One Day at a Time

I have been putting off posting for a couple of reasons...first, what follows is pretty traumatic for us, and second, I am not sure I can find the right words.  And besides that, it may well be the longest post in history.  Here goes...

Thursday 7:30 am
We got up to got to SLC for the surgery.  As we were heading out the door, my dad offered a blessing to Trent.  He of course accepted gratefully.  He was pretty 'iffy' that morning and needed all the strength and reassurance he could get.  Once we got to the Hunstman they rushed us right in to pre-op.  Apparently they had been waiting for us.  The anesthesiologists came in and discussed sedation for the surgery.  At first we were thinking a MAC (monitored anesthesia care) was the best option.  It is more like a heavy local anesthesia.  After seeing how big of a hematoma Dr. Carr would be working on and noting that Trent has difficulty breathing while laying flat, they decided that a general anesthesia was the better choice.  Dr. Carr came in and went over the details of the surgery and marked Trent's chest.

9:30 am

We said our goodbyes and I went to the dreaded waiting room.  About forty minutes later I saw Dr. Carr walk very quickly through the waiting room headed towards the OR, staring at his text pager.  At that point I thought, "I sure hope nothing is wrong."

12:30 pm
Dr. Carr and a woman that I assumed correctly was a social worker, came out and gestured for me to meet them in the consult room.  I knew that wasn't good if he brought along back up.  Angelique, another social worker, came bursting through the door and said she had run all the way over when she heard about Trent.  When I sat down Dr. Carr said, "Wow, so, uh things didn't go exactly as planned. Trent actually coded on the table before we could do the surgery."  He went on to explain that he thought that Trent had such low blood volume that his heart was not able to really pump anything.  When he was given the sedation for the surgery it was more than his heart could handle and it stopped beating.  He was given CPR and resuscitated less than five minutes later.  Trent was in the SICU, intubated, and heavily sedated.  He would be getting a full body scan later in the day to figure out if there was an obvious reason why he coded.

1:00 pm

I was instructed by Angelique to make sure I drank a lot of water and had something to eat.  I guess the stress of such an event makes them worry about the family.  Angelique walked with me up to the SICU and I was allowed to see Trent and talk to him.  I wasn't sure what to say except, "I'm here."  His hands were tied to the bed so he wouldn't pull out his breathing tube and he had tubes and IVs everywhere.  I was surprised how lonely it felt to have such a huge thing happening and not be able to talk to Trent.  Up to this point I had only let a few tears slip.  After a while I was left alone with Trent.  I sat at his bedside and held his limp hand and sobbed.  I prayed so much and so fervently.  I was begging for guidance and peace.  I don't really know how long I stayed there.  After a while I was given a yogurt and told to drink some water with it.  I needed it, I was pretty shaky.  Every time I stood I had to give myself a minute to make sure that my legs were going to support me.

Sometime that afternoon the anesthesiologist who performed CPR on Trent came by to tell me more of what happened.  He said that when they got to the OR they tried to get Trent on the table and he had a very difficult time making the move.  They laid him flat and he immediately began gasping for air.  They sat him up and put him on oxygen for several minutes.  Then they gave him the sedation medication and shortly afterward, his heart rate began to drop steadily.  When it reached 30 beats per minute he felt for a pulse and did not find one.  He began chest compressions and continued for about four minutes.  He gave Trent a shot of Epinephrine and checked for a pulse which he found.  He immediately looked down Trent's throat at his heart and found it to be surrounded by a soft tissue which he described as metastatic disease.  He didn't feel that he would have done anything differently and there were no mistakes made.

3:00 pm
Trent was taken for the ct scan and returned about 45 minutes later, still unresponsive.

4:30 pm
Dr. Gouw and Katie came to see me and discuss what the scan showed.  The tumors in the lung looked to be slightly larger than before and there are tumors on each side of the heart in between the atrium.  The hematomas were more fibrous in Dr. Gouw's opinion and may be more involved than we thought.  They were very empathetic and laid out the prognosis.  Trent likely has weeks to months to live.  If the chemo drugs work, it might extend a few months but would certainly not be a year.  However, Dr. Gouw was hesitant to say that because he told us that in January too.  He said he has a hard time guessing about Trent because Trent bucks the trend every time.  He didn't think continuing the new chemo was a bad idea but also wanted to set Trent up with Hospice.  Yuck.  That word tastes bad in my mouth.  Katie asked me to think of Hospice as more complete care at home and not being sent home to die.  Dr. Gouw also said that he may have contributed somewhat to Trent's "dryness" in his veins by giving him Lasix.  What we thought was fluid on his belly actually turned out not to be.

Dr. Carr came in and explained that because Trent is such a big guy, the weight of the fluid in the left chest cavity has basically flipped the diaphragm inside out and it is sinking into his abdomen, therefore displacing all of Trent's organs and making him look like he is retaining fluid.  He gave me a similar rundown of the scans that Dr. Gouw did and gave the same prognosis.  He said that because of what happened in the OR, there is not an anesthesiologist anywhere that would touch Trent with a ten foot pole, so future surgeries are not an option.  He stressed that it would be important to make sure that the remainder of Trent's days were as good as they could be.  He then just sat and listened to me.  I cried a bunch and told him we were grateful for all he had done for Trent.  He held my hand and told me how sorry he was that things didn't turn out differently.  He has a special place in his heart for Trent.

7:00 pm
I stepped out to call family.  I had tried to send texts earlier in the day but the service was bad and they didn't send until much later.  I had the unfortunate job of telling Trent's parents the awful news.  When I went back to Trent's room I was met outside by a nurse asking if I was Holly.  Trent had woken up a few minutes earlier and had been writing my name on a piece of paper.  I grabbed his hand and  kissed his face.  He had this look in his eyes like a frightened child.  He had no idea what had happened and why he was tied to his bed not being able to speak.  I tried to explain in basic terms what happened.  I told him that he had died on the operating table and was brought back.  I asked him if he chose to come back and he nodded his head yes.  He pointed his finger as if to say, "There's more."  He doesn't remember that at all though.  He kept gesturing with his hands over and over like, "What is going on?"  I quickly realized that everything I was saying to him he immediately forgot.  He must have written the question, "What happened?" about 50 times over the next few hours.  He filled up 12 sheets of paper doing that.  Intermittently he would write, "I love you."  I saved four pages of his writing and the nurse threw away the others.

One nurse was doing the normal examination, squeeze my hand, push against my fingers with your toes, etc.  When she asked him to squeeze her hand he squeezed and wouldn't let go until she said please.  Then she asked him to push against her hands with his feet.  He did so and trapped her hands between his feet and the bed.  Even while he was not completely lucid he was teasing.  I have such sympathy for his little brothers! :)

10:30 pm
I sat down and pulled out the iPad to read the scriptures to find some peace.  I guess I was hoping for a similar experience to the one I had in church a few weeks ago.  I was flipping through chapters in the Doctrine and Covenants.  I noticed that I kept coming across the phrase, "and lo, I come quickly."  Somehow that made me feel better.  No matter what happens, this life is a blip on the radar and soon enough Christ will return to the earth to relieve us all of our suffering.

I had just laid down for the night when a nurse asked if I had eaten anything for dinner.  I hadn't and didn't think I needed it.  John, the CNA immediately left the room and came back with a turkey sandwich and a sprite.  He gently but firmly said, "Get up, you are going to eat this."  I didn't have the energy to argue so I did what I was told.  He sat down beside me and took my hand in his.  I immediately started to sob.  He pulled me into his arms and stroked my hair while I cried.  I told him I was worried about my kids and how I was going to tell them.  He asked if I was LDS and offered to give me a blessing.  I jumped at that chance.  Within a few minutes he was back with two other male nurses to give me a blessing of strength to endure the trials in the days ahead and to find the words to help my children.

Friday, 12:00 am
Trent was still wanting to write the same question every couple of minutes.  I was exhausted and just wanted some rest.  The nurses kept telling Trent to leave me alone and go to sleep.  He would tap repeatedly on his bed and snap his fingers at me until I came to his bedside to watch him write his question.  I was sobbing by this point, I had answered this question a million times before but he would immediately forget.  I was begging him to stop, I couldn't keep saying it.  When I looked in his eyes I knew he knew I was upset but it was like it didn't really register.  Just when I thought he was going to stop, I would hear the tapping on the bed again.  I tried to ignore him but I knew that in that very small moment he was aware of what he needed and that I wasn't there to answer him.  I couldn't bear to have him think I was abandoning him so I would get up and go through the same thing over and over.   The nurse ordered a pair of earplugs for me and sent me to bed.

4:30 am

I heard Trent calling my name in a gaspy, strained voice.  I jumped up and ran to his bed.  The nurse got there just as I did and swore then slammed the CODE button.  Trent had pulled or tongued his breathing tube out.  The room was immediately filled with nurses and doctors.  They put the oxygen mask on Trent and got him breathing.  They untied his hands but he kept pulling the mask off so they finally just put a cannula in his nose.  Then the questions began.  Now instead of writing, "What happened?", he asked me over and over.  I sat and held his hand and tried to give him only the information he really needed.

5:30 am
John came in and was helping Trent.  He could see how agitated he was and asked if he would like a blessing.  Trent said yes and within a couple of minutes he was anointed and given a blessing of comfort.

7:00 am
Trent was frustrated and wanted to go home.  Because he had extubated himself there really wasn't a reason to keep him there.  Preparations were being made for Hospice and it was suggested that he should be taken home in an ambulance.  I decided to ride with him and have my brother bring our suburban home.  We had to sign a POLST, basically an advanced directive for the ride home.

10:00 am

Angelique and Trent

Getting ready for the big ride.

Trent air kissing me in the ambulance bay.

The social worker came back and asked if Trent would like a blessing before we left.  I told her that he had already received one from John earlier.   One of the nurses asked if I meant Jake.  No, it was definitely John, but nobody seemed to know who John was.  I tried to describe him but no one knew who he was.  Interesting...

Then came the string of nurses and doctors who came in to tell Trent how much they respected and honored Trent for the valiant fight he had put up.  One of our first nurses, Sarah, (she helped him with a horrible episode with gas over two years ago) came to see him.  She hugged us both and told us how much she loved Trent and expressed her regret for the situation.

Trent's port was accessed for a continuous morphine drip.  I told them we had a difficult time with it a couple of days prior but this time it worked beautifully.  The EMTs arrived with the stretcher for Trent.  He asked them if we could stop on the way home for a Blizzard from Dairy Queen.  Then he thought he might like some chicken too and asked if we could stop at Chic-Fil-A too.  Oh brother.

11:30 am
We arrived home and were met by the Hospice nurse.  Trent could not remember any of what had happened and was very surprised to learn that he was on Hospice care.  This made it a little uncomfortable for the nurse and myself as I tried to explain things for the millionth time.  We finally got him settled down and  tried to relax a little.  I laid down on the couch and closed my eyes.  I was asleep before my eyes finished closing.  I awoke a short time later and just watched Trent breathe.  He has suffered so much!  He has sacrificed everything to fight this cancer.  His body is scarred and broken and tired.  His spirit is strong and his determination to continue to fight has not wavered but I don't know if his body is up to it.

5:00 pm

I took four of our kids, (Zach was at Scout Camp), to tour the new Brigham City Temple.  My dad has had the opportunity to oversee the openhouse and dedication planning.  He was the one to give us the tour that night.  I really wanted to be in a dedicated temple with Trent and was not really expecting anything but to be impressed by the beauty of the building.  I loved having the kids there with me and found myself really missing Zach and Trent.  As we walked from room to room I was reminded how lucky I am to be sealed to Trent and our children eternally.  No matter what happens here on earth, if I live up to my covenants, my family is mine forever.  Cancer can't take that away from me.

9:00 pm
We sat the kids down and gave them the "light" version of the previous days' events.  Most of it was probably news to Trent to because he still wasn't remembering anything.  I told them that it was okay to still pray that Dad was healed but that we also needed to submit our will to Heavenly Father's and trust that we would be taken care of.

10:00 pm
Trent and I laid in bed and talked about everything under the sun.  We cried and prayed and cried some more.  Okay, I did most of the crying because Trent was still a bit out of it.  I told him that I have lived for him and loved him from the moment I first saw him in Broulim's on December 9, 1994.   He thanked me for always being by his side and being his strength.  I kept thinking about all the things he would miss, all the things I would watch our children do and not have him there beside me.  It really made me feel like I wanted to vomit.  It is devastating to think of Trent dying but I don't want him to suffer anymore.

We tried to discuss funeral plans again.  There are just a few details I wanted to be sure about.  After a while we gave up.  That will have to come later.   We slept for a few hours holding hands which is just about the only contact I can have with out hurting him.

Saturday 4:30 am
Trent was frantic to get Zach home.  He felt like his time was really short and needed to have all of our kids here.  By the looks of him, I thought he was right.  I took the opportunity to tell him everything I needed to say and then cried a bunch more.   I can't stand the thought of Jonathan not knowing how fun Trent is. All he will remember is a sick daddy.  That breaks my heart.

6:45 am

I called the wife of Zach's Scout Master so she could relay the message that Zach needed to be home ASAP.  We then called Trent's mom and dad.  After those calls were finished my dad came down.  Trent was pretty confused by now.  His vision is blurry and doubled because of the morphine.  He kept saying to my dad that there was two of him.  I jokingly said it was his evil twin.  Trent reached for my dad's face and said, "No, this is the good one."   Then my mom came down and told Trent how much they had enjoyed having our family in their home and how much she admired and respected Trent for his courage.

When Jarom woke up he came in and I told him that Dad probably didn't have much longer and if would like to tell him anything it would be good to do it now.  Trent told him how much he loved him and how proud he was of him.  Jarom couldn't really deal with all that then so he left and went to work outside.

Daddy holding his girls' hands.

Mallory, Megan, and Daddy

Mallory and Megan came in shortly after that.  I explained the situation to them.  Mallory crawled up in my lap and cried.  I asked Megan if she needed to say anything.  Megan has been void of any outward emotion the whole two years.  As soon as I asked her if she needed to say anything she burst into tears and said she didn't want us to give up yet.  She mentioned the blessings and said again that we couldn't give up.  She fell into my arms and we all sobbed.  I looked up to see Jarom come running over to the window and watch us as we cried.  I tried to explain that we weren't giving up but submitting to the will of the Lord.  If He wants Trent to live, he will live.  Mallory made it her job to make sure that everyone had tissues and we dubbed her the Tissue Queen.  I asked Megan what her favorite memories of Dad were.  She said she had lots of good memories. We talked about jumping in the suburban and driving to Texas on the spur of the moment and other fun things we have done.  I told her how smitten Trent was with her when she was born and called her his 'lil' boneca' which means doll in Portuguese.  Mallory's favoritve thing about Trent was that he was strong and would never give up.  She remembered how he played "Hide the Ring" with her when we went to Mount Rushmore.

Jonathan giving Daddy more oxygen through the incentive spirometer.

Then came Jonathan.  Sweet little Jonathan.  I took him in my arms and told him that daddy was probably going to get to live with Jesus soon and we wouldn't get to see him anymore.  Mallory was still there and she started to cry a little bit when I said that.  Jonathan said, "It's okay Mallory, he'll be back in a minute."  I asked Jonathan what his favorite memory of Daddy was.  He said sitting on his lap watching TV.  A few minutes later he walked up to Trent's side and said, "You are going to live with Heavenly Father but not for a really long time."

10:30 am

Jarom finally dared come back into our room.  He cried a few tears but was pretty quiet about it.  We all sat there on the floor and cried off and on.  Mallory was dutifully fulfilling her charge as Tissue Queen.  Jonathan turned to me and in an anxious voice said, "Mom, my tears are falling out!"

We were all wanting Zach there so badly.  I was getting updates as to where he was and how long it would be.

12:30 pm

Mallory, Megan, Jarom, Jonny, Zach, and Trent

Finally Zach arrived.  When I saw him my tears started up again.  Trent had been very anxious about having Zach with us.  I asked him if he knew what was going on and he said his leader had told him that it was bad. I explained a little bit and he started to cry.  He quickly went down to Trent's room to see him.  Trent was trying to be excited about Scout Camp and Zach's experience.  That helped us all to have a distraction for a minute.

We pulled out the scriptures and read a few different verses, trying to explain to the kids that even though Trent has been blessed to live, that doesn't always happen.  We still have to have faith and be accepting of the Lord's will.  We decided to have a family prayer and tell the Lord exactly how we felt.  Just then my dad popped his head around the corner and knelt to join us.  I said the prayer and told Heavenly Father how much we wanted Trent to be healed and how much faith we had in the blessings that he had been given.  I also told him that we would be faithful no matter what the outcome and that we were submitting our will to His, but just to be clear...we want Trent to LIVE.  After the prayer we all felt much better.

Mom and Dad brought lunch down to us and we had a little picnic on the floor.  Trent sat up and ate his whole meal.  Then he announced that he wanted a Blizzard.  He was still craving a Blizzard but didn't remember that he had wanted one the day before!  When I told him that he laughed and decided we all needed Blizzards.

2:30 pm
The Hospice nurse came and checked him out.  All vitals signs were okay but not fabulous.  She spent quite a bit of time with me answering all my questions.  By the time she left, everyone had dispersed a little bit to their own activities.  Mallory and Jonathan spent much of the afternoon coloring on the floor in our room.  Everyone stayed close but I think they all needed just a little breathing room.

6:00 pm
Trent was being a little crazy again.  I was thinking the bolus dose of the morphine was just a little too much for Trent.  He asked me to sit down in front of him and commenced a speech, like he was speaking to hundreds of people, about the dynamics of a relationship.  He said, "You are the wife and that guy is the husband."  He talked about the dynamics of joining two families.  That was yucky to hear so I grabbed his hand and said, "I am YOUR wife and you are my husband."

Right around this time Mallory and Jonathan were needing a little help fixing the Easy Bake Oven, which I did, and sent them off to create a masterpiece.  Trent told me how nice it was of him to give the kids his Easy Bake Oven and that they should take special care of it because it was really his.  Uh, okay...Trent loves to bake but I can guarantee it has never been in an Easy Bake Oven.

6:30 pm
Trent remembered the Blizzards again, so I packed up a couple kids and my brother, Josh, and we went to Dairy Queen.  Never again will that happen.  I could have bought three months worth of ice cream and toppings with the amount of money I spent!

7:30 pm
Trent had been up in his chair trying to watch the RSL game but became too uncomfortable so he went back to bed.  We enjoyed a low key evening and the kids just kind of hung around us.  At different times three of the kids came to me and said they didn't think Dad was going to die.  They felt like he was going to live.  You cannot imagine how I grabbed onto that!  I am fully aware of the reality but to still have hope is very healing.

I gave all the boys haircuts and got the little kids bathed and ready for bed.  What a normal thing to do!   It was nice to have something that needed to be done that could take my mind off things for a while.

When I went downstairs Trent grabbed me and kissed me like a man kisses his wife.  WOW!  That hasn't happened for awhile!  He was doing pretty well.  Actually much better than in the morning.

Sunday 3:00 pm
He had only one little episode last night.  He had a little pain so we gave him a bolus dose of morphine.  That makes him a little crazy.  The hospice nurse came again today and she checked him over.  He is actually improving. That is good to hear.  We will take any little blessing we can get.

This is the trial of our lives but all we can do is take it one day at a time.