Sunday, December 28, 2014

The most wonderful time of year

The week before Christmas, and the week after transplant, was the toughest week Steven had experienced since finding out he had leukemia on September 5.  The first part of the week, he felt decent, but was fighting a low grade fever.  That, coupled with mild nausea, kept him in bed the entire day on Monday.  Tuesday, he ventured out a bit more, but stayed in bed most of the day.

Wednesday it felt as if we had experienced the worst of it, and we made our way into the halls and walked much of the day.  The fever had broke and the nausea had left and I honestly felt like we had made it over the hump, even though others warned that there were ups and downs.  In my mind, they didn't know Steven.

However, when Thursday rolled around and the fever returned, so did a multitude of other issues.  High fevers, with no determined source, lack of appetite and increasing agitation towards me, were a few of the things he was experiencing.  I could see the Steven I knew and loved just transforming in front of me.  I wasn't sure if he just felt that bad, if the meds were wreaking havoc, or both.  Either way, what I was watching was setting me on edge and I was helpless.  The doctors and nurses had told Steven what he needed to do in order to help him improve and speed up his recovery process. Drinking, walking, and sitting up instead of lying down, were on their lists and they recruited me to help them "encourage him".

However, he didn't listen to me, or them, and I knew we had problems.  For those of you that know Steven, you know he is someone who likes to take things to the "next level".  He does nothing in moderation, everything is an extreme...and here he was, not even trying.  This was not him.  In addition to the fear that his complacency had given me, I was also finding myself at the forefront of all his frustration.  He was not nice, and at times it seemed as if he was looking for a fight.  That alone wasn't fair.  What kind of wife would fight with her husband who is fighting for his life?  Yet, there he was, time and time again just baiting me and it took all my effort to bite my tongue and take what was dished out. 

I knew what I was experiencing was normal, as indicated by many conversations with other wives and caregivers in the pantry on our floor.  A constant flow of stories of loved ones who were lashing out at those who were standing by their side filled the room.  We were all in the same shoes, and although there was comfort in that, my heart was still heavy and felt very alone.


As they took Steven to have a CT scan on his chest to verify that there was nothing more going on than what met the eye, I went to the hall to take a much needed break.  I ran into Lynn, who coordinates discharges.  We had met Lynn on our first day in the Stem Cell Transplantation Unit, and I knew that she was Megan's mom.  That first day I had told her that her daughter had been a wonderful nurse and was an exceptionally caring person.

However, that day in the hall I told her about Steven, and his current physical struggles and the fear that I had. The conversation wasn't as positive as our previous ones and I don't think she was surprised.  Another patient, a young girl, that I had become familiar with, and had checked on when her family was unable to be present, had rapidly declined.  Steven and I had seen her three days before walking the floor with her boyfriend, well on her way to recovery, and the day before I had found that she had been placed on a ventilator.  The building of all of these anxieties was written all over my face, and I was exhausted, emotionally drained, and mentally beat.  The tear tracks down my make-up were just one outward sign, but the biggest sign was probably my defeated attitude.

Lynn was amazingly encouraging (just like her daughter) and told me that what Steven was physically experiencing was typical and not to be alarmed.  She had faith that he would be fine, as would the other patient.  It was towards the end of our conversation that she mentioned that I should go see Megan on the 8th floor and that she had some good news she could share.

I knew immediately.  She was expecting and I asked her mom if I was right.  She nodded that I was.

What her mother did not know was that Megan's news was another sign to me to keep the faith.  As I mentioned before, Megan was the one that had shared with me her story of praying a novena to St. Therese.  What I didn't share was that her novena was said out of her desire, and struggle, to become pregnant.  She got her rose, and she got her baby.

And, now, she was expecting another.

I went to the 8th floor and shared with her my excitement.  Whether coincidental, or not, it was a note of positivity that I needed.


I returned to Steven and over the next few days he continued to have issues that came as a result of his fever.  When told that he needed to drink more fluids because his blood pressure was too low, he told them it would be easier to hook him up to an IV.  (This was NOT Steven.)  When told to sit up so that he would be required to breathe deeper, he told them just to put him on oxygen.  (Completely NOT Steven.)  Any efforts I made to encourage him to do what the nurses had asked was met with spite and venom and I was at a loss, and the nurse would meet my eyes with understanding in her own.  She urged him to take action and told him that preventing problems, instead of treating them, would be the best.

However, Steven was eventually hooked up to both, as well as a heart monitor, which detected an abnormal heart rhythm due to the excess fluids and unbalanced levels.  The excess fluids were due to the IV fluids they administered when Steven refused to drink, and his oxygen was low, because when refusing to breathe deeply, and sit up, the fluid settled in his lungs, as well as his body.  As the troubles mounted, my anxiety and helplessness skyrocketed.


The next morning, in a complete surprise, Jammie and Jane knocked on the door.  When I saw them I immediately burst into tears.  I felt like I had been sent back-ups and that I was no longer the only one fighting this battle with, and for, Steven.

Later in the day my mom and dad showed up, ready to also take the legendary "bull by the horns".  He now had a room full of people urging him to do what he already knew he should. 

Although not immediate, it was that day that Steven's condition, and morale, started to improve and it was a visit by Lakyn, that got him up and moving.  She wrote daily goals for him on the white board in his room: 10-15 laps a day, 3 good meals and 45 ounces of water.

My mom later told me that she overheard a phone call that Lakyn made to her daddy the day after she visited him in which she told him, "God has gotten you this far, it is now time for you to do your part."

That day also held the good news that the young girl I had been keeping track of, and worrying for, had improved and been taken off the ventilator. 

It seemed as if God truly had gotten us all this far...


Days later the fever had broke and Steven's oxygen level was staying above the critical level for the majority of the day.  The doctors started talking discharge and Steven, knowing how important it was to be with the kids for Christmas, upped his ante. He walked almost two miles in an effort to prove to the doctors how ready he was to be kicked out.

While I worried that he was overdoing it, I was overjoyed to see his fighting spirit return.


Wednesday morning, Christmas Eve, Steven woke and, once again, had a low oxygen level.  He was on oxygen for over an hour, but off of it by the time the doctor made his rounds, where they found Steven up and already walking the halls.  They consented to releasing him.

I immediately disassembled the room and took load after load to the car.  I went to the duplex and put up our Christmas tree, and Christmas lights, again, because I wanted the kids to have a Christmas as close to normal as they could.

I returned to the hospital and the kids arrived around 2:00 pm to find that daddy was getting out.  They were overjoyed and Blake said it was a Christmas miracle of sorts.  When the nurse made her way in around 3:00 p.m., Steven signed the discharge papers, and she took his last set of vitals.

He had a fever.  100.5.

Blake started crying.

The nurse said she would go speak with the doctor and it was later decided that they would retake his temp at 5:00 p.m. and if all was good, he could still go.

Blake couldn't stop crying.  I explained to him that we needed what was best for daddy and that it would be fine either way. 

He still cried.

I told him that crying wasn't going to change anything and that daddy felt badly already, because he wanted, more than anything, to be with his kids.  I told him that crying didn't accomplish anything and to please stop.

He informed me that it was accomplishing something: "It let it all out."

It was then that I started crying.


Mom and Sarah picked up the kids, and Steven and I waited for the moment of truth.  As I sat there in his room with him, I honestly didn't know what to hope for.  As I had watched Steven with the kids, and his limited participation with them, I knew that he still wasn't well.  He had napped off and on in their presence and he generally soaked up every moment with them.  I prayed that God would decide what it was that would be best. 

I knew Steven was depressed without his kids, and wanted time with them, but I knew that I would be tied in knots, knowing that he still wasn't out of the woods.

At 5:00 p.m. he showed no fever and we headed towards the duplex, and the kids.


I was a bucket of nerves and couldn't hide my worry.  Deep down, I felt like we would be returning to the hospital.  I wanted my husband "home" but I wanted him healthy more. 

Although mom had cooked a great meal, Steven barely had any.  In fact, he hadn't moved from the chair that he sat down in the moment we had arrived.  When I tried to feel of his forehead, he pushed me away, stating that he hadn't even been "home" two  hours.  However, I knew that he was feverish, I could tell just by looking.

As I watched my babies in their childlike joy anticipating the arrival of Christmas, I couldn't stop crying.  I missed them so much and I actually hurt with the knowledge that I probably wouldn't be there with them on Christmas morning.  I couldn't hold them close enough as they both hugged my neck.

I told my sister that I felt we would be returning to the hospital, and that I was going to take a shower and pack our bags.  While in the shower she peeked in the bathroom to report that she had taken Steven's temperature and it was already up to 100.8.  Once reaching 101, we were required to call and be readmitted.

I got out of the shower and told the kids that there was a good possibility that we might not be there in the morning.  I softened the blow by encouraging them to open the gifts that Steven and I had got them, so that we could enjoy it with them.


As predicted, an hour after everyone had went to bed, Steven's fever reached the cutoff mark of 101.  We returned to the 5th floor and IV antibiotics were immediately started.  The kids joined us around 9 a.m. the next morning, Christmas, after finding that Santa had found them...even in St. Louis.

The hospital room seemed to close in on everyone, though, and Steven couldn't even find the energy to enjoy the best gifts of all-our kids.  Everyone had obligations the next day and had planned on departing early in the afternoon.  I left the kids to spend time with their dad while I ran back to the duplex to help everyone load everything up, and to grab some supplies for the hospital. When I returned I found that Steven had slept the entire time the kids were there. 

I knew then and there that although he had fought me tooth and nail about coming back to the hospital, and had blamed me for ruining Christmas, I was completely in the right in doing so.  Steven would never sleep through precious time with his kids unless he felt really bad.  Really, really bad.

Unfortunately that knowledge, and affirmation, didn't comfort me much as the kids left to go back home, just a little over 24 hours after they arrived.  As the darkness started settling in around 4:00 Christmas night, I could almost feel the hospital room fill with self-pity and sorrow as I sat on the couch, watched Steven sleep, and wallowed in the loneliness.  I couldn't stop crying as I watched the cars on the road below go by.  I imagined all of them filled with people having wonderful times with their families.  I then looked towards the lights of the ice skating rink in Forest Park and thought about all the joy that the skaters there would have, certain that some were fulfilling a Christmas tradition many years in the making.  The noise from the room next door was one of laughter and joy as a roomful of people enjoyed each others company.

And here I was, in a hospital room, alone with my sick, sleeping husband, who was mad that I made him return.

The pity party I was having was invite only and I was the only guest.  It was a party for the ages. The sorrow I let fill my soul was weighty.

Then, moments later, a text came through wishing me a Merry Christmas.  And another.  And another.  Some offered kind words, others offered prayers.

It was then that I made up my mind that the pity party had been cancelled.  Sure.  It would take awhile for me to tear down the dreary gray party streamers, and pick up the "woe-is-me" confetti that littered my mind, but I was determined that I would do it.

I started by thinking about all of the many blessings that I had received this Christmas.  Blessings so numerous that I couldn't even begin to try and list them.

I fell asleep determined that I would keep that lengthy list, not my list of sorrows, at the forefront of my thoughts in the days to come.


Coincidentally, or not, the next day, despite overwhelming nausea, I could tell Steven was better.  A lot better.  And today, and the day before?  Even better.

The Steven I have seen the last few days is the Steven I have loved, what seems like, my whole life.  I have seen his fight.  His determination.  His humor.  His character. 

In the last few days his fever has not returned.  His oxygen has came up, and his cell counts have too.

Today they are talking like our release may come as soon as tomorrow, and I feel peace about whatever they decide.  I believe that the Steven I see emerging again will do whatever it takes to continue to recover.


As I thought about the previous week and his resistance to me, to the nurses, and to suggestion in general, as well as my reaction towards his resistance, my thoughts were seemingly drawing the connection to our earthly will, and God's "suggestions" for us.  God has outlined many things in the Bible that He wishes for us.  He has also outlined many actions He wishes us to take, or not to take.  I thought about how often times those things He wishes us to do, are not necessarily the easiest.

However, just like the nurses that knew that the harder route would prevent future troubles, God knows that sometimes taking the more difficult path, or making the least desired decision, can sometimes save us in the end.  Save us tears.  Save us heartache.  Save us, in general. 

I know that there have been times that I haven't chose the path that God desired me to choose.  I also know that it is not God's nature to be resentful, or angry, about my faltering ways.  All that matters is that I eventually tried to pick myself up and do the right thing.  In fact, sometimes, I believe, it takes being brought down by our own decisions, actions, or lack thereof, to learn to take the advice, or suggestions, of those who know better.

Or the One who knows all.

1 comment:

Denise Tyson said...

Your words are heart wrenching while at the same time so encouraging and thought provoking. Continuing to keep your family at the top of my prayer list. There is power in prayer!