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. ;) 

The roller coaster ride that is ALS

I am way beyond over do for a blog.  For those of you who are unaware while visiting family in PA Steve began feeling very sick we cut the trip a little short and immediately made a doctor appointment for when we returned to GA.  Upon going to Steve's doctor he looked at us after checking Steve out and said, "You need to go the ER, Steve has aspiration pneumonia."  

Of course the words Pneumonia & ALS together aren't something you want to hear.  Obviously scared but not truly understanding the extent of the pneumonia we came to our favorite hospital Emory Johns Creek on May 9th.  Here we are June 2nd still here & it has been an up & down emotional roller coaster since the minute we walked in.  Wanted to share a bit of our journey for those who don't fully understand just how adding any other health complication to ALS can be deadly.

Upon arriving they informed us Steve had an extreme case of the aspiration pneumonia.  For those who don't know what the aspiration part mean---it simply means something that Steve has swallowed whether it be mucus/food/drink/vomit/etc has gone to his lungs and settled there.   We were full of nothing but questions at this point.  We thought it had happened when Steve had gotten sick from a tube feed 2 weeks prior how could it be an extreme case by that  point and the longer we stayed the more answers we received.  They began treating the infection right away with strong antibiotics and breathing treatments.  They got him on a healthy feeding routine that his body was accepting, and began what we thought was the process of recovery. 

We had a pulmonary doctor  visit and suggest that he thinks Steve's ALS had progressed enough that it was time for him to get the tracheostomy done.  Of course Steve & I both are thinking he is
 not ready for that & I in a simple and nice way tell him to leave.  The morning of May 14th Steve woke up in respiratory distress.  I have never seen him have such a hard time with his breathing---I immediately call the respiratory team to come.  One of our favorite Joyce came and did the NT suction (Suction through nose to lungs) on Steve which he has been getting to help get some of the secretions out of his lung. His reaction and her concern made me immediately call Steve's parents to get there right away.  Joyce went to call the doctor and nurse to come in the room and at that very moment as I was reassuring Steve he was okay and he was looking at me with scared eyes, they suddenly rolled in the back of his head and he became unresponsive.  A lot is a blur but I know Steve's parents, doctors, nurses, etc all come running in the room and next thing I know I'm listening to them struggle to intubate and put him on a ventilator.  The same doctor that I told to leave as he didn't know anything about Steve was the same doctor who had saved his life and came to hug me after to tell me, "We got him in time--he will be okay."  They obviously say getting off the vent for an ALS patient is always tricky. So they began aggressively weening him to assure his body didn't learn to rely on the vent and still did some work.  

Steve was doing so well so May 17th he got off the ventilator.  He was doing fantastic breathing on his own with minimal oxygen support.  He was smiling, talking, and able to cough up the residual secretions he had remaining.  We were so excited when we were leaving the ICU the 18th to head to a regular room.  Steve was so strong through this after he asked what had happened and I explained it to him, we immediately learned to communicate in a new way & he was still smiling & squeezing my hand saying he was ready to beat this.  

Sunday morning May 19th Steve & I had just finished watching church online and we were talking about how excited we were to see our dogs in a couple days, because according to doctors we were headed home very soon!  Suddenly with no explanation Steve reported he was feeling short of breath, got the nurse we hooked him up to a pulse ox reader it was 94 so we called respiratory.  Before anyone could even get back Steve looked at me and in the clearest voice he has used he said, "I love you & I'm so sorry if I can't beat this."  Suddenly his eyes rolled in the back of his head and he again became unresponsive.  I ran out screaming this time, and again in a blur the room is full of people and machines trying to get Steve stable, I black out for some of the chaos after hearing them say they no longer had a heart beat.  The next thing I remember is sitting in a chair with a nurse holding me as I cry hysterically and asking her if he's okay.  She said they were working but as of now he had a heart beat, I stand up weak knees and all and follow them as they wheel him to the ICU again.  Thankfully in the blur I was able to get Steve's parents to be there and right as I heard them paging a code blue to Steve's ICU room Steve's mom grabbed me so I didn't fall out of my chair again.  I hear them getting the paddles & saying clear when a doctor makes us go to a conference room.  Hearing him tell me, "We lost him & we won't be getting him back,"  was an unacceptable thing where I then yelled for him to go fix it.  I may or may not have added some colorful words during that, reports were all different on exactly how I worded that.  It felt like forever but they finally came back and reported they had him stabilized.  We all rush immediately to him and again I'm looking at him with such awe of his fight and spirit that he made it through another respiratory failure and is still alive.  

I immediately demand answers of everyone without a logical explanation for hours.  They are having me sign all kinds of paperwork for a central line and other consents and all the while still not knowing will he recover from this, is there brain damage, will he be able to breathe on his own again, etc.  The remainder of that day they have him heavily medicated so he can rest while they continued to evaluate him in every realm.  As I sat in that room I cried the entire rest of that day and night and kept thinking of how amazing of a feeling it is to know that when he knew that he was taking his last few breaths he still was able to muster up the strength to tell me he loved me.  My emotions were so mixed; I was so heart broken that he was back in the ICU, back on a ventilator, & that he had to experience so much trauma but also so overwhelmed with gratitude that he was still alive and with me.  Needless to say I didn't sleep much that night as they were in working on him through the night and lots of our favorite hospital staff stopped in to give me love.  

It was then that I really relied on our support system to lift me up with all their prayers, love, kind words, & support.  The cards, the messages, the emails, the phone calls, the facebook shout outs, the photos of Steve, the viral reaction of his video, etc.  All of that helped me get through the next few hard days of watching him be so confused & scared of how he ended up back on the ventilator.

The morning after this horrible day the doctor and respiratory team both talk to me again about now the absolute necessity of the trach.  I am tearful with both the doctor and respiratory therapist and overwhelmed with the feeling of responsibility and regret that I didn't listen to his first encouragement to get the trach.  They all tell me that it was only fair to Steve to give his body a chance to see if he could go without and that also with him doing so well they had high hopes he wasn't in desperate need.  They reiterate that most people who end up with a trach are usually doing it because there is no other choice.  They explain that without the trach if they were to remove the vent they didn't for see him making it through the week but with the trach they can ween him faster and assure they can keep the secretions from blocking his airway.  Now Steve & I have had these hard conversations & even happened to have completed an advanced directive with the social worker 3 days prior. So the answer was obviously yes.  I however, was so heartbroken that Steve didn't get to make the decision on his own.  

They decided to give his body a few days to rest before the surgery because of them having to resuscitate him & schedule it for later in the week.  The days in between I would try to explain to Steve in between moments of him being highly medicated what was going on and would get some positive reaction to him understanding, but it was extremely difficult to know for sure how he was going to respond.  The surgery itself went without any problems---they all said he was a great patient for a trach and it actually looked pretty. After his surgery we sorted through medication reactions, anxiety, & sadness got him weened off the ventilator again and on Saturday May 25th he was finally alert enough to ask me "What happened?"  

As I explained to Steve all that had gone on in that week after a few tears he was able to tell me, "Okay well guess we will learn how to live this way now."  He accepted it so well and was encouraged as I showed him all the love and support he had been receiving.  It's amazing how in sync Steve & I actually are as far as communicating.  It's obviously a frustrating experience to go from being able to talk and having ALS take yet another thing away from you and rely on my lip reading skills (while in the hospital that is thanks to Team Gleason & Elizabeth Chopton we are set up with some awesome equipment at home to help Steve be able to still communicate the way he likes to).  Despite some frustrating "wait what" times we have really worked out our own communication skills. 

As of today we are in a regular room just waiting for them to say for sure if our discharge date is tomorrow or Tuesday.  Steve has done well with speech he is able to use the Passy Muir (speaking) valve to say some words & they say as he continues to use it he will build up his strength.  Steve is allowed to swallow some thickened liquids & some special ice cream which is a blessing as some trach patients aren't allowed anything by mouth.  Despite some understandable anxiety Steve has handle this with the same grace he has everything else ALS has handed him.  In fact he made it through all last night & today not even needing to consider any anxiety medication (he has a bad reaction to most of them anyways) and is very peaceful.  I have learned trach care in every realm---cleaning, changing, suctioning, etc & feel very confident that I will be able to take good care of him at home. 

Reflecting on all that has happened I have learned so much both medically and emotionally. 

For starters, knowing how much I love school despite student loans I will probably somehow end up in the medical field after this.  I am so comfortable with taking care of these situations and am fascinated to continue to learn more.  I have learned a great deal about Steve's body & what ALS is doing to it, how to read his body, and how to work with him.  I have also learned to accept help this month.  Normally when people would ask me if I needed help with the exception of close friends helping me clean or bringing me a supply here & there, I would typically turn people away.  I've learned that not only is it okay to accept help but it also allows those that are providing the help to feel good and like they are doing something.  I never had any doubt that Steve & I are loved & that we have an amazing support group, but the way that all of you whether you have actually met us or not came together to support us has been incredible.  It's the most encouraging and amazing feeling to have so many people care about us.  I know I always say that I can't put into words how much it means because it means that much, however, since I'm working on my writing so I can finally finish this book I've been working on I am going to try.  You know the feeling of someone remembering something you like that you only mentioned in conversation & them surprising you with it + the feeling of going on an amazing vacation to somewhere you have always dreamed of going + seeing a friend you haven't seen in a really long time + the feeling you get when you see your dog after a long days work + when a stranger tells you that you look pretty today when you really didn't even get ready that day + getting to hug the person you love after a vacation + getting a big job promotion= how amazing your love & support makes us feel.  :)  I never want to hear another thing about people saying there is no good left in the world, because we are living proof of receiving blessings on an hourly basis sometimes not just daily.  There is so much amazing & good in the world & if we all focus on it & spread it maybe one day there will be no bad left.  ;)  

I also want to add that Emory Johns Creek has been amazing of course spending close to a month somewhere you won't be happy with everything but after working in a hospital and having family members in hospitals, I will say this has been the best hospital visit I've ever seen.  They all put up with my melt downs, my extreme OCD about Steve's care, my pestering to learn things, my excessive questions, & have shown us love more than it just being a job but that they actually care!  Honestly if you ever God forbid have to spend time in a hospital come here.  

Now I don't believe in coincidences but for sayings sake, I don't believe it was any coincidence that Steve has spent the entire month of ALS awareness month in the hospital.  Since Steve has gotten diagnosed he has made it his mission that he was going to bring awareness to this disease and he was going to fight it with every ounce of energy he has.  He always said he wanted to motivate others to continue to overcome hardships no matter what the circumstances.  Our following has increased a great deal while he was in the hospital and the video he wanted to go viral has gotten close to 8,000 views.  Our wedding video is close to 10,000 & HopeforSteve has close to 4,000 likes.  The fact that so many people care enough about our story that they share it is such an amazing feeling.  The love Steve & I have helps us through this crazy roller coaster & it is a blessing when we hear how it inspires others.  That's really what life is all about isn't it---Loving one another, encouraging one another, & helping one another when they really need it. 

Thank each of you for the support & prayers & to all my little helpers who have brought me goodies to the hospital, who have helped clean our house, taken care of our dogs, visited to lift our spirits, sent surprises in the mail, & who have reached out to help with all kinds of other amazing things.  You are all blessings & we are so grateful to have each of you in our lives.  If I haven't said this enough already we sincerely love all of you. <3  

PS:
Make this Viral for Steve
link to our news story with WTAE Pittsburgh Action News
Our story written in the daily courier a PA local newspaper