we wheeled Heidi into our room. We got her hooked into the spare vent and all was good. I got myself a few beers after this one and proceeded to sit next to Heidi, we watched TV as I tried to figure out what had happened...I detached and reset everything and hoped for the best

The trip home as a reverse of the trip up...no problems...the vent worked without any issues, van ran great..Heidi smiled the entire way home

Aunt Chris and Cousin Carol

Setting Heidi's arms for comfort

Says it all, my dad emotional that Heidi was able to attend

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