Deeper Waters

We have entered a whole strange new dimension of confusion, difficulty, frustration and pain.  

On the one hand David’s improvements continue to astonish me.  He walks without his walker (though I still make him use it for fear of repeat injury from falling), he uses the bathroom consistently unless he is in a very deep sleep, his speech has improved to the point that he can hold conversations, he has successfully navigated a short flight of stairs up and down unaided, he remembers and shows concern for the well-being of our kids, he has a sense of humor and shows a full range of other emotions.  I think back to last week and feel like he has made leaps and bounds of progress.

On the other hand he does not always know who I am.  I asked him today if he knew my name, he did.  I asked him if he knew who I was and he said “Some girl.”  I told him I was his wife and we had been married for 8 years.  He laughed and told me that wasn’t possible.  I showed him our wedding picture and he just smiled and said “Whatever.”  Funny. . . sort of.  He does not know why he is in the hospital, which is understandable, but it causes him to be confused and frustrated and angry when he is told he cannot leave.  He can be reminded of why he is there and be reasoned with to a certain point, but quickly becomes confused and agitated about it again and again.  His responses to questions or conversations are sometimes appropriate, and sometimes very childish and nonsensical.  It’s like he is some strange version of David who looks and moves and acts like David, but is not really him.  It makes my own brain feel like it’s second-guessing all the time, and I have to keep reminding myself this is a normal stage to go through.

David had been asking me all day long today when the kids were coming.  I kept telling him around 3:00 but his sense of time is still nonexistent.  When they did finally come he lit up and wanted to hold them and hug them and play with them.  They are both still somewhat afraid of him and confused at how different he seems.  It’s so hard because it’s important for David to feel loved and accepted by our kids, but at the same time would be so damaging to force them to show affection that they don’t necessarily feel towards him as he is now.  I brought a ball and had them break the ice a bit by throwing it back and forth to each other.  Play is probably the best way forward here and I’ll have to think of more things they can do to interact without causing strained feelings either way.

When it came time for me and the kids to leave (we had to go pick up my sister at the airport, hallelujah) things got bad pretty fast.  In addition to asking about the kids, the other thing David continuously asks about is going home.  When we were leaving and I was trying to explain to him for the millionth time why he had to stay. . . . he started crying.  He said he didn’t know why he couldn’t leave and that he hated it there.  He just wanted to come home with us.  And I couldn’t hold it back and just started crying with him.  If he only knew how much I just want him to come home, how much I just want for this to be over and for us to be a family again, how much I need him and miss him and feel so lost and weak and depressed without him.  But he can’t understand right now.  And it tears me apart to think of how confused and distressed and trapped he must feel.

And so, while I am elated with the great strides of progress being made, I also feel in some ways that we are entering deeper and more troubled waters.  David continues to increase in consciousness and awareness, and yet is still so incapable of remembering and comprehending so many things.  Seeing him suffering like this and having no real solutions for him has the potential to break me in new and terrible ways.  I am clinging to the feelings of peace and assurance that I have had that this will turn out ok, but it is going to be one wild ride and I have this feeling that things may get worse, maybe a lot worse, before they really get better.

Loves from Z

Loves from J

Roaming the halls (PC Heidi Scott)

More Miracles

David had his facial reconstruction surgery two days ago.  I brought the kids with me to the hospital that morning to make sure they saw him one last time looking somewhat normal and recognizable before the surgery.  David was tired from a restless night and wasn’t very responsive to them.  He did pat J on the back and head when he climbed onto the bed with him.

David was in surgery for about 5 hours.  The surgeon put nine metal plates in different areas of his face to stabilize all the fractures.  He checked David’s eye sockets but decided not to do anything to them.  They are pretty shattered but the bones were not displaced enough to warrant intervention.  

We were moved from the “neuro” floor to a different tower where Dr. Nip likes to have his patients recover from surgery.  He is very particular about. . . lots of things. . . but he apparently hand-picks what nurses he wants on his special floor to take care of his special patients.  In my opinion, the more particular the better when it comes to scalpels and titanium plates.  And his new room has a great view of the high rises and the ocean beyond.

David’s uncle came that afternoon and helped us move to our new room, and sat with me and David while he was coming out of his anesthesia.  I wanted to stay the night with David that first night after surgery just in case, so David’s uncle got a hotel for the night.  As the anesthesia continued to wear off David became progressively more restless and anxious and uncomfortable.  His pain meds had been switched during the surgery and I think that was a big part of his agitation.

At some point in the wee hours of the morning I nodded off and woke to the sound of ripping tape. . . David had gotten ahold of his PICC line and pulled the whole thing right out.  He had also managed to rip out his NG feeding tube and he made a valiant effort to free himself from his Foley catheter.  A peripheral IV was placed to keep him hydrated, but it wasn’t long before he pulled that out, too.

Well, David needed at least one functional line in him to keep him hydrated and so the doctor in charge for the night wanted to put him on some anti-psychotics to calm him down.  I told her absolutely not and so they put his wrists in restraints instead.  As soon as they all left the room David started struggling and fighting against the restraints.  He looked at me from his swollen face with panic in his one open eye and said very clearly “Please, please help me!”  Well, I couldn’t possibly leave him in the restraints after that so I freed him and somehow managed to stay awake the rest of the night to stop him every time he went for his IV, which was often.

The next morning he was worn out and so was I.  Dr Nip came in and managed to replace David’s feeding tube, then sutured it into place in his nose (ouch!).  When the trauma doctor came in we agreed to put David back on his pre-surgery pain meds.  The occupational therapist came in while I was talking with the Rehab Hospital representative and started working with David.  She sat him up, had him wash his face with a wash cloth and go through some range of motion exercises.

I explained a few things to David’s uncle and left to spend the rest of the day at home.  I asked him to keep me updated with texts about the goings on of the day.  I really didn’t expect anything too exciting, so I was astonished when I had barely gotten home and he texted me that David stood up and peed in his plastic urinal thing and reattached his own diaper!  The next text came less than an hour later.  David was trying to get out of bed and the nurses were trying to figure out why.  He used a pen to write “just for the view” on a blank piece of paper!!  I could hardly believe it so I asked him to send me a picture of what he wrote. . . . sure enough that’s what it looked like.  So they helped him stand by the window and sent me a picture of him gazing out.  I was overjoyed. . . . and really miffed that I was missing it!

The texts and pictures kept coming over the rest of the day. . . David up walking around with a walker, signing his name, taking a trip outside in the wheelchair, going to the bathroom on the toilet (no pictures of that one though), no more diapers, hanging out on the couch down in the lobby.  I just couldn’t believe it.  

The kids and I went to our church Christmas party and we had a great time.  I was a little bit nervous to be out at a social function. . . and it was especially hard to be in that familiar setting without David.  But I had a good time, especially with all the good news being texted to my phone at intervals.

When I arrived at the hospital this morning I came up the elevator to see David and his uncle hanging out in the little waiting area outside.  Apparently David had already been out cruising around in his walker/wheelchair for an hour and a half prior to my arrival.  David’s uncle wheeled him back into his room and David stood up with his walker, walked himself into the bathroom, undid his shorts and sat down on the toilet.  When he was done, he stood back up and tied the drawstring on his shorts, walked over to the sink and washed his hands.  To say I was stunned doesn’t even begin to cover it.  His breakthrough in the past 24 hours has been astonishing, unbelievable, miraculous.

The speech therapist came by today to assess his ability to swallow.  His face is still too swollen and sore to get a good read on that.  But she did also ask him a series of yes or no questions, random things like “Does a cork float on water?” or “Is a hammer the right tool to use to cut wood?”  The answers came slowly but he was able to answer them all correctly except one.  Then he fell asleep. 

He has since gotten up a couple of times to use the bathroom, and has taken a walk with the Physical Therapist around the halls in his walker.  The social worker came in to warn me that if he improves too much too fast he may not be accepted into the inpatient rehab hospital that we had planned on him going to after he is discharged from here.  Planning for discharge is a story for another day.  It has been very difficult trying to navigate that maze, especially not knowing beforehand what David’s condition will be when he is at that point.

Between this and that, visits from therapists and his mom/sister and our kids and taking a walk in the sunshine outside the day has gone by really quickly and happily.

I think back to almost 3 weeks ago.  It feels like a lifetime ago, and only yesterday that he was totally incapacitated, being kept alive by machines and chemicals.  There is still a lot left for him to accomplish but right now his progress make it all seem so very possible.

David checking out the view with his uncle

Cruising to the bathroom in his walker

Hanging out in the lobby

Demonstrating how to use a hair brush

Progress

(David practices sitting and standing for PT)

Sunday was a good day, as Sundays often are.  David had longer periods of wakefulness and seemed to be observing and absorbing everything around him.  I spent some time snuggling with him in his bed which he seemed to enjoy.  He even brought his hand up and gave my head a little scratch once. He was still fairly inconsistent with nodding yes or no to questions, still not really responding to verbal commands, but he seemed closer.  The big surprise of the day came when the nurses turned him onto his sore side to change his sheets.  He tried to speak!  It was not a moan or an involuntary noise, he was using his voice and moving his lips to try to say something.  I have no idea what it was he was trying to say, but it was the first time I had seen him come so close to speaking.  I left the hospital feeling buoyed up and hopeful.

Yesterday (Monday) was pure torture.  David was so sleepy and un-interactive all day long.  When his eye was open his stare was more vacant, less alert.  He didn’t react when I snuggled with him again.  The day wore on slowly, slowly as my optimism dwindled, leaving me feeling empty and sad.  

Two of his coworkers and good buddies came to visit towards the evening.  I told them not to expect much, that he’d been very sleepy all day.  But when they came in the room, he woke up, looked at them from his one eye and smiled. . . a HUGE smile, teeth and everything.  He seemed to be really happy they were there visiting.  I had to step out of the room for a minute to talk with Dr. Nip, the plastic surgeon (a whole other story) and when I came back in, the guys said David had been trying to talk to them.  One of them is getting married in a couple of weeks and had given David the invitation to look at.  And he was holding it, and turning it over and over in his hand, trying to say something about it!  After the whole day of. . . . nothing. . . . . it was like being in some kind of weird dream to see him so animated.  It was the first time I’d seen him hold something in his hand in such a normal, natural way.  And he was moving his lips and vocalizing very quietly, nothing we could make out, but he was doing it a LOT.

A few minutes later I stepped out again to talk with Brandon, the music/art/counseling therapist and David’s buddies left.  Brandon and I went back into the room intending to see how David’s responses were and make a plan for what kinds of therapies would benefit him.  Brandon took David’s hand in his and told him to squeeze. . . and he did.  And he repeated it with the other hand.  Brandon told him, without pointing or gesturing, to wiggle his toes. . . . and he did!  Brandon asked David if he was in pain and David shook his head no.  I was just stunned.  I asked David to touch his nose, his knee, his ear.  Verbal commands only, no leading or pointing.  And he did!!!  

And then Brandon asked David if he knew me.  And he looked at me for a minute.  And shook his head no.  There was a sick little lurch in my stomach but I pushed it aside.  David’s mom came in to take the night watch.  He shook his head no when I asked if he knew her.

The ride home I felt on the verge of a serious mental breakdown.  Like I was teetering on the edge of some deep dark place where all my worst fears live.  All my what-ifs.  I managed to hold it together long enough to pick up my kids, who were passed out on a good friend’s couch.  I tucked them both into my bed without changing them or brushing their teeth, stumbled out onto our deck and lost it.  All the pain, all the grief, the longing, the doubt, the anger, the guilt, the unknowing, the anguish, the fear, the FEAR.  It all came out of me in sobbing and retching and sounds I didn’t recognize.

And I knelt and I begged God to comfort me.  To send help.  And He did.

I was still kneeling there when I heard someone knock on our door.  I stood and walked around the corner to see whom God had chosen to come find me in such a state.  It was our bishop, with a bag of cookies to share with the nurses and staff at the hospital.  I cried on him and then we sat and talked.  I mostly listened, words were hard to get out, not unusual for me.  And then he laid his hands on my head and gave me a blessing full of comfort and specific promises that calmed my soul and created a barrier between me and the darkness.  Returned me to center.

Today I cannot help but be full of faith, having gone through the experiences of last night.  Today I am calm and settled and looking forward to the fulfillment of what I have been promised.  

David’s night was a bit restless and so he has been sleeping this morning.  But when he does wake up he continues to respond to verbal commands, continues to try to speak.  He distinctly said “Ow! Ow!” when the nurses turned him on his sore side.  He got his face shaved this morning.  I gave him a kiss and waited to see his reaction.  He pointed to his lips.  Maybe I was misinterpreting but I was happy to lay a few more on him.  Miraculous.

(Sitting in a real chair)

(Post-shave)

(Getting the royal treatment)

Holding Steady

(David's last day in the ICU)

David “graduated” from the ICU yesterday.  His new room on the regular hospital floor is very comfortable, but it has been a hard adjustment for me to have him in there with less intensive care than he has received up to this point.  There is no longer even a single screen in the room monitoring any of his numbers.  He is down to just his feeding tube and his PICC line (a fancy IV line).  He has scheduled visits from the nursing staff every 4 hours to check his vitals, and they come in between checks when they are called or if there is medication to give.  But nobody is watching him as closely as in the ICU.

I am glad the doctors think he is stable enough to move on, but it’s a little uncomfortable for me to not be able to see everything going on with his body in colorful waveforms and end-tail numbers on an LCD screen.  He also has not made any major advances neurologically and sleeps most of the time, even though he is down to just one kind of painkiller and some antibiotics.  When he is awake, he still does not speak or follow verbal commands.  He does indicate when he needs to go to the bathroom, and he did give me a high-five last night after I successfully read his cues and helped him pee in the little hand-held urinal.  And he has been more liberal with his smiles.  Agonizingly slow progress, but progress nonetheless.

After we were married David and I went on an extended honeymoon trip to Zimbabwe, a place that continues to call to me, to us, all the time.  While we were there we traveled to the mighty Zambezi River and went on a wild whitewater rafting tour.  I have the details of the trip written down elsewhere, but something that has come back to my mind during this week is the feeling of that moment we first pushed off into the current.

It was deliciously frightening and exhilarating and disconcerting all at once.  A feeling of complete surrender to the pull of the current.  A knowledge that there were no brakes on that raft, no stopping, no going back.  Only forward.  Forward into the rush and the rage of the whitewater, the surge and power of the magnificent, cold river.  A feeling of complete powerlessness, of smallness and weakness and lack of control.  True surrender.

On the river, it thrilled me to my core.  But the magnitude of the current I am now being swept into dwarfs the Zambezi into shame.  Part of me continues to try to cling, to claw my way back to where we started.  But my hands rake through the water and find no purchase.  There is no stopping, no way back.  I am carried inexorably forward, clinging to the unstable little raft of my faith, my hope and trying desperately to guide my little family into and through the huge gaping maw of this rapid we are entering.  To say I am terrified doesn’t even begin to describe what I feel.  

I am doing my best to face forward.  To trust in the things I have been promised in blessings, and in the knowledge of the great, over-arching plan of our Creator.  But it is the struggle of my lifetime to surrender to this, to navigate it and to hold steady to the course, believing that He knows the end from the beginning, when I certainly do not.

Thanksgiving

David’s progress has been too slow for me, but faster than some of the doctors expected.  But really, as they keep telling me, with brain injuries there really are no rules or set timelines.  Anything can happen.  He still sleeps a lot.  Sleep has always been his default setting when he is sick or in pain (or in church) and he is just exhausted all the time from his body regenerating and healing.  When he is awake he is very alert.  He follows voices, he looks at me with meaning and feeling, although I can’t always tell what it is he’s trying to say to me.  He still has not spoken.  The lower part of his face stays fairly immobile.  His left eye, both eyebrows and forehead are where all his expression comes from, and really he has always been that way.  His right eye does not open, the current neurointensivist thinks it’s a damaged 3rd cranial nerve, which controls eye and eyelid muscles.  He was officially discharged from the ICU today, and will be moved to the regular hospital floor when there is a bed for him there.  He was able to sit up on his own for a few minutes today, and he looked like he was ready to make a run for the door!

Thanksgiving has been. . . excruciating.  So hard to see all the families we know, intact and smiling and spending time together making memories.  It’s hard not to feel jipped, and a little angry, that our family is missing a critical piece at such a special time of year.  And it’s really painful to me that the memories the kids and I make this year will not all be shared with their Daddy.

But, this being a day of thanks, the following are some things (far from an exhaustive list) I am eternally grateful for:

• David is alive and recovering, and hope still remains for his return to full function as head of our family, Daddy to our babies, and eternal companion of my soul
• Our children.  Their wide, innocent, inquisitive, mischievous blue eyes.  Their strong, active little bodies.  Their vibrant personalities.  They are my heart.
• My own health, and the ability of my body to carry and bring another beautiful little life into the world.
• The beauty of this island, this world.  The safe haven of the home that I currently enjoy.
• The unimaginable love, prayer and support I have received from all sides.  I have been so touched and so humbled at the sheer volume and scope of what has been done, and continues to be done, for us.  Who are we to merit such great love?
• My mom, who has been my savior this past 10 days.  To be completely confident that my kids are well taken care of has made this time bearable.  I’m sure I would have broken down completely if it hadn’t been for her coming to my rescue.
• The gospel of Jesus Christ.  The knowledge of our Father’s plan for us.  The testimony I have of many parts of His gospel.  Faith in things that are not seen but that are true, that are real.  I don’t have a knowledge or testimony of all things, but I am a work in progress.  And I am grateful for the time in this life I have to continue to make that progress, to learn more, to know more.

I spent some time with David today going through pictures on the computer, and realized something else I can be grateful for is that we really have made the most we could out of every moment to this point.  I do not feel the guilt or regret that some people talk about when their loved ones are lost or changed.  We have spent our days together having grand adventures, loving deeply, being silly and crazy with our kids, working hard, feeling happiness and peace.  We have grown together through shared experience, becoming connected and intertwined in a way that was incomprehensible for us when our relationship was younger, fresher.  It feels absurd to me that we would not continue to go on merging and binding and bonding together.  And so, while I grieve for the memories we may not share this holiday season, I feel confident that we are not yet finished, that there is more to come.

So Many Things

David continues to improve little by slowly.  Yesterday they moved his feeding tube from his mouth to his nose, so his mouth is now completely unencumbered by wires and tubes.  They also removed his neck collar and his lung drainage tube.  Piece by piece his body is regaining and regulating its own functions.  The physical therapist came and was very optimistic about his potential to return to full functionality.  There is talk of moving him out of the ICU in the near future.

I visited with my midwife today, the same one that attended the home births of our two babies.  The plan for baby #3 to be born at home is very much in question now.  During the labors and births of the first two David was my rock and my confidence.  He was the reason I was able to fully trust in and surrender to the process.  He held that space for me and I knew I could fully enter “labor land" because he was there to watch over me, to be with me.  I feel safe when I’m with him.  And now. . . . what his condition will be when the baby comes is still such an unknown.  And I just don’t know if I can do it without him there.  I will probably have to plan for several contingencies and decide what to do when the time comes.  It’s just so hard not to know.

Yesterday the kids came to visit again, by my daughter’s request.  When David saw her. . . he smiled!!  For the first time!  And I cried, but I tried not to cry too much, because happy tears are hard to explain to a 4-year-old.  When I helped him reach his hand up towards her he tickled her arm with his finger.  The love and longing on his face was really unmistakable.  When he saw J he raised his eyebrows at him and rubbed his little hand with his fingers.

It was nice for us to just hang out in the room with him for a little while and give the kids time to look him over really well and ask some questions about him.  I don’t have the answers to all of their questions.  And I don’t know if/when/how to tell them that there may be some things about their Daddy that will never be the same.  And I worry about them.  I worry that they are having trouble processing what’s been going on, that I am compounding the issue by being absent for such long stretches of time, that their emotional needs are not being filled.

I feel the mantle of responsibility that David and I used to share resting squarely on my shoulders and mine alone.  All the decisions that must be made about all aspects of our family’s life and David’s medical care.  But along with the heaviness of it all I feel reassurance that I can be guided, that my decisions can be wise as I allow myself to be open to and rely on the inspiration that can be available to me if I seek it out.  And I feel very keenly the support and love and willingness to help that have been extended to me by family, friends, strangers, making it all bearable.  This would certainly be beyond me without all of that spiritual and physical assistance.

And, while I rejoice and wonder at the truly miraculous progress David has made, I also have had periods of panic and depression equal to or greater than those I had when he was still comatose.  The elation of seeing him awake, moving, alive gives way sometimes to new depths of fear and worry.  Visions of all the different what-ifs of our future together come pouring in through the cracks and threaten to crush me with their hopelessness.  In these bleak moments (or hours) I find it almost impossible to willfully cast out the fear, to turn away from all the potential negative outcomes and have faith in something good ahead.  And so I cry.  And I pray.  And when it’s over I refocus on all the good that is already here.  All the blessings we have already received and all the promise of what may still lie in store for us.  And I am trying to choose to believe in that, instead of despair.

Miracles Continue

My reservoirs were replenished yesterday by taking the sacrament, and by holding and playing with and loving on my babies.  It’s been really taxing on me to be away from them for so many hours at a time, and I’m sure they feel the stress and drain of it a thousand times more than I do, despite the fact that their Grammi is a professional at making life fun.

We did their bath time routine and snuggled in bed to read stories.  They both went right to sleep and neither of them ended up in my bed until around 5 this morning.  I honestly have to say I was a little disappointed that they slept in their own beds instead of crowding in with me. . . . never would have thought I’d ever say that!

I left the house around 6, eager to get to the hospital to see the miracle man.  The going was slow in the torrential rain from the very rare thunderstorm that had blown in.  It was beautiful and wild and powerful, and made me feel small and humble.  I was almost sad when I reached the end of it, but I was glad to be making faster progress to the hospital.

I arrived just in time for the doctor’s morning visit, and David was already off the sedative and pain meds.  He was opening his eyes and looking around a bit.  The doctor came in and started trying to wake him up, and he started responding to her right away.  He was looking around at everyone and she asked me to come help her see what he could do.  When he recognized me he lifted his right hand and waved to me!  He reached out for me and I held his hand and talked to him.  He wouldn’t really do anything with verbal commands only, but he would respond immediately to being shown visually what we wanted him to do.  He held up two fingers, gave thumbs up and tried to wiggle his toes.  It was really hard not to start jumping around and celebrating.

When the doctors were done testing him I continued to stand by him and talk to him.  He kept reaching his hand out and touching my belly, and grabbing for my purse.  When he finally got ahold of it he used it to pull me down on him and I lay my head on his chest.  He patted my back and my head with his hands.  Unbelievable.  Just unbelievable.

He was really anxious to get the ventilator tube out of his throat so I tried to read to him to distract him but he pulled the book out of my hand and dropped it over the side of the bed.  He kept pointing towards the door.  It was hard to tell but I think he was trying to ask for the doctor to come faster to take the thing out, he was very persistent.  She did finally give the ok and the respiratory therapist came in and removed the thing.  At first his breathing was really ragged and choppy but within an hour or so it was sounding much more normal.  Now he is breathing normally and soundlessly, except for when he yawns or coughs, and he seems much more comfortable.

He has not yet spoken.  And he still does not respond to verbal cues.  But he does try to communicate with hand motions and pointing.  It is frustrating that most of the time I can’t figure out what he is trying to say.  Generally it seems like what he wants most is to pull out all his remaining tubes and lines and I hope he’s not angry with me for not helping him. . .  

I just keep looking at him and thinking how miraculous it all is.  We have a long way to go yet, but for today, this is enough.

Zalea expressed interest in visiting for the first time today.  She was very hesitant and nervous, but we did manage to get her to touch and hold his hand.

Preparing to take the ventilator tube out.

Yay, no more ventilator!!  The pressure monitor in his head (still pictured) was also removed today.