The Reinert Saga: Part One

Let me start at the beginning.

Aaron has Crohn's disease. It had been in remission for 13 years. He was on a good amount of medication to control it and aside from the yearly colonoscopies, it really hadn't complicated his life since his diagnosis in high school. Occasional tummy upset but aside from that, he was going good.

Last year we started packing up our life in Ogden to move to Las Vegas. From start to finish, it took 4 months. We moved our bodies and a minimal amount of belongings down in May. Every month we drove back up at least once to work on things around the house trying to sell it. It was stressful. It was exhausting. Finally at the end of August, the house officially closed and we packed up the last of our belongings with the help of wonderful friends and moved into an apartment in Las Vegas.

Somewhere in there Aaron started to complain about pain in his side. A dull ache that got worse every week. He would come home from work feeling totally miserable. He was losing weight. We assumed with all the driving and packing and lifting boxes, he had pulled a muscle or something. We assumed the weight loss was from stress and the fact that I'd stopped cooking food with my morning sickness.

Once we got moved in, Aaron went to see a doctor. The general practitioner ran some tests, gave Aaron some pain killers and told him to rest and give it a couple weeks. About a week later we get a call from the doctor with the labs returned. He said,"You either have a massive infection or you might have Crohn's disease."

We scoffed. Aaron reminded the doctor that in the check up Aaron has told him about the Crohns disease. "Oh right. I do have that in my notes."

Months later we would find out how pivotal this moment had been.

Aaron's pain was getting worse. He was having night sweats and his heart rate was running fast. The general practitioner gave Aaron stronger drugs.

It had been a month and a half since moving in and Aaron STILL wasn't feeling better. He was much worse and since the beginning of the summer had lost about 25lbs.

He talked to the general practitioner again. The doctor set Aaron up with physical therapy 2 times a week and some muscle relaxers.

Aaron went to his physical therapy and they tried some electric pulse therapy, massage, and different exercises but nothing was helping. The day after Aaron's first appointment he was hurting even worse. But that's normal, we were told. It gets worse before it gets better, we were told.

But it wasn't getting better. It was getting worse.

Aaron was walking more and more hunched over from the pain. He would lay on the couch all day with an ice pack. His co-workers had started making comments. "If you have Ebola, don't come into work." "Are we paying you enough to eat?"

A spot on the front of Aaron's hip was hot to the touch. As days went by it was getting swollen and red.  For the sake of understanding, here is a medical sketch of a body.  The red part is where the area is that we will be talking about.

(Fig. A)

When the physical therapist saw him she said it could be a torn muscle. They said they didn't want to do any more work with Aaron until he got an MRI. They didn't want to cause more damage.

After months of Aaron in pain, slowly watching him deteriorate, I was extremely worried and frustrated.

He went to his general practitioner again. He took a look at what was becoming a more focused and distinct bump on Aaron's hip. "Looks like you have a bit of an abscess. Go and see a dermatologist. He'll pop it and clean it out. Probably give you a dose of antibiotics and you'll be all better."

I was so relieved.

Aaron scheduled an appointment for the very next day. November 18th at 3pm.

I went online to learn more. It is was what the doctor said it was, Aaron would be feeling better in a couple days. Which would be PERFECT. His parents were coming into town on Thursday and staying the weekend. Maybe we could plan a date for the weekend. We hadn't been able to go on a date since the move.

I continued searching the internet. Information calms me. I read some interesting stuff about the stages of a small abscess and what it looks like. I turned to Aaron,"Apparently right before it ruptures it gets a white peak on it. That's the white blood cells that are fighting the infection."

"Stop. That's so gross. I don't even want to think about it."

"But don't you want to know what to expect at the appointment tomorrow?"

"I'd rather be surprised."

"Well, if I was going to be lanced open, I would want to know about it."

"Please, stop."

We went to bed. Aaron a little worried but mostly in pain. And I went to bed excited. Ready to put these months of pain to a close and start having more fun in our new home. Ready to have my old husband back.

                ***

At about 5am, Aaron woke me up,"Hey, what did you say last night about a white peak?"

"An abscess gets a white peak before it ruptures. Why?"

"I think I have a white peak. What should I do?"

"Just lay down and hold still. It will probably be fine until your doctor's appointment. Don't move around too much."

I went back to sleep. Until I needed to pee an hour later....I was 6 months pregnant after all.

As I walked back to bed I looked at Aaron's abscess. It didn't have a white peak. It looked like a blister. A bubble of translucent skin. It was about two inches long and an inch at its thickest point.

"Aaron!"

"What?" startled by my concerned voice.

"Is that what you meant by a white peak?"

He looked down at the front of his hip.

"Wow. No! It didn't look like this an hour ago. What do we do?"

I didn't know. The internet hadn't said anything about this. I told Aaron to just lay down. The dermatologist appointment was at three. I took a photo of the area in case it burst. I wanted to show the dermatologist to make sure they understood what it looked like. I was worried if it popped, it would look better and Aaron wouldn't get the antibiotics to feel better.

What followed was a slow bizarre series of events.

Zach was awake and watching cartoons while eating some breakfast. I told Aaron to just call me when he needed me but to stay laying down.

He tried to sit up to call work to tell them he wasn't coming in today and that he had an appointment with another doctor. He should be in tomorrow or at least by Thursday. They told him,"Yeah, man. Get better. Get the help you need."

Aaron called me back in the room. When he sat up to make the call, he said he felt something but he couldn't see the abscess well enough. He said it felt like something was moving.

What had looked like a blister was slowly filling up with liquid. But it wasn't clear like a blister and it wasn't white like I had read that it would be. It was a light brown. And chunky.

I called the ER to ask advice. They told me that if the doctor thought it was an abscess, it probably was. It is burst at home, clean the area but go to the dermatology appointment at 3pm. They said we probably couldn't make it any worse or more infected and so we shouldn't worry. Sounds good to me.

I put a towel under Aaron in case it ruptured and went back to playing with Zach.

A little while later, Aaron called me back in. The blister had sprung a tiny leak. I got a package of cotton rounds and cleaned it up. The blister was deflating while it leaked. Okay. That wasn't so bad. It smelled terrible though. Putrid, really.

Aaron sat up. The blister filled back up with more fluid. It started to leak out. I cleaned it up.  The blister filled back up and fluid slowly leaked out again and the blister deflated.  I wiped it all up.  Then the blister filled back up again.

This went on for a long while. Where was all this coming from? The smell was filling up the room.

I suggested that Aaron get in the shower. Let the water run and wash it away.  He sat up on the side of the bed and immediately a gush came out of the blister onto the bed. We laid him back down and wrapped the towel around him so he wouldn't get stuff on the carpet.

I had to help him to the bathroom and into the tub. His pain had been so bad the last couple days that I had to help him step into the tub most of the time anyway.

The moment he stepped in the bathtub, a huge gush came out of the blister. The tiny hole was gone. It was just a steady steam of ooze. Then blood. So much blood pouring out of his side pooling around his feet.

"I'm calling 911!!"

"What?! No! Why?!"

"The internet said it was suppose to run clear when the abscess was drained. Not blood. I don't know what this is. I can't handle this!"

Aaron sat down in the tub. In his blood puddle. His energy completely zapped from the walk to the tub and this drama I was engaged in.

I've never called 911. I never want to need to again. They told me to apply pressure to the wound. Why didn't I think of that? I know first aid. I took a hand towel and applied it to Aaron's wound. They told me to get any drugs that Aaron takes together to show the paramedics. I went ahead and packed Aaron a day bag. He would need a change of clothes to come home in.

When the paramedics got to the house they asked what was going on. I told them briefly and led them to the tub. I said,"The blood and smell, all came from that" as Aaron removed the hand towel to show them the hole.

A large paramedic turned to his colleague,"Is that smell....?" He trailed off and looked at me. His colleague affirmed his unnamed suspicion with a brief,"Mhm."

Turning to me,"Could you go get any drugs that he takes?"

I left with the larger paramedic following me. I grabbed Aaron's giant bag of medication. His three Crohn's medications and his recent bottles of "back pain" meds. I handed it to the paramedic who had followed me and his eyes bulged.

"He takes ALL of those? How old is this guy?"

"He has Crohn's disease. Most of those are for that and the other half are for what we thought was a back problem but I don't know anymore."

He started writing down the names of the prescriptions in the bag.

I ventured a question. "Is that smell.....normal? for an abscess?"

He looked at me straight in the eyes.

"NO."

Aaron was slowly making his way out of the apartment, with his waist wrapped in a towel, to the gurney all set up. Zach was already outside checking it out and looking at the emergency vehicles. I handed Aaron the bag I packed and said,"So you can wear pants home." And they took him into the ambulance.

I walked back inside and a paramedic walked out of the bathroom that Aaron had been in. "I washed the blood and everything down the drain for you. You need to bleach the tub before you use it again. And....everything he got stuff on, the towel and wash cloth...anything. Throw it away. Just throw it away."

He left and I gave Zach his midmorning snack. 

I wasn't in any hurry to head to the hospital.  I actually had started to regret my decision.  I heard that ambulances are expensive and I didn't know if our insurance covered them.  "Great....my freak out over a little bit of blood is going to cost us a thousand dollars."

Once Zach was done eating his snack, I got him dressed and ready to go.

We had been living in this apartment and this area for 6 weeks.  I had never been to the hospital before.  I followed the directions that the paramedics had given me and found it pretty easily.  We were only about 10 minutes away.

I got inside and asked for my husband.  They told me that it would be 30 minutes before I could see him.  We waited...then they told me that I couldn't bring Zach in with me.  He had to go to a babysitter.  Arrrgggggg....this day was turning out to be such a hassle.

I called up my cousin and she said that she could take him.  Thank goodness I had her near by because I really didn't know anyone in the area that well.  I dropped him off and said that I would be back by 3pm probably at the latest.  I explained that Aaron had this weird thing on his hip that was bleeding and it was gross but once we got it figured out, I would come and pick up Zach.  Shouldn't be too long.

I FINALLY get in to see Aaron.  I apologized to Aaron for freaking out and calling 911.  He reassured me that it was probably for the best.  He couldn't figure out how I would have got him to the hospital.  It would have been hard for him in so much pain to get dressed and get in the car.  Plus with whatever was coming out of him, it would have soaked his pants anyway.  That made me feel a little better.

The paramedics put some padding on the leaking wound and Aaron had already soaked through it.  I asked a nurse if she should change it.  She told me that it wasn't that important since it was going to keep draining until the doctor fixed whatever was going on.  Before I came in, they had already drawn a lot of blood for labs and we were waiting for a CT scan.  Aaron and I just sat and talked while we waited.  Aaron told me that he hadn't eaten anything all day so he was feeling really shaky.

When they came to get Aaron for the CT scan, I went to go get something to eat.  I ate lunch and grabbed something for Aaron.  He was so skinny.  Which was all my fault, my mother had been telling me for months.  I needed to feed the man, she kept telling me.

A doctor used his badge pass to get me back into the ER and I went to Aaron's room and gave him the sandwich.  He only took a couple bites.  That's what he had been doing the passed couple months.  I would fill him up a plate and he would take two or three bites and stop.

We sat and waited for the results.  We didn't need to wait that long.

The ER doctor rushed in, "Okay, we need to get you into surgery RIGHT NOW.  We have the OR and surgeon waiting."  He looked over at the table....with the sandwich.  His eyes grew wide. "Who's is that?"

The nurse who had started getting Aaron prepped paused and looked over.

"Ummmm....mine." Aaron said sheepishly.

"I brought it for him." I added.

"Did you see this?" he turned to the nurse.  She shook her head.  "Who let that in here?"  He wheeled to leave...to hunt down whoever had let me through those doors.  The security guards, he assumed.  Right before he disappeared, he looked at me.  "GET IT OUT OF HERE!!  NOW!!!!"

I turned to the nurse, "I'm so sorry.  I didn't mean to get you in trouble."

"I'm fine but they are going to have to delay his surgery.  They might have to wait 8 hours. That's why the doctor is mad."

"Oh....so can we go home and come back later for the surgery?"

"No.  Your husband has a hole directly from his insides to the outside.  He can't go home."

"Wait....WHAT?"

"The doctor needs to tell you about it.  He'll come back."

When the doctor was done yelling at everyone about the sandwich (which in hindsight was pretty necessary since time was of the essence for Aaron), he came back into the room.

"Okay.  We looked at the CT scan and you have a massive abscess coming from your abdominal cavity out through your hip.  Do you know what a fistula is?"

FISTULA.  This was the word that I least wanted to hear.  I knew what that was.  I knew it was bad.  A relative of mine had had one and it had taken YEARS for the area to heal completely.

"It's a communication, a tube, that isn't suppose to be there.  You have two fistulas coming out from the abscess.  It's going nearly to your hip bone.  That whole area is just a massive infection.  We don't know where it started from.  It could be your intestines."

The doctor left to try and consult with the surgeon about what they were going to do know since I fed the man who was a ticking time bomb of sepsis.  I was dazed but I had to leave.  I had to leave to go get my night set up....get organized.  Call people.  Get Zach settled.  Get my cell phone charger.  Bleach the bathtub.

I got into the car and sat down.  And I sobbed.  My phone was binging and binging and binging.  Messages from Aaron's parents.  Messages from my parents.  Messages from friends at church who I had had to cancel evening plans with.  Messages from my cousin needed to know what my plans were for Zach that night.  I heard it going off and I just sat and sobbed.

A million thoughts running through my head.  And I prayed.  For the first time in the history of my trials, I didn't demand from God, "Why me?"  I remembered something that I had heard recently.  I prayed, "Heavenly Father, please let me see thy hand in this."

I stopped crying and I went home and was hit by the smell of the mess from this morning.  The smell of rotted flesh.  The smell of disease and infection.  I covered the bath tub in bleach and I scrubbed and scrubbed and scrubbed.  I took everything that had been dripped on and threw it into the dumpster. Then I gathered up some things and headed back to the hospital.

And I got there right as Aaron was being wheeled upstairs to surgery.  He had tried to call me but my phone was dead.  A mini miracle that I got there before they took him upstairs to the OR.

The surgeon had decided that it was worth the risk of Aaron choking on his vomit during surgery.  I mean, it was either that or die of something else.  There really were no good options.

Dr. Reese.  Man of very few words.  We've come to know him quite well.  He doesn't share information that he thinks will fall on deaf ears.  Everyone is kind of on a need to know basis with him.

He came in while they were prepping Aaron for the OR.  "Hello Mr. Reinert.  It looks like you have a pretty large infection.  I'm going to remove it.  I won't know how much needs to be done until we get in there.  If everything is pretty simple, we will just remove the infection and close you back up.  But if this is in your intestines, we are going to need to remove your colon and you'll have a colostomy bag.

"How will I know in the waiting room how it's going?"

"If it goes well, 15 minutes.  If I'm not out talking to you in 2 hours, not well.  Any other questions?"

I was tempted to ask Dr. Reese to give my husband a priesthood blessing but I stopped myself.  I don't know why I thought that he was LDS but I did.  We found out about a week later that I was right.

I kissed Aaron good bye and they wheeled him away.

An hour and 45 minutes.

A lot was accomplished by me in that time.  It isn't super important to this story.  Just logistics.

Oh...and my first post on Facebook.  I didn't really know what to say.  We were passed the 15 minutes...by a lot.  I only knew that we needed prayers.

But Dr. Reese worked on Aaron for an hour and forty five minutes.

I wanted to go back and see Aaron in recovery but I couldn't.  He wasn't stable.  He had lost a lot of blood. He had to get a blood transfusion and they hoped then he would be stable enough to move to a room.  He had had a lot of blood replaced during surgery. He had to have about half of his blood replaced, actually.  Aaron was still getting blood by the next day.  He had been really anemic to start with and with all the tissue that had to be removed....there was just a lot of bleeding.

I was informed that he got to keep his intestines.  No colostomy bag. They couldn't find where the connection was or where the infection had originated. Everything was pretty much mush inside of him after all the tissue they had to remove. It was hard to see.

"He has two softball sized holes in the right side of him.  He'll need to take at least a month off of work.  He might need to walk with a cane for awhile.  In a couple days he'll start physical therapy and we'll see what he can still do."

The surgeon would later explain to me that he removed all of the tissue from what he called "the hip bowl".  Basically everything in that area in orange was gone.

(Fig. B)

To get around the hip bone to get out all of the tissue, they had to make three separate openings (marked in green in Fig. C)  The one in the front was mostly Aaron made and it was by far the largest.  The one in the back was the second fistula that the ER doctor had told us about and the middle one was to make sure that all the infection higher up was removed.  But they all connected together into the hip bowl.

Fig. C

The nurses told me what room he would be moved to when he was stable.  I had to go down to the surgical recovery IUC.  Thinking back it is a little funny to me to remember that...I got lost in the hospital looking for it.  I wandered around for awhile trying to figure it out. But I know that building pretty intimately now.

I found the room and I sat and waited for about an hour.

Finally they wheeled in a very very still and quiet Aaron.  And we met the infectious disease doctor for the first time.  She asked me if Aaron's red beard was an indication of a fiery spirit.  I laughed.  "No.  He's a very mild mannered man."
"Oh.  I was hoping it was like Anne of Green Gables."
"You and I are kindred spirits!!"
After that, Aaron and I always referred to Kathleen as Anne of Green Gables...which was pretty often because we saw her every day for 6 weeks.

She told us that her job was to assume that Aaron was literally "full of ....poop" and treat him with as many antibiotics as she could to make sure that she completely killed whatever remaining infection could be in his body.  Meanwhile they were going to be testing for hundreds of potential problems.  Sepsis was the biggest fear.

Once the first of the IV antibiotics started to get pumped into him, she was gone.

Aaron had two separate IV poles.  One on either side of him.  He had 4 different IV ports in his arms.   Nurses would try and time all of the bags to be switched at the same time because they would have to devote an hour to getting it all set up and it needed to be done every few hours.  Some bags of medications could be mixed with some things but not with others in the IV tubing.  It was a complicated system.

The first night went by painfully slow.  We both slept poorly.  Aaron wasn't....all there.  Mentally.  He was so confused about what was happening and he was begging for it to stop.

 He would wake up every hour and beg for the tube to be taken out of his nose.  It was bugging him and making him gag.  We couldn't take it out.  He needed it to drain his stomach.

He hated the inflating cuffs on his legs.  He wanted them off.  I couldn't take them off.  He needed them to prevent blood clots.

He was in so much pain.  He wanted more drugs.  Luckily the surgeon was giving orders to give him whatever he needed to be comfortable.

My heart absolutely broke for Aaron.  There wasn't anything that I could do for him to help.  He was so hurt.  I remembered my naive thoughts the night before, hoping to put all Aaron's aches and pains behind us by the weekend and going to have some fun.

Sometime early in the morning, Aaron's parents arrived.  They had driven all night from California to be with us.  I went to my cousins and got Zach....who was very surprised by his first sleep over.

I scooped him up and went home to nap.  

Meanwhile at the hospital Aaron was drinking contrast for another CT scan.  They needed to try and locate the cause of the abscess.  The suspect was still Aaron's colon.  Since he has Crohn's disease,  he is more likely to form fistulas in his weakened colon.  And since he is on autoimmune suppressors, if he forms a fistula, he is more like to get a huge infection.

It turned out that the general practitioner was right on both counts.  Aaron did have Crohn's disease...and a massive infection.

We got the results on Thursday from the CT scan.

"There is no sign of a fistula or communication coming from your colon.  It is possible that whatever once caused the infection, closed itself back up.  It looks like we won't have to operate again."

We were all so relieved.  This was great news after a very horrible couple of days.  No more surgeries.

The surgeon turned to leave.

I had one more question. "When do you think he'll be discharged?  When can he go home?"

"Oh....we are no where near that stage yet."

And he was very very right. 

End of Part One