When impermanence is your reality - Where Steve's health is today

So if you follow us on any social media you know we had a recent hospital trip.  It was brought to my attention this trip, that I probably haven't fully explained in one place where Steve is currently health wise, so allow me to attempt to fill in all the blanks here.  


Steve was diagnosed in August of 2011, after a year of misdiagnosed symptoms.  Upon diagnoses he started falling more frequently, and was loosing a lot of his muscles to atrophy. Late 2012 Steve had a feeding tube placed, as he was starting to choke more, that became infected the same day (insert infections that NEVER left). It was April of 2013 that he went into the hospital for pneumonia where he coded twice, actually died and was resuscitated once, that ended in him getting an emergency tracheotomy.  At the time of surgery Steve was on his decline to below 100 pounds.  We had no idea then what exactly was going on with his stomach, we assumed he was using most of his energy to breathe and that was the main cause of his weight loss.  Steve was not ready for the ventilator more so mentally than physically at that time, so he waited until October of that year to really begin to explore the vent.  He started on bi-pap settings, and quickly reached the point by 2014 where he needed full ventilation.  

During all of this Steve began vomiting most things that he would get in his feeding tube.  We initially thought it was just he couldn't tolerate formula or traditional tube feedings so I began to make his own food.  In early 2014 after a hospital visit where I expressed my concern for Steve's vomiting, then aspirating, developing pneumonia, and being hospitalized pattern we were in.  He was rapidly loosing weight.  Spring of 2014 Steve reached 67 pounds and I couldn't even get water into him, so I took him back to the hospital after only being home one day in between and I said, "We aren't going home without IV food." 

That's a very brief back story but currently Steve sits at 150 pounds (although maybe 30 pounds are the fluids his body holds), and I will speak on where we are currently.  Steve's stoma (Trache site) has stretched he has the biggest size trache (10) and a hole big enough you could stick your pointer finger in it along with his trache (don't worry no one does that).  So many people ask me how that happened?  It was the perfect storm : getting trache, immediately followed by loosing drastic weight, violent vomiting with aspiration happening, followed shortly by gaining significant weight, receiving all of his nutrition via IV (it may have saved his life but it only goes so far for skin integrity), and the use of peroxide (I should write a post on this alone before we knew better we were told peroxide was good for trache care, peroxide is terrible for your skin especially broken down skin-please never use it); so all combined led to a very stretched site internally and externally.  

2 years ago Steve developed anemia of chronic disease, again TPN (IV food) while it sustains him, it only goes so far. A year and a half ago Steve developed his first pressure sore on his left sit bone after being on the gurney in the ER for 6 hours.  It was set back exactly a year ago while going to a procedure and it became a stage 4 (all the way to the bone).  As of this hospital visit his wound is OFFICIALLY HEALED! Yes we are celebrating but also very well aware that the way a 4 heals means that tissue is very fragile and a recurrence is almost expected.  Regardless though, he has proven he can heal!

Also a year ago Steve's right lung began collapsing one lobe at a time.  It's suspected this happened because of constant pneumonia and turning off his wound.  So there we were with a stage four wound on his left butt, and a fully collapsed lung on the right side.  Normally you would want to be turned off of either of these, but that was no longer an option.  Steve has championed through these.  His trache stoma isn't the only "hole" in his body that has stretched because of extended length of use and the way his skin integrity is compromised. His feeding tube site and catheter site are both using the largest sizes and still leak.  

A year ago I began to finally get Steve's stomach to tolerate little bits of food (he has a G/J tube so I skip the GI and go straight for the Jejunum).  Since then, the times he can tolerate foods his infections do better, he doesn't need blood transfusions, and over all he has more energy.  I wouldn't be surprised if it also played a role in his wound healing (also our IV team increased vitamin C to help as well).  This week since being home is the first his stomach has tolerated foods since getting his gallbladder removed end of August, and for that I'm grateful.  Despite only getting roughly 80 CCs in him a day (broken up in 4 doses) that little bit at least builds his hemoglobin and helps him have energy to participate in his day.

Needless to say we are complicated so when we go into the hospital these days it is truly us just following theories.  We believe this last visit was mostly him needing a little antibiotics and extra TLC to fully recover from that gallbladder being removed.  I was worried he was reacting to his TPN, because he would have episodes at night only, where he became very anxious with tachycardia.  Which comes first the chicken or the egg here, is it anxiety or the heart.  Still unknown, truly, but this visit all of our theories were proven wrong, and somehow he just adjusted.  If you know anything about human anatomy, then you understand that Steve's heart is vulnerable (for more reasons aside from living with complications of advanced ALS) because of the way his lung has collapsed.  Your lungs protect your heart, and slight tachycardia is his new norm, so when it goes up we are talking the 150's.  

Of course there are hundreds of reasons for increased heart rate and Steve obviously has a lot that could be the cause, but for now we are thankful his body sorted out whatever it was.  Sometimes we have to admit we don't understand what's going on in Steve's body; which isn't an easy thing to do for doctors or me, but we have to.  So that's where we are.  The impermanence while there for everyone, that's already increased from a diagnoses like ALS, is really really real in your face these days (our face).

So if you're reading this and you maybe haven't spent a lot of time with Steve over the past few years because life just keeps you busy.  We understand, we have no hard feelings, but allow this to be a friendly reminder to come now.  His well-being requires naps but right now it also requires interaction with people aside from just his wife, immediate family, and our aide; so please come. He obviously can't tolerate a party full of people, so when you message me don't be surprised if I throw out dates where he doesn't have any visitors, rather than taking the last minute "can I come today". :)