Would an ICH Stop Us From Building our Shipping Container Home?

Not if Dave had anything to say about it 😉

The Longest Night Of My Life

The ICU is a busy place in the middle of the night. The nurses in and out of the room every 10 minutes, sometimes more often if Dave’s alarm started to go off.  There was a constant sound of paging, alarms, and more than once that long night, the sound of someone coding.

I tried to make myself shut my eyes and rest while Dave was resting, but the minute Dave’s alarm, or an alarm in the hall or a code sounded, my eyes flew open to make sure that Dave’s chest was still moving up and down.

At around 2am, I gave up on rest and just sat watching Dave and prayed and prayed and prayed; I begged; I pleaded; I bargained; I negotiated.  I would do anything, God. Just please don’t take him from me yet. We aren’t ready. We have so much we still want to do; adventures to take, a home to build, vacations, growing old together and sitting on the deck rocking together.  Please God, I will do anything…

And for hours, I repeated this conversation in my head, waiting for the sun to rise and marking off his second huge milestone – living through the night.

 

Google IS NOT Your Friend For Prognosis

Between the praying and watching Dave sleep, I did the stupidest thing ever – I Googled  Intracerebral Hemorrhage. At this point, the doctors hadn’t given us much information or a path forward, or prognosis, or really anything.  They were so skeptical and were not expecting a good outcome, and had pretty much stated that, and not much more to this point.

It took me but a minute to find out a whole lot about what ailed Dave – DUMB.  There was so much information, and 95% of it was heartbreaking. According to Google, Dave didn’t stand much of a chance either.

Would he wake up? – probably not.

Would he have lost more ability throughout the night? – most definitely, yes.

Would his brain have endured more damage from the hemorrhage? – what was left of the undamaged gray matter.

Would he be better or worse when he woke up? – most definitely worse.

Was he ever going to walk or talk again? – with aids and assistance devices, or even in a wheelchair.

Would he live? – there was less than a 25% chance.

If he lived, what kind of quality of life would he have? – Less than 3% of returning to 90% pre-ICH status.

Never, I repeat, NEVER visit WebMD while your best friend is lying in a bed in ICU and expect any reassuring information.  It took me less than an hour to learn my lesson. I put my phone away, and did not ever look again. Going forward, I would let the experts, Dave’s team of neurology surgeons update me on our path forward.  I couldn’t stomach finding the information out on my own, because according to Google, there was almost a 0% chance of our life going forward to resemble our life up until this morning.

 

He Out-Slept The Sun

Dave actually slept pretty well all things considered.  He barely responded for his constant monitoring and 3x per hour neurology assessments that were conducted throughout the night.  At around 7am, he finally started to rouse into a more wakeful state. The sun had been awake for hours, and for Dave, 7am might as well have been noon for as often as he sleeps in.  But considering what his brain and body had endured in the previous 24 hours, he deserved and needed every single minute of that sleep. I was just so thankful to see him waking up.

The minute his eyes opened, he sought me out, making eye contact with me and the look of, ‘This really happened, didn’t it?’ crossed his face and the panic set in almost immediately.  I didn’t even know what to say, except that I wasn’t going to leave his side and we were going to be okay. We would fight this together. I squeezed his hand and kissed his dry, cracked lips.  20 hours with nothing but a few ice chips by mouth, really dries a guy lips out.

My Tongue Was Bleeding

From biting it to keep myself from crying.  How could I stay strong for him, when I could barely hold myself together?  There was a constant prayer in my mind, ‘Please Jesus, keep me strong for him. Please.’

Oh, my sweet boy – I just didn’t have words for the heartbreak I was feeling, not only for myself, but so much heartbreak for my hardworking hero that was now laying ½ paralyzed in a hospital bed.  The fear in his eyes, and the panic in which he held my hand with were almost my undoing. Hang in there, sweet man. Don’t give up. We will do this together.

I couldn’t wait for the doctors to make rounds and give us a plan on what going forward looked like.  I had so many questions – my first question was going to be what caused this? And second – how do we stop this from ever happening again?  All those hours in the middle of the night watching Dave’s quiet breathing gave me lots of time to think and I needed to know why this happened.

I needed to know why and how this happened so that I could do everything in my power to make sure that it never happened to him again.  I needed a purpose, a path, a goal – I needed a plan.

 

A Day Of No Answers

Finally at around 10am, the doctors arrived for rounds.  The plan for the day was to take him for a cerebral angiogram and see what was going on in his brain.  If there was something there to repair, they would, but it would give them more of a clue as to what happened.  As they prepared him for his small surgery, Dave’s anxiety grew. Anytime you go into the brain, there are so many risks, and he was again fearful that he wouldn’t wake up.  The surgery was expected to take about 1.5 hours, and I took this time to take a shower and put on clean clothes that my daughters had brought. I am here to tell you, there is nothing that fresh breath and a clean pair of underwear can’t fix.  After my shower, I felt much lighter of heart and ready to take on whatever was in front of us.

Finally, they brought Dave back from surgery, and he had to lay completely flat for 6 hours without moving at all.  He was already so exhausted from everything going on, that he slept most of the time. About the time that he started to wake up, the surgeon came in to update us on what they had found.

Nothing?

They could see nothing because of the size of the blood clot taking up so much of the inside left quadrant of Dave’s brain, which means that they couldn’t tell us much at all.  They couldn’t see if there was a malformation in the brain that had caused the bleed, they didn’t see any weekend vessels that could have caused it.  There was no explanation for why my boy was laying flat in an ICU, with no feeling on his right side, unable to speak legibly. After the doctors explained this all to us, they said that we would continue to watch and wait for the next 72 hours and keep Dave in the ICU, because they didn’t think the clot was stable and wanted to be prepared in case he started to re-bleed.

I’d wanted answers – why this had happened and how to prevent it from happening again.  And the doctors had no answers. They didn’t know why it had happened in the first place, and they didn’t know how to prevent it from happening again.  I can’t lie, in that moment, I was angry with God.  No answers – just a spontaneous bleed.  This wasn’t fair.

 

Watch and Wait

And so we did what they said to do – we spent the next 3 days in the ICU, watching Dave and waiting for him to re-bleed.  Literally, that was what they were waiting for. During that time, they came in to talk with us about what Dave’s aftercare with discharge was going to look like.  Did we have a safe place that would accommodate his new limitations for him to go home to. We were so fortunate that while Dave had no feeling on his right side, he was able to stand, bare weight and walk.  He had maintained his strength on his right side, but no feeling. Another thing that they couldn’t explain, but we were so thankful for the small victory.

I clearly remember a comment that the Therapist Coordinator said to me on the second day of Dave’s ICU stay – he said, ‘You are going to advocate for Dave’s life, for his therapy, for his recovery, for his quality.  If you don’t advocate, his future is grim at best.’

Wow, powerful words, but words that shot straight to my heart.  I might not have a reason why this had happened, but I had a goal and focus that I could work towards to help Dave recover the best quality of life that was possible for him and us.

Finally, after 4 long days in the ICU, they discharged us to the stroke floor for 2 more days of observation.  It was while on this floor that Dave got terribly sick and they took him in for another emergency CT scan, hoping that he hadn’t dislodged the clot and started to re-bleed.  Thankfully, the clot was stable, and his body was just rebelling from all the trauma that it had been put through.

 

I’ll Never Leave Your Side

Through this entire time, I never left Dave’s side, sleeping in his bed with him at night, holding him.  The nurses brought me food, and except for when he was taken aback for a procedure or scan, I was with him around the clock for his entire hospital stay.  His nurses loved me because I took care of him, fed him, bathed him, making sure he was as comfortable as possible.

Finally, after 5 long days in the hospital, his neurologist decided that he would be okay to go home, since the sights and sounds of the stroke floor where causing him severe anxiety and making him physically ill.  All of a sudden, the reality of the journey that lay before us overtook me and the fear that I wouldn’t be able to give him the quality of care he deserved and needed caused me to pause. And then this still small voice reminded me – I am Dave’s biggest advocate.  If I don’t work hard to get him the therapy and help he needs, he won’t have the life he deserves going forward. That small voice was all the reminder I needed that while I felt completely inadequate and ill prepared to become Dave’s primary caregiver, this was the job that God had given me in this season of our lives.  I had a goal and a purpose – that my hero would talk, walk and feel again.

We arrived home on a Tuesday afternoon.  Dave didn’t even have any clothes to travel in, so one of the nurses found some disposable scrubs for him to escape the joint in 😉  We arrived home and he settled himself into the chair to rest while I started his shower and lay out his clean clothes. Our shower was upstairs, and this was our first attempt at stairs, but thankfully because he still had the strength, we were able to climb the stairs together and get him refreshed and rested.  The reality of the monumental task that lay before us became very clear.

Just Call Me General Advocate

Tuesday, while Dave rested, I spent the day on the phone scheduling speech, occupational and physical therapy appointments for Dave.  The therapy started on Wednesday, because I believed that if we didn’t get right into therapy, there was a greater chance that Dave’s brain would struggle with regaining what had been lost.  And so we started therapy, 3-5 times per week every week for 3 months. I was with him for every single appointment since he couldn’t drive, and pushed him hard during those sessions. I researched home therapy that we could do in addition to the clinic therapies, and Dave spent no less than 8 hours a day working his brain and body.

Getting better was his full time job.  Speech was, and still is the most difficult for him.  His brain struggles to put words together, to remember words that he has commonly used before his bleed, and still stutters when his is tired or stressed.  We read, we played games, we wrote lists, we spent hours and hours working on his speech therapy.  We also spent hours and hours stimulating the nerves in the right side of his body with sensation therapy so that he could regain feeling again.

His occupational therapist was amazing and actually used projects at our home as part of Dave’s therapy.  When he was strong enough and well enough, laying out our deck, installing with a screw gun the deck boards and stair treads was a huge piece of Dave’s therapy. What once would have taken him for a weekend, took him almost 8 weeks, working 6 days a week at it to complete.  Because he couldn’t feel his right hand, he had to watch so carefully everything he was doing.  His brain was also struggled with managing and thinking through the next steps of what he needed to do.  But he never gave up, even when it was so overwhelming, he persevered, and slowly but surely, he had a huge victory when he completed that project, almost 3 months after his bleed.

 

No Fear

A side effect of Dave’s bleed was that it affected the portion of his brain that regulates fear.  Situations Dave would have never put himself in prior to his bleed, things he would never of done were all of a sudden common everyday occurrences.  For months, it felt like it was my full time job to keep him alive, and not just because of his bleed, but because he became a daredevil.  I couldn’t keep him down, and he would badger the kids into driving him to the property when I was at work.  This pattern started just a week after his bleed.  He wouldn’t rest, but was so restless to get on with his life, with our home build that he would get angry if we tried to keep him from the property.  This made me so worried and anxious, but I just had to give him to God, and prayed constantly, God, please keep him alive today. 🙂

A couple of weekends after Dave got home from the hospital, my sister and her husband had come over to help me prime our metal deck railing and roof so that we could get it painted before the rain started and it rusted.  It was a slow tedious process, because we were doing it by hand, with paint brushes. This was driving Dave crazy as he looked on, but I didn’t know how else I could accomplish this task.  It took us all weekend just to get the railing’s primed, and had planned on painting it next weekend.

 

Well, on Monday, while I was at work and just 2 week’s after Dave’s bleed, my daughter told me that Dave had asked her to drive him to the property, but she had to go to work so couldn’t stay with him.  When I got off of work, I went and checked on him. I pulled up and he was STANDING on the top of a 12 foot ladder painting the railing and deck roof, with a paint sprayer.  Not only had he drug out his ginormous air compressor, figured out the tubing, located his spray gun, but he had taken it upon himself to complete in 1 day, what would have taken my sister and I another full weekend.  He was so proud of himself that he had gotten it all accomplished. I was so angry at him for doing it. Not that I didn’t appreciate that I wasn’t going to have to, but because he could have easily hurt himself, falling as he could not feel the right side of his body at all still and he was standing on the top of a tall ladder.  I messaged my sister immediately and said, ‘Well, deck railing and roof metal are painted, and Dave isn’t dead – so good news, all in all!’ We laugh about it now, but I still remember clearly the panic I felt when I pulled into our driveway and there perched my husband, 12 feet in the air, painting away.

 

The Day the Seizures Started

Almost 3 weeks from the day of Dave’s initial bleed, while at Occupational Therapy, Dave had his first seizure.  It was terrifying, to say the least.  Another ambulance ride, another CT scan, so many medications.  The trauma to his brain, the ongoing injury was just to much for him and his brain was done.  The start of the seizures was actually harder for us both than the initial bleed.  Managing them, listening to his body, keeping him calm, trying to keep him from overdoing it.  That was the hardest part because he had a goal to finish our home and in his word’s, “I don’t have time to die or seize out.  I have a home to build.”

God was and to this day continues to watch over and protect Dave.  While his self regulation for dangerous situations has tapered off in the years since his bleed, it is still something that I have to regularly remind him to be watchful of.  He is a much better sport about it now, where as before it would make him so angry that I was ‘bossing’ him around. He now knows that I am not and was not trying to boss him around, I was just trying to keep him alive.  He depends on me now, more than ever, to gently remind him to be safe, because sometimes, he just forgets.

I am so thankful that my boy lived, that we were able to continue on with our dream of building our home and most importantly, that we get to live every single day so intentionally.  Not everyone does that, but really, it is the only way to live!

Still adventuring…

Jaimie & Dave