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