When the world spun out of our control

I woke up on the 20th of February 2017 an imperfectly-perfectly normal 44 year old woman.  I went on a 3 mile hike with my 45 lb ruck sack on the roads in our neighborhood, like I have done countless times before.  I listened to my audio book and was excited to incorporate a new training regime to prepare for the race in March, the Bataan Death March.  I was feeling great.  I ate my two egg burritos while I walked since I have been struggling to eat the eggs with increasing my protein intake lately.  I had even posted a gorgeous sunrise celebrating a wonderful day to Facebook.

I got home and put my lunch together, I had prepacked everything the night before so I just had to put it in the bag.  I had changed my lunch bag to a maroon bag from a race from years past.  I put together the food I was bringing for a co-workers welcome back lunch.  I had prepared berries, bought an angel food cake and had coconut milk ice cream so one of my friends could eat it all.  I put all of that in a black bag.  I was pretty excited to see Ashley and celebrate with everyone.  I made my yogurt smoothie to have on the way to work which I had been doing the week before and seemed to work out well.  I was feeling great, confident in my food set up for the day and just overall felt great.  We had a great weekend coming up with going to Phoenix to watch the Cubs play in Spring Training, it was going to be a fun family weekend.

I went to the back of the house, showered, got dressed and while I was doing my hair I started to feel funny.  Now, the Wednesday prior I had this same type of feeling.  I was on my way to get a patient and I felt like I was going to pass out, my head was killing me and I was incredibly hot.  Being in a medical setting I checked my blood pressure, it was high for me at 139/95.  So I rested for a bit and it passed as quickly as it came.  It happened again on Thursday when I went to get the same patient, ironically.  Again, I rested and it passed by.  So when I felt funny again, several days after that first incident, I sat down and rested a little bit.

It didn't really go away, but I needed to get ready for work.  I would get up and do one part of getting ready and go sit down again.  I would get up and do another part and sit down.  I thought this is getting ridiculous.  Then I puked.  Phew, I think I will be okay.  I felt better.  I looked like crap but, it would do and I headed to the front of the house.  When I walked to the front of the house, it felt strange.  I felt like I was floating. Weird.  But, I didn't rest very long, it was getting so late.  I sent my work a message that I am feeling a little funny, don't think I am getting sick, but I am on my way.

I loaded everything in the car and left to go to work.  I live about a half hour away so I thought, if this is one of those weird spells it would pass on the way to work surely.  I would be sitting down.

As I was driving, it was clear this wasn't passing.  I wanted to at least make it to work where I could be near people if something happened.

I didn't make it.  I thought I was going to pass out and I was profusely sweating so I pulled off on a side street across from some apartments.  I was about a 1/4 mile from work.

I started to violently puke out the side of the car.  I kept my seat belt on because I couldn't hold my body up.  I was able to finally figure out how to call work and tell them I wasn't going to make it, I was on the side of the road sick.  It was rocket science trying to figure out to call Kevin.

I said to Kevin, knowing he was at a noisy school function with the boys, I said, "I need help!  I can't drive, I can't sit up, I can't move, I am scared."  He was trying to get out of me where I was, it took awhile but I told him where I thought I was and I hung up or he hung up, I don't know.

At some point someone blew past me and was honking their horn.  I finally put the car in park and put the flashers on.  Took me forever to figure that out.  I had kept my foot on the brake though just in case.  There was a washcloth in the door that I was wiping my face with.  I used my water bottle to wash the egg burrito off of the door jam before I went to puking more.

I was puking, crying, sure I was dying.  I was hanging onto the door for dear life and puking.  I heard sirens and the sound of a heavy vehicle.  I thought oh no I am too far into the road, they can't get by me.  I should have called 911.  If Kevin can't get me out of the car, we will have to get help or call 911.

Then the voices came to me.  They said, "this must be her, they said it was a woman puking on the side of the road".  They were here for me.  Oh no.  I have to call the insurance to get approved for help.  What am I going to do.

It was out of my hands what to do.  I opened my eyes for a moment and saw Kevin was there too.  Oh no, the trauma this must be for him.  I feel so ashamed and awful.  This is terrible.  What is wrong with me?  I have never been so scared in my life.  I thought that this was it, I was dying.

I could answer the questions they asked me but couldn't keep my eyes open.  If I opened them I was puking.  One of the paramedics that came to the rescue was a friend of the family, Adam who was also at Jack's memorial.  Kevin knows just about everyone in the Northwest Fire Dept from the calls he has gone on and because of his brother Ken who was a Northwest Fireman.  Kevin was able to fill them in on any extra questions they had.

He told them that I had been on a 12 mile ruck hike with Matthew on Sunday and went for a 3 mile today but I had been fine.  They decided to put an IV in me with fluids in case this was dehydration.  They gave me medication to stop the puking too and medicine to stop the spinning.  They had me get out of the car and move over to the gurney to go in the ambulance.  You might as well have asked me to jump from one side of the grand canyon to the other.  It was so hard.  Kevin said it took four of them to get me over there safely. I remember them telling me to not step on my puke.

Kevin said they called for the ambulance that is for patients who are in critical life support condition.  It really scared him, because he didn't know what was happening to me.  They offered to drive my car to the hospital and to put the food from the car in the fridge.  It was so kind.

On the ambulance ride there, which is very close, about a 1/2 -3/4 mile away, they were so reassuring in the ambulance.  They had mentioned vertigo since nothing else made any sense. Because all my other vitals were normal. I continued to try to get sick in the ambulance.  They got me into the ER and gave them the run down.  Someone put something under my nose cuing me to breathe deeply and it would help with the nausea.  It smelled like an alcohol wipe, I have no idea.  I did everything they asked.

They had me change out of my shirt and into a giant hospital gown.  Any movement of my head sent me puking or I flopped over unable to hold myself up.  They said it was Benign Paroxysmal Positional Vertigo. (BPPV).

They had at one point tried to get me to take two pills for dizziness with some water.  I puked them up.  I don't know why they couldn't have given me a shot.

They had someone come in to do xrays of my chest, which was a nightmare, I couldn't sit up.  I couldn't keep my eyes open at all.  I could respond but couldn't keep my eyes open. The tech said, just try sitting still and not puking okay.  Yeah right??  They had at one point told me that I needed to provide a urine sample and made me move over to the bedside commode.  It was awful, I couldn't sit up and was laying on Kevin while he stood there to try to steady me.  I said, I think I have to poop.  But then I didn't, then Kevin smelled a bad smell which was the lunch they were serving and thought maybe I pooped my pants.  It was awful.

At one point, around 3pm, the nurse came in and said, you are going home?????

She took the IV out, gave Kevin discharge paperwork and went over where my medications would be filled.  Kevin and I looked at each other pleading in the same thought of "how am I going to get from the truck inside the house??  I can't even sit up??"  She recommended clear liquids and resting in the bed for the rest of the day.  He had put a jacket on me to get me to the car because my shirt was covered in puke.  She pulled the w/c up to the bed, like I would get up and pop right into the chair.

I sat up, flopped over and puked.

The nurse said, "Nope. You are not going anywhere, you are not ready to go home!"

We read later in the notes from the hospital that I had said I was ready to go home.  I was not well, but, I was coherent and I definitely didn't say I was ready to go home.  We also read that I had to have an abdominal xray because I was constipated?  I was never constipated.

So, they peeled the sweaty coat off of me and put back on the puke gown.  Kevin was so worried about me.  He was there holding my hand and doing everything he could to make me feel better.  Washcloths, puke tube, everything.  The puke tube was this blue plastic thing like a tube that when I held it I squeezed it too tight that I didn't give much room for the puke to go, not that there was anything left at all.

I had a blue headband in my hair when I got ready for work, Kevin was so determined to get it off of me, it became a mission to get it off, it was just one of those things that happens in crisis.

They came in and said they wanted to take me down for an MRI, so I had to take off my necklace, my watch, my ring, my earrings.  Kevin had to help with everything.  He had on both of our wedding bands on together, both of our watches together, he had my wrist bands on his wrist, he put on my necklace; but he put the earrings in his pocket.

I went down to the MRI place and Nancy was the kindest person, she talked me through the whole thing.  I crawled from the gurney to the machine table.  She explained it would be about an hour in total, asked what music I liked and put the headphones in and clamped my head in place on the machine.  I couldn't open my eyes.  I was petrified of puking in the MRI tube.  She put on my country station and it was so weird that I was hearing the 5 o'clock traffic report.  How am I here?  I should be finishing up at work? How has this happened?

I came back from the MRI to Kevin's warm hand on me and knowing he was there made it all okay.  They moved us into a room, C6, a holding area sort of, but it was a room and more private then the curtains in the ER.  Kevin called this purgatory, the place between the ER and a regular room.  It was called AEU, which we never really understood why it was called that.  They moved me from the gurney to the soft and squishy bed.  At that point it seemed the most comfortable bed ever.  They hooked up a heart monitor and ran another EKG on me too.  It has been over a week and I still have glue from the multiple pads stuck on me.

We were introduced to our nurse until 7pm at least, her name was Nancy.  She was very nice.  She explained a little better what the medicine is and the schedule of medication.  She gave me the shot of Phenigrine which is a pretty potent nausea medication, hurts like hell.  I am bruised from the shots still a week later.

The hospitalist had come in and said it was most likely vertigo, the MRI was good, but they wanted a neurology consult first before they would treat the vertigo.

I was given applesauce and ice chips to try to keep down.  At this point I wasn't able to get up to use the toilet, there was a bedside commode I could use.  This left Kevin having to put a bed pan under me.  A bed pan.  Wow, this is marriage.  Through sickness or health. It was so uncomfortable to pee in the thing, but I had to.  I couldn't sit up or stand up to transfer to the commode beside the bed.  I would have a hard time going sometimes so he would have to dump water from one cup to the other to make running water sound so I could go.  One of the aides would put a diaper in the bed pan for easy clean up, which made a big difference for Kevin helping me.  I call them briefs from working in the SNF, it is a more dignified way to call them vs a diaper.  At one point we had ran out of briefs and he asked someone going by if they would bring in some more briefs.  A woman came in while he was gone and said, "A man told me to bring in some of these" and she laid them down.  They were industrial strength and of hideous look, they were underwear.  Yep, underwear.  Thanks....

At some point, Kevin had to leave to let the dogs out and get something to eat.  The boys ended up going home with their grandparents as their mother was out of town.  I was feeling so bad for all the external chaos this caused.  I tried to sleep while he was gone, I was so exhausted.  I couldn't keep my eyes open.  I decided to call my Mom and let her know what was going on.  She had told me this was another one of those things that happen with age.  She had a few spells herself and can remember her mother having them too.  She knows a lot of people who have them. After learning more about this, this can be anything from a fleeting 20 min spell to days, weeks or months.  It was comforting all the same to talk to Mom.  This has been the scariest event I have gone through.

He came back and we tried to make the room comfortable for the night ahead.  Kevin had been looking up information on the internet and trying to understand what was happening.  He would give me ice chips and help me with the bed pan.  I couldn't get comfortable.  I would be roasting hot and then cold.  I would have 5 blankets on and then only a sheet.  I couldn't lay on one side or the other or my back.  Our night nurse, Ana came in and introduced herself and our night CNA, Imani came in and introduced herself and they wrote their names on the board.  It was reminiscent of when we were in the hospital with Kevin's father.  I was worried so much about Kevin.  We barely just came off of Ben's 10th death anniversary and hospitals and the memories they have for him.

After a restless night, at 0500 the vampires came in to draw blood.  We call them the vampires at work because they come at night before patients have food in their stomach so I understood them coming early.  But, the tech turned on all the lights, comes barreling in and goes about trying to find a vein.  He was pushing on where I had the IV location on my arm from the first IV and asking if it hurt.  Well yes, you idiot it hurts stop pushing on it.  Then he drew blood from another spot.  No sooner did he leave than Iman came in.

She said we need to do a little test of your blood pressure.  I knew what that meant.  She took it while I was laying down, 120/80--normal.  She took while I sat up, 146/102--so not normal--I was doing everything I could to not puke, I was so dizzy and weak, sweaty, hot.  She had me stand up, 114/56--I started puking and going down.  Iman was trying to keep the puke tube on my face, it was the end of her shift and the end of her work week--I am sure she was paranoid to get puked on, I kept pushing it away over and over, I was being suffocated by it and everything happening.  So, did I pass the test?  That is what we call orthostatic hypotension, the test confirmed that.  Until that point we hadn't seen the nurse very much, she by our side then.  I was absolutely miserable.  The nurse was trying to keep me sat up while I puked to keep me from aspirating.  I couldn't do it.  I couldn't do this anymore.  That is when I started bawling, thinking I was never going to get better.

Nurse Ana gave me Phenigrine and helped to make me comfortable. She helped to take off my pants and pee soaked underwear, the puking made me pee.  She changed me and gave us wipes to clean off my face and neck from the puke and sweat.  I was so miserable.  She told me she wanted to stay ahead of the nausea with giving us the meds ahead of when they were due to stay ahead of it.  They came in and did another EKG too.

Next came a loud CNA named Jeff who was bringing me breakfast.  A blob of eggs, yogurt, muffin.  Uh nope.  I would try oatmeal.  I asked him for some butter and some sugar.  He brought it in and Kevin helped to put it together.  When he opened the butter it was frozen and launched out onto the bed.  We laughed but still used it!!  It was a good laugh in the midst of all of this.

We were waiting to see the neurologist because the hospitalist said he wanted the consult.  He finally came in and we were not impressed.  He put on his gloves, scratched his head and grabbed his pen.  Sort of defeats the purpose of the gloves.  I explained what happened, he asked questions.  Didn't seem to comprehend how a 44 year old woman who is an endurance athlete and in great health isn't on any medications.  He seemed to perseverate on the 12 mile hike on Sunday, which had nothing to do with what happened.  He spoke of the MRI showing an issue with one of my carotid arteries.  That it showed a possible tear or dissection, that they would need to do more MRIs and set up for a consult with the vascular surgeon.  He didn't seem very confident in anything he was telling us.  We asked further about this tear issue and he said, well you could take aspirin or blood thinners.  It isn't a big deal.  Our confidence in his guidance was non-existent.  He told us there isn't an ENT at the hospital.  Nobody, not one person even bothered to look in my ears.  Even if you go to your normal doctor, they always look in your ears, even if you are there for a sprained wrist.  If the problem is in my ears, why is there not an ENT at this hospital???  So he left, good riddance and it left us with, now what?

A tear? Blood thinners? Is this the end of my running and endurance life now too?  A surgeon?  Surgery?

A tech came to take me for another round of MRIs and CAT scans.  This time I couldn't transfer to the MRI table, they used a slide board to move me.  I tried to help, I couldn't.  This sucks. At least the ever so kind Nancy was there.

Back to the room again to wait for the vascular surgeon to look at the scans and come talk to us.  I posted a message to facebook asking for prayers and good thoughts.  I was so worried about everything.  About Kevin, will I be able to work again, can I help provide for my family, will we be able to do all of the things we love again?  Why is this happening?

We waited all day for a doctor to speak to us.  Kevin looked up who the vascular surgeon was and he was the best in Tucson so that gave us hope.  Now if only he would come to see us between his surgeries.

Through out the day, I tossed and turned and we watched the clock.  They would check my vitals and my blood pressure kept running low, so I tried to stay up on eating the ice chips.  Lunch came and it was some chicken tortilla soup, crunchy things for the soup, cheese enchiladas and flan.  I had some of the soup and the crunchies and we both had some of the flan, we have never had flan so our first experience was weird.  We don't want to judge with it being the hospital flan..  Kevin had brought snacks from home, but he really needed a real meal.  He went home to get some food, shower, change clothes and feed the animals.  I found out later that on those drives home from the hospital he just cried and cried.  He hates to not be able to help me, he felt so helpless and broken.  It breaks my heart that he was going through this.

The night came and our night nurse Ana was back.  She was just lovely.  She talked to us about the medication regime and that they wanted me to start taking the mecclizine again.  We never heard anything about the vascular surgeon and hadn't seen the hospitalist again.  I don't know if that was why they hadn't been giving it to me previously?  The last time I had it was when the nurse tried to get me to take them right when we got into the ER.  She also wrote down the schedule of the medication for when I was to get things and what I was to be given.  They finally took the heart rate monitor off of me too which was a relief, it was so uncomfortable.

With the Phenigrine, she gave me two little pills, mecclizine which is what helps with the dizziness.  The Phenigrine makes you sleepy and dizzy, which is silly for what it is supposed to help with. I would get those every 8 hrs. The Zolphran was given in my arm port for as a carry over for nausea I would get every 6 hrs.

That second night I slept significantly better.  She came in and gave me meds and they checked my BP which was still running low, but not dangerously low.   When I woke for breakfast the next morning it wasn't due to blood draws or blood pressure testing thankfully.  I asked Kevin to help me change into a shirt and help me brush my hair and put on some deodorant.  It felt good to look more human.  I finally got my contacts out too, they were glued to my eyes, but with my eyes closed so much they weren't too dry.

They took me though for more MRI scans and a CAT scan where they gave me fluid in my arm that was really warm and made it feel like you peed yourself.  However, this time I could keep my eyes open and saw the tech Nancy for the first time.  They were doing more focused scans on the same area of my carotid artery.  Which we still hadn't heard anything about.

Back to the room to wait.  Eventually a very useless doctor came to see us.  We caught his name as McNipple, it was McNichols.  We shortened it to Dr. Nipple, that is level of respect we had for him.  He was the hospitalist.  At this point I was able to keep my eyes open and deal with the light, so we kept the door open so I could try to adjust to the movement and light.  I performed two transfers to the bedside commode with the help of the nurse and Kevin.  It was progress but, it took both of them to do it.

Dr. Nipple came in and introduced himself, asked some questions about what happened, the usual.  He said, well you are taking all the medication, you can take these medications at home.  There is no need for you to be here. We asked about the artery, he said it is a congenital anomaly, nothing of concern.  I said, what about the fact that I can't sit up, stand up or transfer to the commode without my blood pressure dropping or puking.  I said I don't feel safe to go home.  He said, oh you will be fine, we will have PT do an eval and if you are safe to go home you will go home and if not then you will go to a SNF and left the room.  We heard him in the hallway, "get PT in there to an eval, she is taking up a bed we need, she is faking"  The nurse that took over from Ana told him, no she is not.  I have seen her white knuckled and covered in sweat.

Kevin and I nearly lost our mind.  Me.  Faking.  You think I want to feel like this?  Not one fricking doctor asked me to stand up.  If he did, he would have gotten puked on.  Sure I look fine laying there, I look stable and perfectly fine.  Yeah, go ahead and bring PT in here and I will show them also that I am puking and can't stand up!!  I was so pissed.  Kevin and I were ready to just say F it and leave with puke bags.  Funny thing is we asked about PT and they said they didn't have inpatient PT, they only had outpatient PT.

We heard the first PT guy come up and our nurse telling him that PT was ordered the day before at 4:30pm, it was almost noon the following day.  He was arguing with her and she showed him on the computer.  Then we heard him say, I am not going to eval her, it is going to be a waste of time.  I will get someone else to see her.  Since when did I become a problem to see?  I was getting more and more mad!!

Then finally a PT by the name of Raymond came in to see me.  I let him know that I worked in a SNF and knew what therapy was etc.  He was very nice and told me that he was going to do a procedure called the Epley on me to see if it would help.  We read about the Epley and many of my friends commented on why don't they do the Epley on me.  Well Raymond who has been there all week said, I am going to do this on you.  He explained what he was going to do and it seemed like some sort of thing you would see at a religious ritual where they flip you back into the water.  He flipped me back across the bed so my feet were touching on one side and he was supporting my head and neck at the other when he flipped me back my head was turned to either the left or right and her kind of shook my head to get the crystals in my inner ear back in place.  It was such a weird feeling.  But when he started it, my head hurt on the Left where my migraine had started on the Wednesday prior when I had the first weird spell.  So, I thought it must be doing something good.  He did it 3 times on each side and then had me stand up.  I could stand up with some rocking, but it was better then it had been for sure.  He asked if I wanted to try walking.  I said I would, I was nervous because we didn't have a w/c to follow us in case I went down.  We went out into the hallway and I spotted out a point that would be the length of our house as a goal to make it to.  I think he thought I was only going to go a few feet and quit.  He had said you don't have to go very far on my account and Kevin said, she could go all day, she is an endurance athlete.  About then, we had reached my goal point and I said we could turn around.

I got back to the room, pretty exhausted but relieved I could do it.  We asked how come they didn't have him come see us sooner.  Why have me go through all of that misery when there is someone in the hospital that can help me?  It was ridiculous.  He said he would have gladly helped if they called. After he left the discharge process began.  The idiot neurologist came in to see us and was dumbfounded how I was doing better.  Well, dumbass if you knew all the resources available to help your patients I would have been better sooner.  He didn't even know what the Epley was?  Where did he go to school??

We asked to have a walker to go home with, I wasn't prepared or confident in my safety to go home without one.  The case manager came in and she was very nice and brought us a walker to take home.

The nurse organized all the discharge paperwork and Kevin moved our stuff to the car.  I grabbed the plug for the phone out of the wall to take with us as the nurse was pulling out of the room.  It was weird in the room because there are no windows so day is night and night could be day.  It was always dark.  As she pushed me out and down the hall to the exit I had to cover my eyes still.  All that moving input was disorientating.  We pulled outside and I told her that was Kevin pulling up, my knight in shining armor.  They helped me transfer from the w/c to the truck and we were off.  I covered my eyes again and tried to open them in small doses to adjust to the brightness and movement.

Then we were home.  50 hours of hell in the hospital, but we were finally home.  Kevin got the walker out of the back and opened the door for me to get out and for us to navigate getting in the house with a small step into the house.  It was wobbly and shaky and we made it to the recliner, which seemed like a good idea until it rocked backwards.  Kevin plugged in my phone by me, had a puke tube and water and the remotes to the tv.  He was going to go get the medication, a shower chair, some groceries and see the boys.  I told him I will be okay.

It was really good to be home, I really didn't know what the journey would be from here, but at least we were home and not having to wait on doctors for information or anything else like that.  At least all of this could be in our control.  Kevin got back and went to the task of putting the shower chair together.  I desperately wanted to be clean.

Everything I did was with Kevin's help.  Going to the bathroom I used the walker to get in there but needed his help to make sure I got up okay because I would get disorientated and dizzy.  For the first shower, we weren't sure where to have him stand or how he could help.  I rocked back and forth and I would use his arm like a grab bar to stand up to clean my bottom, the rest I used a hand held sprayer.  We have gotten pretty good at it now.  I still don't shower on my own 10 days later.  I can stand but when I wash my head and tilt my head back I get wobbly and have to hold onto something for help.

We eventually made a spot at the couch with one of the folding tables for my stuff.  The kids had to get adjusted to me having a walker in the way.  The animals had to adjust too.  I would tell them to go through it and they would go.  Sometimes they would just freeze and not move.  Not very helpful.

The rest of the first day home was just resting on the couch and watching TV and having a shower and dinner.  Kevin had retrieved our stuff from the paramedics fridge so we ate angel food cake and berries for several days.  Kevin bought a lot of pudding too, I guess because I ate pudding one day in the hospital and I didn't share with him, so it was a good item to eat.

Wednesday night Kevin went to the car and dealt with my yogurt smoothie that had been in there since Monday.  Scary.

Our wonderful friend Jennifer Cambell ordered pizza from Pizza Hut to be delivered to our house for dinner on Thursday.  It was fantastic, we didn't have to worry about dinner for a couple nights.  We met her through running, she is such a wonderful and supportive friend.  We are blessed for her friendship.

The next few days was about calling insurance companies, benefits company, hospitals for records, the base for a referral, referral management....all calls with leaving a message and waiting for call backs.  It was insane.  I was so thankful Kevin was able to deal with it all.  It was all so overwhelming.  It was about coordinating with our friends to take the Cubs baseball tickets from us so they could enjoy the two days of games we were going to miss.  I thought I would be better to go do it, there was no way.  I felt so guilty and just dreadful for missing this.  Cecilia was already scheduled with her cat sitting job to have someone cover her while she would have been gone to the game, so she would spend the weekend with us.

We had been coordinating with the hospital to send records to the base so they could get going on the referrals to Physical Therapy and the ENT.  When we would talk to the base they would say they hadn't received them when the hospital said they sent them.  So on Friday we went to the Northwest hospital records and got them and drove to the base to deliver them and get something in motion.  It is easy to hang up or ignore a call, it is much more difficult to ignore a person in front of you.

We seemed to get everything going and we would have approval for the appointments, which we already set up.  The earliest we could get into the Physical Therapy was 6 March and for the ENT was 9 Mar.  We got things sorted out with the benefits folks, we just had to fill out some paperwork online.  Friday was a lot of walking and I was exhausted.  It took so much concentration to focus on each movement and trust my feet were on the ground.  I always felt like I was floating.

I received an email for a continuing education that I thought was interesting with the timing of it and it was an email for a 2 day training course in Phoenix on 10-11 March on Vestibular Rehabilitation: Evidence-based evaluation and treatment to decrease dizziness and restore balance. Differential diagnosis for peripheral vestibular dysfunction including BBPV, vestibular neuritis, labrynthitis, bilateral vestibular hypofunction (BVH), Meniere's disease, acoustic neuroma, and perilymphatic fistula.  Now, at this point the hospital diagnosed me with BBPV, I haven't seen the ENT to know what I have specifically, but, with having experienced this, whatever it is, has made me a better therapist.  I can further increase my skills and knowledge to better treat patients who are experiencing these type of episodes.  This whole experience in whole has taught me a lot of lessons about how I can be a better therapist and caregiver.  I have definitely used a lot of the tips that I tell patients to be safe, with sitting down to do your care, having everything in one place, washing your legs with your legs crossed over each other vs leaning over to wash them.  So many things.  I have also been a very stubborn patient, as I am terrible at asking for help and receiving help.  I felt bad because Kevin has been trying to help me and I am trying to do it myself.

Cecilia joined us for Friday, Saturday and Sunday.  Unfortunately she had to experience a rough time.

I hadn't pooped since Monday.  It was a major concern.  I think it was a combination of laying down for so long and lack of movement of my body.  Kevin said I should go running, that always works.  He had jokes.  So I had Kevin pick up some Milk of Magnesia, like what we give our patients.  Well, it wasn't working as quickly as I would like, so I drank more and again some more.

Eventually the poop well broke.  Saturday is now known as poop day.

I named my walker Calamity Jane, I don't know why, it just seemed appropriate.  Cecilia said to me, "mom you are getting really fast with Calamity Jane".  Having her and Kevin deal with my poopy pants was a deal breaker, it wasn't going to happen!!

I also had another moment of tears.  We had ordered new hiking boots and running shoes for Bataan and they came in.  I put them on and cried.  I need to be back out there on my trails.  It is spring time in the dessert and I am missing it trapped inside this dizzy body.

On Sunday we planned to support Kevin and Matthew while they hiked on the trails at Sweetwater for 10 miles.  I knew it would be hard to be out there, but the race is still going to happen, with or without me walking it, they need to train.  I had decided to bring the hiking sticks just in case.  I love being out there and Cecilia was with me, so I thought I would give it a try.  I had to pee really bad.  So we took both sticks out and we walked to the wash so I could pee.  Cecilia had to hold me by my hands as I squatted so I didn't fall over.  It was great Mother-Daughter bonding.  As we were walking back, I went on for a little longer, it felt so good to be moving and it was a confidence booster that I was doing it, albeit really awkward.  We didn't go far because there were a lot of people out on bikes and I didn't want to risk a fast movement and fall.  I haven't fallen with this whole thing and I didn't want it to happen out there.

I was depressed though.  A week ago I did 12 miles uphill on pavement with 40 lbs on my back and here I did 1/4 mile with sticks all wobbly.  I have tried every day to focus on the positives through out each day.  Each day I recount what was positive, sometimes though, it is hard to do.  We left the trail and went to Eegee's for lunch.  I had to go to the bathroom and wait for the handicap toilet.  I went out to our table and ate and Kevin made a joke about an older lady who came in and said, is that you?  It hurt me.  I wasn't seeing the humor.  I said I am going to be walking Bataan with you two and cross the line with you!!!  Matthew, meaning no harm didn't believe me and looked back and forth at Kevin like he would say no.  I was just so sensitive and depressed.

We got home and I took a nap, I was done doing anything and being positive and nice.  A nap I will refer to as the magic nap. I am not a nap taker typically.  I will say I want a nap, but I will just lay there and not sleep.  This was like an almost drug induced coma nap.  I was watching sappy Hallmark movies when I fell asleep and I guess all that sweet dialogue lured me to sleep to rest peacefully.  I woke up and felt great.  Naturally as I went to move I was wobbly, but I did feel a lot better.  I decided to start working on the blog for our 24 hour Remembrance event and was feeling emotionally a lot better.

Kevin took the boys with him to take Cecilia back to her house.  I told Cecilia I just didn't have the patience to go and she understood.  I made some headway on the blog and asked Kevin when he got back if I could take a shower.  I really wanted to shave my legs, he had a look of horror that he would have to do it.  I ended up doing it with my leg straight out on the wall in front of me as long as I didn't need to bend over I was okay.  I looked back on the day with success.  I walked a 1/4 mile and I shaved my legs.  I decided to start just using the hiking stick as a walker and folded Calamity Jane up.

Monday came and I told Kevin I want to go on the dog walk behind you with my hiking sticks to be safe.  It would be a mile for the dog walk.  I also decided to stop taking the medication to see if I could manage without them.  I was concerned they were contributing to the constipation too, I wasn't going as normal as I used to.  I did it and was okay, I looked a little crazy with hiking poles on pavement but, I did it.  We didn't do a whole lot that day with getting the boys off to school, making more progress with insurance stuff and watching tv.  We went to Northwest hospital again to ask a question with regards to the discharge paperwork I needed to send off.  Afterwards we went to a Chinese Buffet place for lunch and we picked up the boys from school with the walk we do from our parking spot in the other neighborhood.  A week ago I was there with a 3 mile walk and a ruck sack.  How quickly life changes.

Monday morning I inquired whether anyone dealt with the maroon bag as it didn't make it into the paramedics fridge.  Kevin didn't know it was supposed to.  Cecilia said she would deal with it on Sunday but forgot.  It was trash day, so I took the maroon bag down to the trash and dealt with the contents there.  Everything in there was a refrigerated item.  Scary.  You just never know what is going to happen.

Monday night our dear friend Diane Gonzales brought us dinner, a yummy chicken Alfredo and decadent pie from Fry's.  It was so sweet.  She is such a kind and giving woman.  We are so blessed to have her in our life.

Tuesday I told Kevin I want to walk behind you on the dog walk without anything supporting me.  I just want to walk and see how it goes.  I looked drunk.  I still couldn't really feel the ground beneath me and would lose my balance and take a couple steps to regain it. But, I did it. We needed to fax some paperwork off so we made a trip to Kevin's work.  I was faced with stairs to go into the building.  It was weird but I did it and we faxed off the paperwork and made the journey back down the stairs.  We had to do some more errands of going to Target and Costco and I used the cart to support me as we went.  We had some lunch at Famous Dave's BBQ and had a nice day.  Kevin dropped me off and I called about why the Physical Therapy referral was denied.

They told me on the phone from the health insurance that the Physical Therapy for BPPV is not deemed medically necessary and would not be approved even if I went through the process of resubmitting it.  It is on some exclusion list of therapy not deemed necessary.  Wow.  Let me see, the only thing that has helped me in this process was Physical Therapy!!!!  One dose of Physical Therapy???  Is it necessary for you to be able to get up out of bed, not hold onto anything as you walk by yourself to the bathroom, go to the bathroom, get up without worry of falling, having a shower by yourself, going to work, driving, living, existing--is that necessary for you?  Who gets to make the decision to make the list of what is necessary?  I can bet that if they went through what I went through they would probably change their minds!!  I was so mad.  Hurt. Depressed. Pissed.  I just cried.  I cried that deep heavy cry where you can't breathe then dry heave and cry some more.  I am so fucking done with all of this.

I went to the bedroom and laid down and cried more.  I was supposed to see them on Tuesday, to finally get some relief and now nothing.  Nothing until hopefully some relief on Thursday.  That is 9 more days of this shit.  I felt like I wasn't going to get better.  The feelings of "better" were so small now that I felt like this is my life.  I can't trail run again.  I can't hike again.  I can't do Bataan.  Why did this happen to me?  Why??

Kevin got home from picking up the boys and he saw me in the room and I told him what happened.  I didn't want the boys to see me so upset.  I just laid there like a blob and felt shitty.

Eventually I got up and put sappy Hallmark on again and decided to do what helps me most when I can't run and that is to write about it.  So I started to write this.

Wednesday I decided I would try to walk the dogs on my own.  Kevin had training he had to go to and he needed to start work again.  I was only going to take one dog at a time and thought I would be more balanced if I took them both.  So I took them both and it was okay.  I took my phone in case I fell or had some sort of incident.  But, it went okay.  I think the dogs knew that I was not 100%.  I got home and text Kevin and he was mad I took them both at the same time.

I also had Peggy and Emerson Knowles (Peggerson as I called them) coming over that day so I needed to clean up the back porch for their visit.  Peggy is allergic to the cats.  It was a great distraction to clean and do something not related to all of this mess.  I cleaned inside the house too, it was great.  I probably overdid it a little bit.  Peggy made the most delicious pulled beef BBQ and macaroni and cheese we have ever had.  It was wonderful visiting with them too.  Peggy has prayed for me the whole time, understanding how it feels to be fine one day and not the next with being the survivor of a stroke.  She is amazing, we adore her!!  Emerson sent messages of encouragement every day since this started.  In times of trouble the people who are there for you will shine.  I have really learned who my real friends are in this process.

Our friends at The Compassionate Friends Group sent us a card that was very sweet and I had many people comment and posted their well wishes to me as this encompassed our life.

The boys also got me flowers and wrote me cards.  Matthew being the smart-butt he is decided to write stuff on the back of his card that would make me dizzy.  Thoughtful.

On Thursday I walked both dogs by myself again and carried my phone.  Today is that day and I feel like it was a great break through as I was more stable and I could feel the ground beneath my feet.  I am grateful for that feeling.  It has been such a strange feeling to feel like you are floating all the time.  I think I might make it through this.  I hope to see how driving goes in the next couple days and I want to try to do a hike with the poles this weekend.  I am hoping to go back to work on Monday too.  I will use our rehab tech in the beginning for transfers until I know the movements are safe with my head.  It is hard to describe how my body feels in all of this.  How my head feels.  Each day it gets better and better.

So in the end of all this, I have learned how precious life is and who is there for us in time of crisis.  People I thought would be there, didn't even take the time which is very sad.  My admiration and love for my husband constantly grows.  I am so proud of him and to have him as my life partner to help me through anything that is presented to us.  I think because of everything we have done as a couple this was easier to get through than if we have never faced adversity together before.  We never in a million years can know what tomorrow will bring, how we deal with it and approach it will be the success or failure of getting through it okay.  This journey doesn't end here, I am still not 100%, but, I can deal with it better and face it head on with confidence that I will be okay.  With the love of my family, my amazing friends and faith in the positive....I will be okay, we all will be.

Week 2/3--Just Google it--losing my Father-In-Law Jack Trapp

The writing is larger on this one for ease of reading.  Sorry, it is so long.

This week has been the hardest week of my life to date and it seems it isn't going to end anytime soon.  This is the week we have watched the incredible man I know as my father in law, Jack go from a lively and healthy 82 year old man to a man holding onto his last breath in hospice.  As I sit here now, he is laying in hospice care beside me, dying.  When I started writing this it was August 21, 2016.  Jack passed away at 12:50 am (August 22, 2016) the night I started writing this.



Last Sunday when I wrote we had to cancel our Sunday long run to go to the hospital because he was getting admitted with abdominal pain.  Kevin and I went there first thing in the morning, worried and unsure of what to expect.  We spent the day with him and family listening to the story of how he got there.  Patty, his loving girlfriend brought him in on Saturday, the 13th of August in the evening  after a lot of convincing to go in.  He had been stubborn with pain in his stomach and hadn't been eating or having bowel movements.



He got admitted on Sunday, the 14th of August and they did an x-ray and saw he had some kind of blockage.  They put a tube down his nose called an NG tube which sucks out the fluid in his stomach/intestines that could have infection in it and it will suck out any abdominal gases too that could be causing the discomfort.  He was also told no food and only liquid nutrition via an IV.  They said they would wait and see if it the blockage would shift.  He experienced some diarrhea and the pain continued.  Monday was a day similar to Sunday.



The next day, Tuesday the 16th of August, they looked again and still no movement and further discomfort.  They hypothesized it was from the pain meds from his hand surgery.  But, they said, if it isn't any better by the next day they would be looking at surgery.



Wednesday, the 17th of August came and it was full of "I forgot, let me find out, we will see, I am waiting for an answer"  All day they went through this until late in the day they said he would have surgery the next day but couldn't say when?  It was so incredibly frustrating as Jack had been there since Saturday night and here it is Wednesday and he is in great pain and not eating.  They finally gave him an answer which was to be on Thursday at 9 am.  Finally.



Thursday morning, the 18th of August, Kevin and I got up to be here at the hospital at 730 so we could see him off in time since his surgery was supposed to be at 900.  We came into the room and Jack was sitting up in the chair by the bed, happy and looking great, best he has looked all week.  He brushed his teeth, washed his face, went to the toilet.  He looked great, raring to go for the surgery.  He was making jokes even about getting the bed bath by the nurse and how much he loved having his back done.  The guy came to get him to take him to surgical and Jack asked if he was busy and he had said yes and he said you must be because you were an hour late. He even told Grant to get out of the way because he was going to surgery. We all laughed and kissed him, told him we loved him and said we will see him later.



As a clan we all headed down to the waiting room for the day.  It was Patty, Kathy, Grant, Kevin, Ken, myself and later we were joined by Lindsay, Anson and Kyla.  We took up quite a huge area, but we were having a good time.  One thing to know about our family is we spill a lot.  There was a spill in Grant's truck with some coffee. I spilled coffee on myself.  Kathy spilled something on her sweater.  Then we get settled in and there was another spill.  Kevin and I decided we should get some breakfast since it was going to be awhile.



We went to Kneaders which is a bakery place which we have come to love and have eaten there a lot this week.  A lot.  We had a delicious breakfast sandwich and brought back a selection of sweet rolls for everyone else, knowing that Patty had not eaten and most likely Kathy didn't either.  I managed to have another spill with coffee on the way back to the hospital.  The lid wasn't very secure. We found out that Kathy, Patty, Ken and Grant all went to get something from the cafeteria.  Kevin can't go to the cafeteria after dealing with the loss of Ben.  It is just too much.  Our sweet rolls were not going to go to waste though. 



While we were waiting for Jack to come out of surgery we had a couple really crazy things happen.  We were near the elevators and there was a woman there with a small child, maybe 2 or 3 years old.  Her mom was waiting at the elevators to open and the little girl must have had her hand on the door because as it opened it pulled her small hand with it and it got wedged between the door of the elevator and the area the door opens into.  She screamed out help as she couldn't get the girls fingers out and the auto door open wasn't working.  So Kevin and I jumped up to assist and got the door open and her fingers out of it.  It was quite a harrowing experience.  Later there was a couple people who got stuck in an elevator for about 45 minutes. 



While we were waiting for Jack to come out I ran into a dear friend of mine, Tiffany who lost her child at birth last year.  She distanced herself from the world for obvious reasons and we haven't been in touch.  She is now expecting another child and I am so happy for her, but she has been struggling with her grief.  I shared with her information for the MISS foundation for children lost at birth or pregnancies that didn't go full term.  I hate to think things happen for a reason knowing now the results, but I am glad we were able to meet her.



At one point a friend who knows Jack and Patty well came and let us know how things were going with the surgery.  He said it went well and that it was from diverticulum that burst and was infected and the surgeon was removing everything that was infected, but he was doing well.  At this point diverticulitis became the subject of discussion.  His diet would have to change, Kathy and Kevin would need to be scheduling colonoscopies to make sure they are okay too.  Ken had an issue 3 years ago for the same thing, except his made him very sick and infected his blood.  He recovered and had the colostomy bag for 4 months.  Patty was getting more and more concerned at this point about the diverticulitis and why it wouldn't show up on the x-ray, if it would show in an MRI and why they didn't do that.  She would go in circles about it.  We explained multiple times the only way to determine what was wrong was to open him up.  No matter what he had to be opened up.  There was a blockage and that was very evident on the x-ray and the standard scope of practice would be exploratory to determine the cause and fix it.  Multiple times this was explained.  We struggled through this entire week and event to get Patty to eat and listen.  She just wasn't handling it well and we understood that entirely.  We love her deeply and were so worried.  It was a blessing when she was able to come to terms for her own piece of mind and comfort.  I felt bad that I was stressing her out with trying to help her come to terms.  It was a stressful week for all of us and the journey ahead is hard.



We finally had a visit  from the surgeon who explained quite quickly what he did.  He said he removed 2 feet of the small intestine, 10 inches of the lower intestine and some of the colon and he placed a colostomy bag which down the line could be reversed.  Everything sounded well and he was moving to the recovery area.  Fantastic, everyone could breathe easy and he was going to be okay.  By this point Lindsay, Kyla and Anson joined us.  We had a call for Patty to talk to him in recovery and she spoke with him, he said he was doing okay and he loved her.



They transferred him up to his room that he was in before and we would be able to see him.  We moved all of our junk to the waiting room upstairs and went in to see him in small groups of two.  He was hooked up to oxygen, had the NG tube in and his incisions were wrapped up with an abdominal binder.  He looked good for having a major surgery.  He was groggy and in and out of it.  He had a morphine pump that he could push the button on for when he was in pain.  It was made clear that only he could push the button and nobody else.  It is a regulated amount without a worry of overdosing so he would get only the right amount.  He was asking for ice chips which would give him.  He was in and out of it, but it was expected with the anesthesia.  Ken left shortly after we got up to the room he was in before, he had work to do in Heber.



The surgeon came bellowing into the room, talking really loudly and boisterous.  We had been talking in low voices and whispers to allow Jack to sleep and I thought this guy is a real piece of work being so loud.  He asked how he was doing and tried to talk to Jack but at this point he was snoring pretty significantly. He was concerned about him being so sleepy and wanted the morphine meds stopped.  He didn't want him to have the ice chips either. We asked him about the surgery because he had talked so fast before.  We showed him a generalized pictured of the stomach area and asked for an explanation. 



He told us to Google It!!  For real.  Google it.  He said it was a Merkel's diverticulum that burst.  I can tell you the Google didn't tell us what he did.  I couldn't believe that he wouldn't sit down and tell us.  The hospitalist explained it completely in the morning thankfully.  He explained that it burst and the infection from it went from the small to the large intestine and it was all contained within the walls of the intestines so no chance of the infection spreading.  He said that 2% of the world's population get this.  Later, Patty thought and perseverated on that 2% have this burst and have a stroke following and went right back to the MRI etc. route.



Anyways, Kevin and I planned on going home after Kathy went home and had a shower and could feel human again and come back.  Patty was struggling seeing him like that and was focused on the MRI etc and couldn't get past that part.  While she was gone Kevin walked Patty to her car because she was so tired and getting confused so she could get some rest.  She forgot her phone and that had to be driven to her house too. He got us some pizza for dinner and we waited for Kathy to come back from showering etc. When Kathy got back we headed home.  Knowing that Jack was resting and he was going to be okay. I had made a call to a friend of mine in the medical field who is familiar with all of the Skilled Nursing Facilities for the best one for him for his needs and care for recovery.  We made a plan to look at the facility in the morning and sort out insurance coverage etc. 



Friday morning, the 19th of August we went for a small run to see the boys at school and made a plan to do flights of stairs on the hour as we spent the day with Jack.  The sitting around is tiring for some reason and we were eating terrible.  We go to the hospital all planned for the day in some exercise clothes.  I had told Kevin to change his shorts since we would be doing the stairs.  I would feel bad about this and thankful later.  We had also printed out a picture of the intestines and thought we would ask the surgeon to use some colored pencils to explain what he did.  We said after we parked the car, "what adventures await us today?" given how the waiting room was quite the scene.



When we got into the room we saw that Jack was sleeping very deeply still.  Kathy reported they tried to wake him up and he wouldn't wake up.  He had no meds on board and was on 3 liters of oxygen.  He was sleeping so deeply and just couldn't be woken up.  We thought that maybe it was because he was so exhausted and depleted going into surgery.  He had a monitor for his oxygen and heart rate which I was watching for any changes given how hard he was snoring.  Our plan was to get there for Kathy to go home and shower and whatnot.  At the same time Daisy, Grant's mom was down stairs getting a colonoscopy done.  Kathy went downstairs to see how she was doing.



Meanwhile, upstairs Jack's oxygen kept on dropping. I got the nurse in and she upped the level and it wouldn't come up.  So we put the nose part in his mouth and it wouldn't come up unless I held his mouth shut around it.  She said she would get a mask for him and try that.  We put the mask on and it was stable for a little while.  We had already called Kathy to come upstairs.  At one point they had respiratory come in and did a breathing treatment.  Vern and Barb L. came in for a visit and stayed for awhile.  I had been tapping on his chest to get him to clear his congestion to swallow.  He seemed to be choking.  Barb had leaned over coughing as if to encourage him.  It was cute. 



He continued to struggle with maintaining his oxygen.  One nurse came in and said I will get another mask as his monitor was dropping.  I wasn't okay with how long he was going to be gone with such a low level of oxygen so I cranked his oxygen up to 8 Liters.  When the nurse came back with the new mask and it didn't work much either the hospitalist doctor was called in.  Dr. Weiss is a fantastic doctor and has compassion and understanding.  He was completely perplexed as to what was going on.  He ordered a chest x-ray and a CT scan and for him to be moved up to a higher level nursing care area where he would have 1 nurse to 3 patients.  We gathered all our stuff and headed up to the new room area which is a secured area. 



We got up there and he was settled into his new room and the nurse came out to talk to Kathy and Kevin to let them know the rules of how things work up there etc.  Kathy went with Jack with the nurse for the CT scan also.  At some point Kevin and I left to get Cane's to get Patty and everyone to eat.  The timeline of things gets a little crazy through this time so forgive me.  We got back and I think that is when the nurse got Kathy to tell her the results of the CT scan.



The way this area is set up is a secure area for both privacy and infection control and safety of the patients. There is a door that can only be accessed by a buzzer to the nurses station or to someone on the inside to let you in.  We had quite the group at this point.  Stacy and her Kevin, Grant, Kathy, Kevin, Patty and me.  Lindsay and her children went home after the surgery on Thursday. 



Kathy came out from the secured area and I could tell that the look on her face it was bad news.  I gave her a hug and she said I need to talk to Kevin.  I followed her to Kevin and she said, "CT scan showed multiple strokes".  We held another and just cried and cried and cried.  There is no coming back from this.  With multiple strokes it affects multiple parts of the brain and given he hasn't woken up and all of the other issues present, it was the end.  It was like a shower of blood clots on his brain.  They can estimate that he had them starting when he went into that deep sleep around 7 or 8 the night before.  One area affected was pretty significant as it controlled his swallowing.  Every lobe in his brain was hit, mostly his brain stem.  Typical treatment would involve a type of anti-clotting agent to break down the clots, but with Jack having open incisions, it is not an option.  If he had the stroke on its own and the anti-clotting agents were given, there were so many areas affected the outcome would have been the same.  I said he had the world series of strokes.  Go big or go home.



Discussions of DNR were brought up and decided upon.  Phone calls made to Lindsay, Sean, Ken, Zach, Josh and multiple other family members.  We were not confident he would make it through the night with a prognosis so severe.  The neurologist tried to encourage other methods to determine why he had multiple strokes and further testing.  No matter what the outcome would be the same, so why put him through all of that. The surgeon who performed the operation came in and he was also devastated to see that Jack had declined and was laying there in the condition he was in.  We told him the incisions and colostomy looked great and thanked him for a great surgery.  I can't imagine what must have been going through his mind.  I am sure he wanted answers too.  We wanted to tell him to google it.  However, the decision had been made.  The decision to provide only comfort care, meaning no more antibiotics, lower his oxygen to 1 Liter, provide morphine and Ativan for pain only.



Noelle was called and the discussion about the boys seeing him was brought up and William wanted to see him, Matthew didn't.  We asked if she would bring Cecilia too. Cecilia was at home looking after the animals.  She was so helpful through the entire week looking after the house while we had to do what we did.  It was hard to leave her home but, she didn't want to see him.  She wanted to be with us though.  It hurt so much to see her so devastated.  She was so close to Grandpa and loved him dearly.  When they all got there they were in tears and it was so hard to see our children hurting so much.  Matthew changed his mind and wanted to see him.  Cecilia never did see him.  Matthew said something so profound for a 9 year old; isn't it interesting how one life leaves and another one begins, speaking of his wonderful Grandfather and the birth of Anson who at this point was not even 2 weeks old.  Lindsay has a photo of them together thankfully before he went into the hospital.



We weren't sure he would make it through the night so we called everyone to see him.  As the evening progressed the visits from family and friends increased.  Lindsay, Hugh, Kyla, Anson, Sean, Zach, Kathy and Grant's pastor and friends came as well.  The pastor came in and prayed with us and for Jack.



They all came and went.  Cecilia fell asleep on the couch things and everyone was crowded around in the waiting room.  I would stay in the room with Kathy and Kevin and come out on occasion.  At the end of the night for most everyone it came down to Kevin, Kathy and I who watched and waited for his last breath.



The nurses on this level were the most compassionate and caring nurses I have ever met.  Just amazing.  Our main nurse, Gina was incredible and humble.  She had a trainee nurse with her who was just as amazing.  We knew we were in good hands with these lovely women.  They told us there was the possibility of having to move to another room because this was an ICU room so they would need the bed.  Which was understandable because Jack was in comfort care vs immediate care to save his life. 



The tears wouldn't stop coming.  It got to a point that I couldn't see anymore from my contacts being so messy from crying.  Given we had no idea we would be there for the night (and many after) I didn't have solution or anything so I took them out and threw them away.  At some point in the night the decision was made for everyone to go to Jack's house and get some rest.  A big slumber party for them and a night unknown for the K gang.



Kathy being the old hat at hospitals could find the coffee anywhere.  This time Kevin and I went to seek it out and it appeared they only had decaf.  Well that needed to change so I cleaned out the regular carafe which had burnt coffee in it and got us some coffee going.  I don't know that I have drank so much coffee as I have this last week.  The new shift came on and we met our night nurse #1, Cecilia who was as kind and compassionate.  She did notify us we would have to move rooms at some time and we waited until we had to move again.  Room number 3 since arrival.  Each move our stuff just got put into what bag we could find.



Into the room we go.  Kevin calls this room the dungeon room.  It was like a room forgotten patients are sent to die.  The date of the last patient in there was 12 August and his vitals sheet was in the thing on the wall, looks like he died.  It was dark for Jack's comfort and we squeezed ourselves in there the best we could.  We were so tired.  Just mentally, emotionally and physically exhausted.  We met the new night nurse #2 and she was awful.  She is a person who clocks in and clocks out, it is just a job, no heart or compassion.  We asked her for more morphine for Jack as on the hour he would have a pained frown on his face and start to get all jerky and looked in deep pain.  His breathing continued to be labored and sounded wet and awful.  When she came in she didn't want to give it to him.  She wanted to make sure he was unresponsive and in pain.  She was cold and heartless how she handled Jack.  She lifted his arm up and let it drop to check his response.  Not once, but three times which was completely unnecessary.  She is doing all of this and we are watching her and giving each other looks like WTF.  She goes around the corner to the computer and she was at an angle that Kathy couldn't see she hadn't left the room.  Kevin and I could see she didn't.  Kathy says, "What the hell was that about?"  Yeah, Kathy swore!!!  Knowing she was talking about the actions of the terrible nurse.  At the same time the nurse had turned the lights up quite bright and so I said, "It was the nurse with the lights.  She just turned them on really bright." trying to cover up Kathy scolding her.  Then the nurse starts moving the dimmer light to test what was better.  I just wanted her to leave!!  Awful.  We couldn't wait for the next shift to come in to get rid of this one.



I kept monitoring his heart rate and urine output.  The area in his brain that got affected wouldn't allow him to control his body temp.  He would be roasting hot and then get cooler.  He was sweating but not a normal sweat.  It was an oil, wax like sweat.  Very weird.  We would try to bring him comfort with a cold washcloth on his forehead and it would dry out and we would put another.  I felt like it was my job to monitor and take care of Kathy and Kevin.  Kathy followed all the medical information.  Kevin would make sure we were eating and drinking.  I would check his vitals and help keep track of timelines. It worked for the 3 of us based on our personalities and work history. We are all mission orientated and can run on little sleep and can tap into our energy stores to get things done.  We could laugh and joke.  Cry and sit silent.  We could do it together and none of us would feel alone.



However the sleep factor was becoming an issue.  We tried to sleep in the room with pillows propped up here and there and it didn't work.  Kevin suggested we go have a nap at the ICU fold out chair things for a little bit and we would change out with Kathy.  We slept for an hour or so.  In that time something caused Kevin to jump up and he scared me and I looked at him completely confused and I said I thought you were your dad!!  He changed out with Kathy and she came in and slept for a bit. We both woke up at 7 ish and headed back to the dungeon.  While we were gone Kevin said he almost came for us because he was lonely.  He opened the blinds as morning broke and took a picture of the most beautiful sunrise.  He told his Dad it is okay to go to the light.



There we were gathered around and no changes had occurred.  We were surprised he made it through the night.  Grant had called and asked if we wanted anything.  Yes.  Coffee.  Coke. Kneaders breakfast.  Patty was on her way too.  We knew the whole gang would be with us soon.  Gina the nurse from the night before stopped by to see how things were going which we thought was nice and thoughtful.  The hospitalist came and talked to us about hospice care and got that going for us for the social worker to come in and talk to us.  One of the co-workers of the surgeon came in and talked with us too offering his condolences.  We felt he was coming by as a cover your ass sort of thing given the last medical thing he had was from surgery from his co-worker.



A lot of funny things happened, maybe not as funny if you were a very serious person, but funny if you are sleep deprived and completely delirious.



One is that while Kathy, Kevin and I were in the ICU I was checking Jack's pulse, a thing I would become obsessive over and I was talking to them and it was something somber and serious.  Kathy was sitting on the bed with her legs the same direction as Jack and she was sitting closer up by his head so her legs were in line with his arms.  I was on one side of the bed and she was on the other and Kevin was by his head.  For no reason at all she stretched out her leg and it looked like from my perspective he raised his arm or he grew a leg that lifted up.  Scared the crap out of me and we laughed and laughed and laughed.



Next.  Kevin came back from the bathroom and told me, "there was an incident in the bathroom".  For details I will keep private, he peed a little on himself and his shorts.  He washed them in the sink and given he was wearing quick dry material shorts they dried quickly.  Good thing I had him change his shorts, because had they been his khaki shorts they would have been an issue.



Next.  We were all gathered around Jack and we had a pretty large crowd there.  Zach, Patty, Kevin, Kathy, Jack and I that I can remember.  I think maybe Stacey and her Kevin were there.  Anyways, Zach gets a call from Grant.  This is what we hear:



"Hey Dad. What? You got a cramp? Your junk fell out? You did what? Pissed on yourself? What? You took them off in the parking lot? You aren't wearing any shorts?"



Yep.  Grant got a cramp trying to go to the toilet and peed all over himself.  We made jokes endlessly after that.



We had the case worker come in and she said she was going to get with the hospice folks and let them know we wanted to go to Hoppi's House which is a really nice place to go. To die.  They told us the representative from there would be back to talk to us around 1-2pm.  Great.  That could give us some time to go home shower and change and get a night time bag and get back.



Before we left, Kevin and I went for a walk to clear our minds and came back to get Kathy to walk too.  Being in a controlled air room watching a loved one die is so exhausting and we needed some air and room to breath.



Kevin and I left and we were completely delirious.  Nothing made sense.  We felt like we were in another dimension.  It didn't make any sense at all.  I hardly remember the 45 min drive home. We got home, showered, threw a bag together and left again.  We went to Chipotle for some food on the way back.  We stepped out of the place and had no idea whatsoever where we were or the car.



We made it back to the hospital for the Hospice lady to talk to us.  We came back to the dungeon full of people.  It was so overwhelming.  Sean, Araby, Bhodi, Rhyker, Stacey, Kevin, Grant, Kathy, Patty, Jack followed soon by Patty's 4 grandchildren and great-grand daughter.  I was honestly petrified Jack would pass with all of these people and not be able to pass peacefully.  Soon Vern and Barb were there too.



Eventually the Hospice representative came to talk to us about the place and the paperwork.  This was such a hard time and so many people were in there.  Kathy had the devastating time of having to sign the paperwork and they would arrange for transport of Jack to the Hoppi House.  We moved all the stuff from the room to the cars and moved cars closer together so we could follow the transport in Jack's car and our car.  It was so weird moving everything again to the place he would take his last breath.  We knew that moving him there was the best and right thing to do for his comfort but it was also so hard because we knew this is the place he would make his journey to eternal life in Heaven.



The time came for transport.  My over protective self wanted to help transfer him from the bed to the gurney.  Of course they don't know I move humans for a living, so they made me back up.  They said that he wouldn't be on oxygen and moved him.  The part of me that wants to save him said, he needs oxygen and is painfully followed by, I can't save him.  I can't.  The extent of the stroke is too much.  I had to repeat this multiple times to get it to stick.



We followed the transport to the Peppi House.  We got there and so did the huge crowd.  We had Stacey, Kevin, Grant, Kathy, Patty, Patty's grandchildren and great grand-child, us and Jack.



We had some paperwork to fill out, which was simple paperwork but it was too much for Kevin and Kathy to handle.  Kevin was able to write KAT and couldn't finish her name.  I took over the paperwork which was a sheet called "About Me".  Jack's favorite sports, favorite positions to sleep, favorite food etc.  It was exhausting to fill out ONE page of information with about 10 questions.  But, the dynamic trio did it.



We were escorted to his room.  1005.  The room was lovely.  It was set up in a way to make you feel you are at home.  The staff is the most compassionate humans I have ever encountered in my entire life.  Amazing.  Our nurse even changed out his lanyard for Cubs after reading his "about me" sheet.  Every person who was with Jack talked about his favorites.  They always talked to him like they knew him.  So endearing and loving.  He had a hand made quilt on his bed. He had a patio.  He had a lot of natural light and not the harsh glare of fluorescents. It was calming.  They had a couch that made into a bed.  Chairs that made into a bed.  An endless supply of coffee and snacks.  Home.



Something to note.  Jack under no circumstances wanted to go home to die.  He didn't want to be in anyone's home to die.  This was the closest thing to home and comfort.



Eventually everyone filed out and the subject of dinner came up.  We had had enough Cane's and Kneaders to sink a ship.  We decided it started to sound like a law firm.  The amazing part of this place, they happened to have a green book full of menus.  We selected a place and placed our orders and Grant and Zach went to get it.  Here or maybe sooner is when the Mexican themed food began.



We had at this point, Patty, Grant, Kathy, Zach, Hugh, Lindsay, Kyla, Anson, Stacey, Brian and Jack.



They had a nice family lounge area with a table, fridge and seating area.  It was really nice and accommodating to our group.  We all ate and had Johnny her grandson take Patty home.  Patty was really struggling and not eating and we were so worried about her.  She was persistent with having Jack at her house and it was hard for her to understand this was Jack's wishes and his families wishes.  We also had her grandchildren, Johnny and Richard on board to help with keeping track of her and driving her.



The end of the night came and it was the dynamic trio.  Kevin, Kathy and I.  Here we are again watching Jack die.  I have been on high alert now since Friday morning, it is now Saturday night.  We settle in our chair-beds and couch bed around 11pm or so.  The staff insisted on making the bed for us.  They are so kind.  We had Kathy lined up next to Jack, then me and then Kevin on the couch-bed.  It was longer and thought he would be the most comfortable.  We settled in with idea to take shifts and we all just conked out.  I lied there listening to Kathy snore, Kevin snore and Jack snore.  I chuckled with like father like son and daughter and wondered who was the loudest.  But I also was thankful they were getting sleep.  I couldn't sleep though.  I couldn't shake that we were waiting for him to die.  It was so heartbreaking.



The night nurse came in at 1 am to check on him.  Check his increasing body temperature.  His decreasing lungs and powerful heart rate which was increasing more and more.  She was so gentle.  She spoke softly to him. She sighed softly at the signs of the end coming.  I was watching an Angel.  I climbed out of my chair-bed to talk with her and thank her.  After she placed the ice bags on him again and gave him more meds to comfort him, it was just us.  Jack and me.



I cried.  Deeply from the depths of your belly that you laugh, I cried.  I cried as silently as I could because Kathy and Kevin needed sleep.  I cried from the loss.  I cried for my inability to save him.  I cried for memories I have.  For Cecilia.  For every single person who came to see him.  For every person who loved him, who knew him.  I cried for the love I have for him.  The role model he is.  The father he is.  The husband he was who cared so deeply for Jackie when Alzheimer's took her mind.  He painted her nails.  He made her meals. He changed her.  He dressed her.  He bathed her.  He took care of her.  He emulated love a husband has for his wife.  It was what movies are made of.  Why romantics write.  And he is leaving this world for the eternal love with his wife.  It made me question everything in life.  Why a thousand times over.  Why can't we live forever.  I thought of if Heaven is real, is he with Ben?  Are they playing dinos on the floor.  I never got to thank him for what he has done for Kevin and what a wonderful father he is.  I was full of regrets of conversations not had.  I was encompassed in sadness for Kathy.  Losing her mom was crippling and this is unimaginable.  I stared at her and wished and prayed for no pain on her.  I couldn't hold back the sobs watching Kevin and knowing that all of this has erupted emotions and memories of Ben's last days and watching his idol die.  I can't take this pain away.  It is nothing I can fix or make better.  It makes me feel helpless and inadequate because I can't.  I love this family so much and it is killing me to see their pain.  I am a sponge and I soak it up.  I soak up love. Pain. Sorry. Happiness. Sadness.



I sat there at his bedside for I have no idea how long and climbed into my chair-bed and cried myself to sleep.  I remember waking at some point seeing Kevin grab the fruit loops and thinking he had a handful and went to bed.  He woke up at 5 and had some for breakfast, but to me it seemed the middle of the night.  I decided to get out of bed seeing that Kevin was gone and went to the family lounge to find Patty and Kevin.  It was around 630-7 am on Sunday.  Patty woke at 4 and showered and drove to the place.  She left Johnny a note so he knew she was safe. 



We let Kathy sleep longer and she joined us and the day began again. Coffee and coke on board we made a call to Grant for breakfast burritos.  The burritos came with Grant and Zach and we all ate, Patty had half of one.  As the day progressed, visitors came and went.  Thoughts and condolences and moments shared.  He was bathed and they shaved his face which was sweet.  Bob and Sandra Rohen came and visited him and we were going to go home spend time with the kids after they left.  When we left we told him it is okay if you leave while we are gone.  We love you and we are okay.



We left there and decided on a some food from Jimmy Johns.  A couple moments happened that were funny.  First, we really shouldn't have been driving.  Kevin nearly hit someone backing up after at a Walgreens to see if they had Big Hero 6 movie we have been looking for the kids.  We got the Angry Birds movie instead.  Then we went to the sandwich shop and we couldn't even make a decision on food.  We finally did and Kevin said no lettuce or tomato.  They gave us our sandwiches and the guy says, "Sir, I am so sorry."  Kevin thought, did she tell them my father is dying?  The kid says, "there is lettuce on your sandwich, I will remove it."  He sounded like a person who says sorry for your loss.



We got home and got the kids and we decided to "watch" the movie and I made some snacks for dinner, some pizza things and we sat and watched the movie and let time pass by.  It is a weird thing.  When we were home we wanted just be there at Peppi's House then at Peppi's House we wanted to be home with the kids.  It was just so strange.  We sent the boys off and headed out again.  Another night of waiting for death to come so Jack didn't need to struggle anymore.



We went to the grocery store previously and bought things to settle in for the long haul with snacks Patty would eat and would sustain us vs eating take out again.  We came 'home' to see that a ton of food was brought by a 4-H group from friends of Kathy and Grant.  So much food.  Added to our settle for the long haul.  We had some pie which we thought was apple.  The next day Grant had it and said it was peach?  Apparently it was half apple and half peach.  We arranged our chair-beds and couch-beds.  We chatted.  Dealt with e-mails and affairs and held onto Jack's hands.  Monitoring urine output.  Heart rate.  Respiration rate.  Waiting and not wanting, but needing him to not hang on any more.



Kevin and I talked about earlier if we all took a walk so he could die in peace.  We didn't but we talked about it.  Earlier in the day Patty had sometime alone with Jack to talk to him and say her goodbyes.  She needed to reach a level of acceptance to say goodbye.



Jack had a moment with Kathy, Kevin and Ken before the surgery where he told them he had a good life and he loved them and if something were to happen, it is okay.  That helped some with the blow of having what happened happen.  Ken left right after surgery knowing he was going to be okay, I am glad he was able to hear this conversation with his dad to help bring him peace.



We brought Speedy back hoping it was that that he needed to let go.  We thought Lindsay coming is what he needed.  We thought prayers from the preacher was it.  We thought a thousand things thinking this is what he needed to let go.  Kevin shaved his face, he hadn't shaved since Sunday of the week prior.



I told him before bed that I got it.  I will take care of Kevin and Kathy and they will be okay.  I will make sure of it.  Each time we left him we didn't say see you soon, we said we love you and if you need to go while we are gone, it is okay.



We settled in our line-up.  It was around 1030-1100.  Kathy positioned herself with her hand on Jack's chest.  I laid listening to the clock tick and Kevin on his side.  We all fell asleep at some point.  Jack's breathing had settled into a calm rhythm.  His urine output was low.  His heart rate seemed it was getting more erratic.  His body temp was all over the place. But, it had been this way for awhile.  Not a real indicator.



Somewhere around 1230 ish, Kathy shifted position and felt he wasn't breathing anymore.  She woke me with rubbing my arm and I rolled over and woke Kevin then got the nurse.  The nurse came in and listened to his heart as we all hung onto one another and she listened to his heart beat.  It faded away as we were there and the great man, died.  It was a moment of relief that he was no longer laboring to live these last horrible 72 hours anymore.  At 1248, August 22, 2016, our beloved Jack, father, husband, mentor, love... died.   It was a moment of what is our next step.



This journey is about steps.



Step 1.  Admit to hospital.  Step 2.  Surgery  Step 3. Recovery Step 4. Not doing well  Step 5. Tests  Step 6. Results Step 7. Shock  Step 8-10 move rooms Step 11. Hospice Step 12. Death



It is like a 12 step program.  Now was the step of the mortuary to be called to get Jack.  They came to get him a few hours later.  In that time, slap happy drunk delirious dynamic trio was in action.


Kevin put on his Dad’s hat which made him look like a young man.  It made me so sad to see him with the hat on and feeling the great loss.  He claimed that hat as his own; it was his connection to his father.



When there is a death at work, people open the door so the soul can leave.  I said, I should open the door.  Kevin said I could leave the door open.  I said I didn't want Jack to get eaten up by mosquitoes.  Oh.



The nurse came in with the paperwork for the mortuary and we all thought she said, “here is the release form for Heaven”.  She said “Heather”.  We thought all you need is a letter, hmm.



The three of us were standing there and I thought I heard Kathy say, “He doesn’t look dead.” I rubbed her arm and said oh honey I am sorry, he is dead.  She said, I know that.  She said, I said Dad.  Oh oops.


I found it interesting that Jack's hands were in the same position with his fingers curled under.  I went to the side of the bed and looked at his hands with his wrist cradled in my hand and Kathy walked in thinking I found a pulse.  Freaked her out!!  Got her back for the leg lifting thing!!



When Kathy talked to Lindsay earlier right after he died, Anson made a squealing/screeching sound and I didn't know what the sound was and I looked at Jack really confused.  I thought it came from him.



Kevin went to the bathroom and while he was in there I went for more coffee.  He came out and both of us were gone.  He thought I got freaked out and left.



I am sure the staff thought we were a bunch of nut cases.  The reality is, we know death.  We know loss.  We know that you can either get swallowed up in it and cry uncontrollably or you can find light and laughter where you can.  The three of us were operating on mission, adrenaline and numb shock.



Next step, we packed up all our things and went home to Jack's house.  It was so surreal coming into the house with all our stuff without him or waiting to see what room he was in.  It didn't seem logical to be in the house at 430 am as people were getting ready to leave for work or who were sleeping and their lives were untouched by death, sadness, loss, grief.



We put all the food away.  We ate a snack and considered just staying up.  We decided to go to sleep as that was the logical next step.  Kevin and I slept until around 9, which seemed late.  We woke confused and unsure of where we were and what was going on.



The week ahead was full of what do we do next and how do we move forward.  It is a blur of a week.  Planning, organizing.  Signing paperwork for cremation, for death certificates.  Phone calls for notifications.  Emails.  Obituaries.  Financial organization.  Finding things tucked away that make us laugh, make us cry.



Through this whole week one thing has remained the same.  Love.  Love for my family and helping them through this time of their lives that shouldn't have to happen.  Safe place.  As soon as I get home I don't have to be strong anymore and I can cry.  It is like a faucet is turned on and I can't stop crying.  Food.  I think I gained 5 pounds.



Sadness too has remained.  I am sad each day.  It doesn't go away.  In this process it has helped me to understand Kevin more and his grief.  I haven't experienced a loss of this level before and how to help those around me.  I am a fixer and a doer.  This has completely thrown my world upside down.  I know that each day it will change and get easier.



I will end this with what I know about grief.  It is ugly, perplexing, funny, sad, upsetting, anger filled and ever changing.  I could list a list of things I hate and it pales in comparison to grief.  The ordeal has brought Kevin, Kathy and I closer together.  There isn't a thing I wouldn't do for them.  The one thing I wish I could do, I couldn't.  I couldn't bring Ben back or make Jack better.  I am not really okay with that, but I accept there are things you can control and things you cannot.  I will support and do everything I can to help them through this.  I will make lists and complete lists.  I will write.  I will make some of the most inappropriate jokes to cover for my own insecurities if it makes them smile.  I will hold them tightly and I will cry.  I will allow myself to grieve not just for Jack, but for them.



In two days we will have his Celebration of Life.  A wonderful party.  Personally, I will celebrate John R. Trapp everyday.  I love you Jack.  May you keep us smiling and having great fun with Ben and making Heavenly Memories with Jackie.