Living in a Zoo

The zoo is a place that I love to take our children.  To the Como Zoo or the Wapheton Zoo we usually go.  The boys love to look at the animals and learn about what they eat and how they live.  A new kind of zoo that I am learning about is the zoo that our lives have become.  My in-laws home has become a zoo, it's not as bad as it sounds. 

There are constantly people coming over to see Aaron and our family.  On average we have 12-19 people for supper every night.  It is quite the change from our small, quiet home (well quiet compared to now.)  My mother-in-law and father-in-law love it though!  They love visiting with people and getting a never ending parade of company.  Lucky for us, we have received enough food where we have barely had to cook.  I can concentrate on my husband's health and my boys well-being. 

Tator-tot hot dish is a staple here in the Midwest.  I never realized that there are so many different varieties.  But we love every kind.  Buckets of stew, several different kind of hotdishes, chicken pot pies, baked potato casseroles, egg bake, lasagnas, bread, bread, and more bread grace our refrigerators and freezers.  They are all delicious and will really help us out in the long run.  I know that the parade will come to a stop soon and I will have to start cooking again, which will be fine too.  We are very thankful for everyone's kindness and delicious foods and gifts.

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On a side note, I have to share a catheter mishap.  My poor husband has had a lot of personal mishaps aired on this blog...so here comes another one (that is totally not his fault.)  I keep Aaron's catheter supplies in the bathroom that is off of our bedroom at Aaron's parents house.  His catheter tubes are usually hanging in the shower drying or soaking in a vinegar solution to help to disinfect them. 

We are fortunate enough to have a large family and two of our boys' cousins are Seth (age 4) and Eli (age 2) who love to come over and play.  All of the boys love to play with Kinex, which is also something that I love too. 



This is little Eli, helping himself to some yogurt at his house.

Seth eyeing cookies that inadvertently ended up looking like boobs. 


So, a couple of days ago I noticed that the house contained many extra kids but was exceptionally quiet.  Hmmm.... what does a house full of little boys plus quietness equal?  It equals trouble. 

I started hunting for the boys.  They were not playing in their usual domain, the basement.  Hmmm... they did not sneak outside.  My search took me to the bathroom, yes the same bathroom that contains Aaron's catheters.  There they were, playing quietly on the floor with their Kinex space ship and flying car creations, fueling up their ships with Aaron's catheters (they were clean.)  And Seth was weaving one catheter in and out and through his flying car.  I can't really blame them, they had absolutely no idea what those particular small, clear tubes were for.

Laughter bubbled out of me and the only thought entering my mind was "is it inappropriate to take a picture of this and blog about it?"  Well, I decided that since I have aired all of Aaron's personal problems, including bodily functions that I would forego this particular one.  But, I will still blog about it.

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It has been almost three weeks since Aaron's accident.  He has been doing surprisingly well.  We went for his second car ride today (including his car ride home,) out in the cold and wind.  He tolerated it very well.  We have been very fortunate that he has healed so well.  He still needs lots of help but is learning to do things on his own.  His walker is blessing, he walked a half of a mile today...just around the house but that is HUGE!  And the boys love to see their dad up and around.  I think that his progress has come through all of the prayers people have been sending his way.  It is the only explanation. Thank you to everyone who has prayed for him!  Our new kind of normal is still difficult but we are getting used to it.

The Adventurer

Our boys are very adventurous.  Constantly trying new things and getting into everything, virtually fearless.  Well, I can see where they get it from...their father.

Today, while I was in the bathroom, Aaron was up walking around with his walker.  He has become pretty steady on his feet so I usually try to give him space.  He gets very upset with me when I hover.  When I emerged from the bathroom door, I saw him being very naughty.  He was walking down the stairs...by himself.  Yes, that's right, walking down the stairs...by himself.  I felt my heart pounding in my head and tears overflowed my eyes. 

"No!" I yelled and ran to him.  I do not know exactly why I was so upset about this.  The vision of him falling down the steps and re-breaking his back flashed through my head.  He could have undone the weeks of progress that we made. 

"I like an adventure," he said with a smile.  I know he was just trying to push himself, just trying to see if he could do it on his own, without me holding him up.  He used to be my rock and now I am his. 

He promised that he would never take on an adventure like that again.

Aaron walking around his mom's house.  It is Christmas all year around:)

The days have become very hit and miss.  One morning he will be up walking around, laughing and talking.  By the afternoon, he will be overcome with muscle cramps and pain.  Then, it takes a day to recover from the pain and he starts to fall behind.  Frustration and depression show their ugly faces.  But, he has been working hard, pushing himself (which is sometimes not the wisest thing.)  Aaron is an amazing person.

Our boys have been great.  Honestly and truly...they have been handling everything with ease.  Kids are so versatile.  Noah has really stepped up to the big brother plate, keeping vigilance over his little brother.  Abram has been very helpful, without complaining.  We are very fortunate. 

I am also very thankful that Aaron has such a large supportive family.  They have all been very good to us.  His work family and my work family have also been very supportive.  There has been a never ending parade of people coming to Aaron's parents house.  Everyone helping in every way possible (their cooking beats the hospital food!)  It is amazing how everyone, especially in a small community, come together in a time of need.  Again, we thank the Lord for all of the love and support from everyone.

A New Kind of Normal

A couple of days ago we took another large leap on the path to recovery.  We ventured home...well not to our home but to my in-laws (temporarily---I hope.)  We left the hospital with my brother-in-law and father-in-law and took our dreaded van ride back to our home town.  I had envisioned stopping every 10 minutes, throwing out puke bags, and my husband sitting in the front seat...writhing in pain.  But, much to our surprise, it went just fine.  No excessive pain, no nausea, just friendly chit chat and joking around.  It was so nice to be outside of the hospital walls, words cannot describe. 

Then, a new kind of normal began for us.  I was not sure what to expect...living with my in laws...with no extra nursing care.  It was up to me to maintain our daily lives including cooking, cleaning, and laundry on top of all of my children's and husband's needs.  But, a routine was quickly established and hopefully I am meeting everyone's needs to the best of my ability. 

The biggest difference between the hospital and home is the night routine.  Ugh, I am someone who needs sleep.  At the hospital, the nurses religiously turned and repositioned Aaron.  They provided him with all of the meds that he needed.  And the orderlies cathed him.  All of these activities, with very little disturbance to me while I was some what asleep on the sleeper sofa.  Now, amidst our new kind of normal, all of these tasks are on my shoulders.  Reality slapped me in the face.  For a short amount of time, I will have to give up sleeping more than an hour or two at a time.  It is difficult for me, I will have to admit, because sleep is a valuable thing.  But it is worth the sacrifice to have my husband and I back at home (our house is literally right down the road) and our family back together again.

I used to tease Aaron about going to the bathroom every five minutes...now I am praying that he will be able to go on his own with me having to cath him.  His bowels used to be like clock work and now we have a bowel prep program that we have to do every morning to get him to go.  Sometimes, it is hard for him to feel if he has gas, has to pee, or if he has to poop.  Then bodily functions turn into a guessing game.  Is it a poop...is it a fart...  "I don't know how to help you," I find myself saying over and over.   So, the little things that I used to take for granted, like clock work pooping or peeing every five minutes, now takes twenty minutes or longer to complete. 
We used to cuddle a lot at night.  I would often times wake up snuggled in his arms.  But we cannot snuggle anymore.  Hopefully, there will be a time when we can again.  I really miss his arms around me. But, we are relearning how to cuddle together.  Usually, I am so afraid to move because I might inflict pain on him.

So, our new kind of normal has begun.  And really it is going better than I had expected.  Through all of the love and kindness of friends and family, we have learned how to cope.  We are very thankful for that.

Passed

Physical therapy and occupational therapy are complete!  Aaron passed with flying colors.

It is amazing how weak a person gets after laying in bed for a week.  The therapists say that after three days of laying in bed, people start to lose muscle tone.  Aaron was on bed rest for almost a week and he had muscle problems to begin with, so you can imagine how weak he was to start with.  But personal determination and gentle nudges from caring family members helped Aaron on his road to recovery.  He has had a few hiccups on his road, but he has worked very hard. 

Aaron working with one of the therapists.

The day after Aaron had his surgery, a 15 year old girl had a very similar surgery (but not as invasive.)  She currently continues to be on the neuro floor with chest tubes and drains---the whole nine yards.  We do not know her whole story, but we are thankful that Aaron made such a speedy recovery.  The doctors are very impressed with the progress that he has made.  It helped that a few select friends and family members had the whole midwest praying for him.  I lost track of how many prayer chains he is on.  Through the power of prayer and the grace of God, Aaron is alive, well, and can walk.  His bowel and bladder issues are just a few bumps in his road.  Hopefully, with in the next few weeks he will regain more control over that. 

Our 2011 year has started off a little bumpy.  It could have been much worse, he has the scars to prove it.

A couple of Aaron's scars.  He is talking about getting a tattoo on his back...but we will see.

The highlight of my day was to have a student nurse take care of Aaron.  It brought back lots of memories from years ago when I was a nursing student.  I love to watch them fumble with cords and alcohol swabs like it is the end of the world.  OMG...how funny (I know that it sounds mean, but it was hilarious.)

Tomorrow we are homeward bound.  I cannot wait to see our children.  We have Skyped with them several times but it is just not the same.  To feel them in our arms and curl up with them to read and listen to piano, I can hardly contain myself.

Bumpy Roads

The road to recovery has bumps...

Straining to poop seems like not a big deal...maybe.  But, when you have just had part of your spine replaced and are in a back brace, straining to poop can be a very big deal.  Especially when you stimulate your vagus nerve and black out on the toilet.  Then, your wife had to man handle you back to bed (after putting the bathroom call light on---the nurses would not get speeding tickets, I am sure of that.)  So, this morning there were a few bumps on our road to recovery.  But after some rest and relaxation, Aaron felt better and was able to continue with his inpatient therapy program.

It was just a little bump in the road but it was enough to set Aaron back an entire morning.  Later in the afternoon, we received good news.  We get to go home on Friday.  Yes!  We get to see our children again, after almost two very long weeks.  I cannot wait to hold them in my arms, clean up their messes, and break up their fights.

Homesick is a feeling that I cannot get rid of.  Aaron and I were fortunate enough to have his brother, Ryan, stay with us for several days.  Ryan made the hospital feel a little less sterile and more like home.  He really eased a lot of our pain, calmed our nerves, and was an extra set of hands to take care of Aaron.  And even though his wife may not admit that she missed him (even though she must have---how can you not miss Ryan?) I will say that I miss him now that he is gone.  So, Aaron's care is left up to me and some absentee nurses.  Again, I am thankful for the care that our nurses give our patients in our little, hometown hospital.



Aaron's brother Ryan took this photo of himself with my phone, it will haunt him for the rest of his life.

 Aaron is finally starting to realize how loved he is.  He has had countless visitors, piles of cards and gifts, and endless thoughts and prayers.  Instead of shedding tears of sorrow and pain, he has started to shed tears of joy, love, and appreciation.  He tells everyone that he loves them, EVERYONE.  If anyone calls him, he says "I love you" before hanging up the phone.  Aaron has always been a loving, giving person but he definitely has a fresh outlook on life.

So, the countdown is on...two more nights sleeping at the hospital, one more day of a grueling rehab schedule, four more hospital meals, and a couple more doctor visits.  Then we are on our way home, returning to our loved ones. 

Today Is a New Day

A new day started with a new hospital room.  Another move, another bed, another sleeper sofa, hospital room #5.  It makes me appreciate our little hospital and the continuity of care that we give our patients. 

But today was a good day on the road to recovery.  There are bumps in the road, muscles cramps, nausea, vomiting, hard work, sweat, and tears.  But we are on it.

Aaron's upright, working hard with therapy.

I think of my children back at home.  I miss them so much...I can not find the words to describe the ache in my heart.  Thank God for grandmothers and friends that will look after them while we are on our road.  My poor little Abram has the stomach flu and my poor mother has to clean up after him----and I feel so much guilt.  And I...we...are stuck in a hospital room waiting for strength and mobility.

The highlight of my day:  When Aaron went to surgery I held on to his wedding ring...it was like I had his life in my hands.  I placed it on my necklace and kept it close to my heart (I know it sounds cliche but it is the truth.)  Today, he was able to put it back on his finger and we both wept.

We can still see the light at the end of the tunnel.  And it is getting brighter.  We were told at the end of this week we will probably be able to go home. So family members are busy working trying to prepare our home (actually we will be living with Aaron's mom) for his arrival.

This is Aaron's mom.  I know it is an old photo but I do not have my camera or any of my other photos at the hospital.  This is the best I could come up with.

Our previous experiences with surgery and in ICU are a faint blur in my memory and a slight ache in my heart.  Now, we have no where to look but to the path ahead of us.

The Road to Recovery

It has been a long week. One week ago today, Sunday, we had our life changing moment.  And needless to say, we are still hunkered down in the hospital.  I know that we will be here for a while.

Yesterday, Aaron walked.  I cannot express the joy and tears that I felt in that moment.  I did not know if that day would ever come.  Even though it happened when his neurosurgeon pulled him out of bed, literally, with a back brace, walker, diaper, catheter, and "poop running down his legs"---Aaron's words---- and nothing else on and man handled him into the hallway.  And three of us held him up and trucked down the hallway.  Aaron was pale faced, blood pressure in the gutter, and very sore, but he walked. He walked. 

It made me think back to the day that Abram walked.  We never thought that day would come.  But, one day he took steps in our dining room, with his back brace, walker, and diaper on.  Aaron and I were both lucky enough to witness it.  And we shed tears of joy. 

Yesterday, I had the same indescribable feeling.  Aaron walked.  There is a light at the end of the tunnel.  I can see it.

The road to recovery is going to be a long bumpy road.  He is going to have more pain than I could ever imagine.  Aaron might not be able to control his bowels or bladder, he maybe never will---although I hope and pray that they will.  But, darn it, he can walk.  He has feeling in his legs and that is a miracle.

So, today through the pain, nausea, enemas, commode mishaps, vomiting, and bad tempers, Aaron walked.

We are so fortunate.  Thank you Lord!

The Night from Hell

"Please Lord give me strength..."

By midnight the day of Aaron's back surgery I felt like a homeless person.  I wondered from waiting room to waiting room living out of my purse and a small grocery bag.  I went wherever the nurses told me to.  I stole 10 minutes of shut eye here and there but never really slept.  I had not really slept since Saturday---during the day.  I just wanted them to let me into ICU to see my husband.  What was taking so long?

Then they came and told me to come in.  When I saw him, tears over flowed from my eyes.  He looked terrible.  He was so swollen, white as the bed sheets, intubated, had drains and chest tubes and an art line and many different kinds of drips going. 

I tried to talk to him through my sobs, telling him over and over that I loved him.  I caressed his hair and prayed.  His blood pressure was low, heart rate were high, and spiked a fever.  I prayed and prayed.

At 0300, Aaron went unresponsive.  His blood pressure (through an art line) was 50/30 and his heart rate was in the 160's.  I thought he was going to die.  I thought I was going to loose him.  I had to step out while the skilled nurses worked on him. 

I went to the waiting room and called my mom.  I felt so alone.  "I am trying to be strong," I sobbed to my mom.  "But I just am falling apart."

"You can't be strong when you have no strength left," she told me.  And I cried.  She managed through some miracle to calm me down.  Then she sent in reinforcements.  My cousin Maria was at the hospital with me with in minutes. 

Fortunately, all of our prayers and hopes were answered.  Aaron pulled through. 

Later on that morning, Aaron was extubated and seemed to have turned the corner.  He had feeling in his legs!  It was a miracle.  He was very nauseated and painful but in good spirits.

That afternoon, most of the drips were off and he received more blood (hgb 6.8.)  His mom and dad and a few family members and friends ventured in to see him. 

Then that night, he was transferred out of ICU and moved to the Progressive Neuro Unit (which is like an ICU with private rooms.)  And we were well on the road to recovery.

The Never Ending Day

On January 10, Aaron's road to recovery started with surgery.  At 0630 I kissed him with tears in both of our eyes and said "See you later."  And he was gone.

The neurosurgeon had explained to us what the surgery was going to entail.  It would be an all day affair, meaning 12 hours.  He would have a general surgeon, Dr. Lundein, make a large smiley face incision on the left side of his abd and move his inner organs out of the way.  Then, Dr. Cherr would remove all bone fragments and put a titanium basket where the vertebrae was.  He would then place the bone fragments into the basket and miraculously they would regenerate a new vertebrae.  A titanium plate would be applied and the general surgeon would close him. 

Then it gets tricky.  They needed to turn Aaron on his abdomen and go in from the back.  He needed to make his spine more stable.  He would apply 2 rods and several screws to make him the bionic man.  My trust was in foreign hands and modern technology that my husband would not only live through this but also walk again.

The day dragged on and on.  I watched crazy people in the waiting room with Aaron's mom and dad.  I texted friends and family on how Aaron was doing.  My cousin Maria had made me a survival kit of sorts with books and candy and word finds, etc.  But my mind was just not working.  And my hands were so shaky.

By the end of the day, the waiting room was dark and empty.  Aaron's mom and dad and I had taken over an entire section.  The OR crew (and frankly everyone else at the hospital...except for a particular security guard) was very kind.  Someone either called me or talked to me at least every couple of hours with updates.  They made a difficult situation much easier.

Then, at 830 at night, he entered recovery.  Dr. Cherr, the trauma neurosurgeon, came out to talk to us and collapsed on the couch.  I really wanted to ask him how he eats and pees when he is in surgery for that long, but I did not think it was appropriate.  He spoke words that I will never forget, "This is a huge deal...he was within one millimeter of loosing all feeling in his legs...I do not know how he still has feeling and electrical impulses to the lower half of his body...it's a miracle..."  He carefully showed us x-rays and patiently answered all of our questions. 

Aaron lost FIVE LITERS of blood.  Five.  That is about how much the human body holds.  But he was stable, alive, and that is all I cared about at the time.

I paced the waiting room, alone, waiting for the phone to ring to tell me when I could see my husband.  His parents were exhausted, it was too much for them.  So, they headed for their hotel room.  At 1130 pm, the phone rang and I was notified that Aaron was not waking up very well and would need to go to ICU.  The worse news is that at one point they were going to try to extubate him and unfortunately he vomited.  So he aspirated some of his stomach contents (which is very bad.)  He ended up having to continue to be intubated and have another orogastric tube placed. 

I waited in the waiting room for them to get him situated in ICU.  I prayed and prayed and prayed, until my knuckles hurt.  I will take him home...I will not lose him...

Life Changing Moment

Our lives are defined by moments.  A series of moments that define who we are and what means the most to us.

A phone call can change our lives in an instant.

Last weekend I worked 12 hr nights and it was busy and stressful.  Like the kind of stress where you literally have someones life in your hands.  So, Sunday morning I finished up work and was exhausted.  I drove my frozen SUV to my moms house (because her house is quiet) and crawled into bed.

I always talk to my husband before I go to sleep.  We chatted on the phone for a while and then off to church for him and the boys and to sleep for me.

Then it happened again...ring...ring...ring...

Who is calling me?  Do people not understand that I need to sleep?

I ignored the first couple of rings.  But this unknown number kept calling.  Then the life changing moment unfolded..."Amanda, Aaron has been in an accident.  You better come to the hospital."

I rolled out of bed, and rushed to the hospital (still in by pajamas.)  My mind and my heart were racing because I have gotten a phone call like this several years before.  "Amanda, your dad was in an accident, you better get to the hospital right away..."  He never came back.

I arrived at the hospital before the ambulance (surprise surprise) and was greeted at the ER doors by my friends, family, and coworkers.  Aaron's aunt and a good friend of mine were his nurses, what a relief to see their faces.  Those of us who work ER live by an unwritten rule, Prepare for the worst and hope for the best.

He was wheeled in and the never ending nightmare began... he burst his L1 vertebrae.  This is very bad.  Completely shattered it.  (The neurosurgeon said it looked like sharp pieces of sand and rock...but I will talk about that later.)  Then, off to a higher level of care via helicopter.

When I arrived at the other hospitals ER, I was already in shock and the little security guard treated me like a felon.  (I have to talk about this because I would like to get him fired but I think I will blog about it instead.)  This little prick literally came up to my  shoulders and I could squish him with my pinky finger.  He asked to see my purse and for me to empty my pockets onto the table.  My hands and my brain were not working.  I handed him my jam packed purse and he said, "Are you kidding me?" and laughed at me.  Then I put the stuff from my pockets onto the table and he said, "Really ma'am.  Put them in the basket.  Come on. You are just making this harder on yourself."  I was in tears.  So, finally, the little jackass let me walk through the metal detector and go to see my husband.

My cousin, my life saver, Maria was already there with him.  He was in so much pain. The trauma neurosurgeon walked in.  Now, we have had to deal with several different neurologists in the past and they all seemed the same.  But, this guy was different.  He had bedside manner.  He talked about Aaron like he was a human and not a science study.  He went over the plan of action, surgery all day tomorrow.

A problem that compounds Aaron's broken back was that he also has Ehlers Donlos Syndrome (like our youngest son.)  So, all of his tendons and ligaments are extra stretchy.  And, in this case, that is very bad.  Dr. Cherr had to formulate a plan on how to deal with this disorder and fix Aaron's back by the morning.

Several hours later we were off, up to his first in a series of rooms.  He had to lay flat and not move his back at all until surgery.  His spine was too unstable.  Then, Aaron spoke the dreaded words, "I think I am going to throw up."  I grabbed an emesis bag and held it while the nurse attempted to tilt his head.  Well, it did not go so well.  Let's just say that I ended up washing my hair in the sink and wearing some hospital scrubs.

During the night, Aaron and I shed tears together, prayed together, grieved together, and hoped for the best together.  We tried to emotionally prepare for the journey ahead, but I do not think that is possible.  Life is hard but we will make this journey together.

Kangaroo

Noah and Abram love to read books.  Well, they like to read anything.  Magazines, signs, you name it.

Abram has more of a passion for reading than Noah because Noah has some difficulty reading.  He does not see sounds in letters as other people do.  For example:  -th...well we know what that sounds like.  But Noah sees it as thh...haaa instead of "th" (if that makes sense.)  So, the point is that Noah likes to be read to, but because he has a hard time reading, he does not necessarily like reading on his own.  Noah is more of an artist, constantly sketching and doodling.  I foresee a future Monet or Leonardo.

I love Noah's tummy in this photo!

I can watch him sketch for hours.  It is interesting to see on paper what is inside of his head.

So, this Sunday church was cancelled and we hunkered down in our home to stay warm.  Except for Aaron---he decided to go snowmobiling all afternoon and into the evening (work hard play hard, I guess.)

Ok----the point of this story-----

Abram read a book with a kangaroo in it.  That was it.  He wanted a kangaroo.  Not a toy kangaroo...but a real one.  "A real one mama,"  he kept repeating over and over and over again. 

"What is a real one, honey?"  I asked him.

He replied, "One that poops and pees."  It was obvious that he started to form a plan in his head on how to take care of his new found love.

"We will need to build a tent,"  He says.  "He can sleep outside."

"Kangaroos  do not like the cold.  They like to be warm.  Kangaroos would not like our winters,"  I say convincingly.

"Dad can put a geothermal in the tent," He stutters through.  Abram had an answer for everything.  Any obstacle I came up with, he had an answer for.  He figured out a bed for this kangaroo, food for him, and a potty.

Then, he walked over to our phone and brought it to me.  "Call God and tell him I need a kangaroo," he said confidently.

Trying so hard not to laugh, I said, "We pray to God, we do not call Him." 

"Well, lets go to church then,"  He says pulling on my hand.  "You need to tell Him that I need a kangaroo!"

This has gone on for days.  Kangaroo this, kangaroo that.  He meanders around our house with his book (that houses a pic of the kangaroo) slung under his arm.  Everyone who enters our home sees the picture of the kangaroo and is notified that Abram needs a kangaroo.

Hopefully he becomes obsessive about a different book soon with something more feasible in it to have instead of a kangaroo.  Children's imaginations hold no boundaries.  I love that about them!

"The Polar Express is about faith and the power of imagination...  It is also about a desire to reside in a world where magic can happen, the kind of a world we believe in as children, but one that disappears as we grow older."-- Chris Van Allsburg