Scared to go to sleep.

Wanted to write a few updates & also a therapy blog. May be a little on the heavy side---but it's needed.

For those that follow us know that Steve's feeding tube had gotten infected.  I noticed it a few days after writing the initial blog that there was a lot of seeping & it had an odor, I knew right away that wasn't normal.  Steve also the day before the odor began had gotten very sick & still wasn't able to eat and had very little energy.  All added up to a phone call to our surgeon. After a trip to the doctor on Monday they said he has a local low grade infection and they started him on antibiotics & we had to wait another 48 hours to use the feeding tube.  Because of these complications Steve has gotten very skinny & weak, so now first day using the tube again as the infection is getting better we need to strengthen him back up.  This process has def been a difficult one and we appreciate everyones love & support through it.

We are also very saddened to hear that a dear friend of ours Dan Soyka who was also battling ALS had passed away in his sleep last night.  We became friends with Dan & his amazing wife Lisa after we found out we had such similar stories---young newly weds facing just being diagnosed with ALS.  We have gone to visit them in Florida & really enjoyed spending time with them.  It's amazing how quickly you can bond with someone when you have so much in common.  Dan was too young to die.  This disease is ruthless & needs stopped.  I can't believe that the FDA still drags their feet about ALS, I can't believe that as a society we haven't funded & supported the disease enough to find at least a treatment.  There is no harsher disease in the world, and that's a fact.  So why aren't we paying more attention.  My heart aches for Lisa & Dan's family & I want to be in Florida with them all to hug them.  It's such a tragedy. You can send warm wishes to them here & please remember them all in your prayers.

So here I am Steve is asleep & I'm scared to sleep.  I have explained to people before my fear of going to sleep with him sometimes as when a mother has a new born & they want to watch them through the night to assure they are breathing.  Well, I find myself doing this with Steve often & even more so tonight.  I'm sad at the idea of what ALS is capable of & sad that so many amazing people have had to suffer with this disease & sad for all the people who have had to watch their loved ones suffer with such a horrific disease.  I pray & do yoga & meditate to help me with the fear because I know it's not healthy, but some nights are harder than others.  It wouldn't be fair if I only shared the positives with everyone because I want to help make everyone aware of how harsh ALS is so that maybe just maybe the right person will see this & be the person to find a cure/treatment.

So as far as Steve he is finally getting his appetite back some, we used the tube today with some success, & he is SLOWLY gaining strength.  We are celebrating every single improvement because with ALS you just never know if once something gets so weak if it will improve.  So every small improvement is so important.  True meaning of celebrating the small things.

I do want to add some positives.  A special thank you to some very special people.

First a general one to every one who texts/messages/calls to check on Steve.  Your concern means the world to us.  Thank you for caring for us, supporting us, & all the prayers & warm wishes.


Thank you to everyone who has donated or helped us financially.  Financial burden is inevitable with ALS so thank you to everyone who helps ease the burden some.

Special thanks to our dear friends Raymond & Erica for taking time while visiting with their families to come & visit us & bring us cheer.  They are celebrating their 10 year anniversary & because Steve is too weak for us to go to their party they came to visit us.  Very thoughtful & means the world to us.  They are like our family & we are very grateful for them!

Because of Steve's condition we didn't have any plans for Valentine's day which we celebrate love everyday but it's always nice to celebrate the day (side note despite Steve's rough 2 weeks he got me flowers delivered.  So thoughtful & sweet that he put forth the energy since he has so little right now to do something extra to make me smile:)).  Because of that our friends Danny & Jen came & cooked us a yummy Valentine's dinner.  Again so thoughtful & we are so blessed to be surrounded by such love.

Again another thank you to my in laws for bringing me supplies & helping with Steve as I need.  Very very appreciative to have them close by & that they haven't gotten annoyed with all the errands I've made them run! 

Also another good note---because of how rough the past 2 weeks have been my Mom is coming to visit us....She will be arriving Monday.  Sometimes all a girl needs is her momma.  I know having her here for a few days will help refuel me & I am very grateful for such a supportive & caring mom.

Again thank you to everyone who cares & supports us & helps us spread awareness about this awful disease.  If you think of it please share with someone about the disease, donate to an ALS organization or a pALS (person with ALS), or reach out to someone you know that has the disease to send them a warm thought.  Please continue the movement & I pray it makes a difference.

Thank you for letting me write when I have a heavy heart.  Sending everyone lots of love & remember to tell everyone important to you that you love them.  You never know when it will be the last time you see/talk to them. Make sure they know how you feel.  

Steve's surgery

As most of you who follow us know Steve had surgery Monday Feb 4th to get the diaphragm pace maker placed in as well as the peg tube for his feeding tube.  When making the decision to get the pace maker the feeding tube was optional.  I have been wanting Steve to get the feeding tube for close to a month due to some recent weight loss but wanted the decision to be his.  With guidance from other pALS (people with ALS) & caregivers & prayers Steve decided to go ahead and get it.  Because Steve had both procedures done on Monday he is having some extra pain but I couldn't imagine him getting the pacer without the feeding tube.  He has been in so much pain & has not recovered enough from his surgery to want to eat & thankfully the feeding tube has allowed me to get some much needed nutrients into Steve.  It's also been an excellent resource to get medicines/vitamins/etc into him as pills are currently (previously were as well) difficult for him to swallow.  

For those who are unfamiliar with either of these procedures the simple not so medical way to explain it:
The Diaphragm Pace Maker (DPS) helps keep the diaphragm going & is essentially used to help prevent a tracheotomy in the future.  It isn't a cure (because unfortunately that's not here yet) but it does help improve the quality of life.  It is like a work out for the diaphragm & unlike other muscles that can weaken when ALS patients workout the pacer doesn't make the diaphragm weaker---it makes it stronger.  The wires are connected to both sides of the diaphragm & the wires then plug into a box that helps pump the diaphragm.  The box isn't always attached so he has the option to be able to go without it if he wants. The wires connect to a connector holder that sticks to Steve's skin.  The wires are covered with gauze & tegaderm to protect the wires.  These all get changed every 3 days or so & can be covered to shower.  
The feeding tube I think is self explanatory but it helps us pump nutrients into Steve's stomach directly.  We began using it immediately and although it's very uncomfortable for Steve right now I'm very glad it is getting nutrients into Steve.  

I'm assuming these are going to bring some extra expenses with all the extra things we will need---but I will be on the hunt for the most cost effective way to implement this new change--with help from others & research I will def share whatever the best "cheap"way to stock up on supplies when I find it. :)

So Steve is still in a lot of pain but little by little he is getting better & despite that at this moment I would recommend it to any pALS.  Every time Steve has been connected to the pacer despite the initial discomfort he is able to breathe with more ease & the feeding tube goes without saying; I've been trying to fatten Steve up & this helps more than the shakes I've been trying to push on him.  

Dr. Kharsarinia at Piedmont is who did the surgery & he & the all the nurses were amazing.  Just a heads up to any pAL considering this---make sure you or your care giver talk with the anesthesiologist if your loved one is having difficulties with phlegm.  Unfortunately phlegm is a huge part of Steve's battle with ALS and after the surgery he is having some extensive issues but they were able to make sure he didn't have any issues during surgery because they were aware of his struggle with this.  

I want to thank everyone for the prayers & well wishes.  Also, thanks to my in laws coming to the surgery & keeping me calm & stopping over once a day to force me to take a break.  It's been a rough week as it's never easy to see the one you love miserable but I keep trying to remember the end result (I also keep trying to remind Steve of that---but who wants to hear that when they are miserable;)

I will give more updates as I have them as well as any tips we find through this new step.  Thanks to everyone that has been through both procedures for giving us suggestions, tips, & encouragement.  

Please continue to keep Steve in your thoughts as he continues his road to recovery.  

On a complete side note---seeing that we will be sort of "cooped" up for a while don't be surprise if a random "trip" pops up.  Y'all know that Steve & I don't like staying home for extended periods of time. ;)  

Lots of love.