Re-Set

     Chris's niece, Samantha, posted the picture to the right on her Facebook today.   I saw it as I was sitting in the cafeteria this morning trying to process the information we were given this morning.  They brought him down at 9:00 to start dialysis and while we were there his nephroligist (Dr Cho, the new one for this week) came in and talked to us.   She was new to his case on Monday and is trying to figure out the cause of his kidney failure.   We remember her running a test on Monday that was so rare that that ICU nurses didn't even know what it was.   Apparently she was trying to rule out something, and well, the test came back positive.    As well, she took as second look at his kidney ultrasound and his kidney's are much larger than they should be.   She wants to do kidney biopsy to find out more information and possibly run some tests on his bone marrow.  We really thought that perhaps after today's dialysis we would be finding out more about when we might get back home, and hearing .  We thought we had put the most difficult part of this stay behind us, and really want to "re-start" but seem stuck in an endless loop where we keep trying to make headway but are stuck in an undertow that keeps pulling us back down. 

       After I came back from lunch the nurse came over and told us that the doctors wanted to increase his dialysis from 3 hours to 4.   They usually like to start out slowly and gradually increase it (his first session on Monday was 2 hours).   The nephrologist, Dr Cho came back to ask if we had made a decision about doing the biopsy.   He's still trying to recover from some very painful sores that have formed and been aggravated over and over from not being able to get comfortable in a bed and has thus been sitting in a chair.  He said it feels like he's sitting on thumb tacks, that certainly can't be helpful to healing.  He's exhausted and not getting hardly any rest and keeps asking to just let him go home to heal.   She pushed us to make a decision and we pushed back trying to figure out a solution to him being comfortable. 

      The afternoon brought visits from several teams again, his favorite being Bruce from PT who has been coming to wrap the swelling in his legs.   It's nice when at least one part of his body that has been in pain is getting some relief and healing.  One other positive is that one of our favorite CNA's from our stay in May, Kayla, was assigned to be his CNA today.   She was his with us right before his first tracheal stenosis surgery and then again before he finally came home.   She takes good care of both of us and makes being here a little less stressful. 

      Finally, after two weeks of asking for a solution to a comfortable bed, we finally found someone to listen and he's resting at least a bit more comfortably.   Here's to hoping that he'll be able to get a good night's rest and tomorrow we can try to "re-set". 

Dialysis

     Last night ended up being a fairly late night with his first session of dialysis going from about 9-11.   All went well and he didn't really have any complications, and was actually able to sleep through about half of it.   Both of us got a pretty good nights sleep as well.
       Morning brought another round of dialysis.   This one a little bit longer.   They are starting out gently and working up.   During his treatment this morning the nephrology doctors came in and decided to try and have them increase the time of his treatment by a 1/2 an hour and also try and remove some of the excess fluid that has built up in his body by 1/2 Liter.   Things went well until right near the end when there were problems with his blood clotting.   It set off alarms which made Chris pretty nervous, but I know I felt a lot better that the machine was capturing them instead of releasing them back into his body. 
      We talked a bit with his dialysis nurse and found out she was from Peru.   When we asked why she became a dialysis nurse she talked about how she likes it because she's able to watch the patients progress.  Most times as nurse in a hospital you only see a patient for a short time, but with her position she often gets to follow many of them long term and watch them progress.  However, after talking to her a bit more, she opened up and talked about how several of her family and friends in Peru had kidney problems and did not have access to the care they needed and passed away.   She does this in honor of them.   As much as we wanted to avoid dialysis, I'm grateful that we have access to the care that he needs to get better. 
      There was a lot of back and forth about how much longer he would be in the ICU or the hospital in general, but in the afternoon we finally found out that they were moving him to the neuro floor.  Our nurse here, Leanne, has been amazing.   She's so patient and is the doppelganger for one of my old employees/friends, Laurie Jackson.  This room sadly views the same courtyard as the ICU room in May, but it's one step closer to getting back home. 


 

Is This The Real Life

      We made the tough decision on Friday to go ahead and do the procedure to start dialysis.  Over the weekend Chris was feeling much better and stronger, better than he has in quite some time.  Last night we discussed at length what today might bring and how we might proceed.   We were so confident that because of how he was feeling, he'd finally turned a corner.   So it was demoralizing to find out that his levels went up yet again.   His Creatinine which has a normal level range of .72-1.25, was at 4.27 when we got here and is now at 11.23. 

      Although the MICU team thought that it was best to do the procedure to put in what they need to do dialysis, just like Friday it's been a long day of waiting for IR (Interventional Radiology) to do it.   For whatever reason they didn't assign him a time and just put him as an "add-on".  They said it was likely only 1-2 hours away several times.  They finally took him back about 6:00.   It was a long day, a little too reminiscent of the endless waiting the night in May before his first surgery. 

      The procedure went smoothly and he was back in his room and awake about 7:30.   He was very concerned about being under anesthesia for yet another time this year, and we talked to them quite a bit before they took him down.  They asked him if He was actually able to do the procedure mostly awake.   It was great to have him awake when he came back into the room and that it was a successful procedure with no complications. He kept talking about how cool it was to be able to see and know what they were doing for most of the procedure.   And, when he started to get a little nervous, they asked what music he wanted.  He requested Queen. 

     It's now just a bit after  9:00 and the dialysis nurse is here and has him hooked up to the two machines that will perform the dialysis.   Today's session is only two hours, and there likely will be another one tomorrow.  What was supposed to not even be an overnight stay on the 5th has now turned into a long marathon where it feels like the finish line kept getting changed.  We still aren't sure when he will return home, or how long and frequently he'll need dialysis but at least this long stay in the ICU at least has an end in sight. We had hoped to avoid dialysis, but well... here we are. 

      I'm not sure what Queen songs played during his procedure, and many of you at the mention of queen likely have some running through your head.   I looked through some to see if perhaps there were any that fit my feelings today, there were several that were close, but these lyrics were the closest.

Ooh you make me live
Whatever this world can give to me
It's you you're all I see
Ooh you make me live now honey
Ooh you make me live

Ooh you're the best friend that I ever had
I've been with you such a long time 

You're my sunshine and I want you to know
That my feelings are true
I really love you
Oh you're my best friend

You're the first one
When things turn out bad
You know I'll never be lonely
You're my only one
And I love the things
I really love the things that you do
Ooh you're my best friend

Ooh you make me live

I'm happy at home
You're my best friend
Oh you're my best friend
Ooh you make me live
You're my best friend

  

Lionhearted

    During this entire ordeal, it's shown me how lucky I am to be led to such an amazing companion.  While pondering what I could say about this remarkable man on a day where we are waiting for things to improve, I kept coming back to the term "lion-hearted".   Not sure what that actually means,I did some researching and found a few descriptions and realized that it was exactly what I wanted.  

Strong 

        He has suffered so much pain and is so strong.  He is so brave and has immense power in him to deal with the external forces against him.     
     His body is covered with scars and his soul has taken a beating.  With all of the pain and anguish he's been through, he would do anything to spare the same pain for other's that he loves.   He's had far more than his fair share of challenges.   
      While here in the hospital, if a stressful situation ever pushes him to his limit, he's quick to apologize to the nurses for being grumpy.   He's also quick to say thank-you whenever they help him.  
     A  lion is able to take it down a foe using sheer strength and fearlessness.    Chris does his best to tackle his challenges the same way.  


Protective & caring 
     Lions are extremely protective.   However, they only get engaged when the prey is too strong or big.  
     Even in the darkest moments, his greatest concern has always been for me.   He frequently tell's me how sorry he is for all of the difficulties we've been through.  He is so tender and loving and does all he can to put a smile on my face.  Some of the most unforgettable moments have been when we've been able to stand together for a hug and just enjoy a simple moment of being close.  

      With the exception of potassium, which finally came in with a lower number, his other levels are all still going the wrong direction.   However, today he is physically stronger than he has been in quite some time and we hope and pray with the fiercest of desires that tomorrows results will begin their descent.    Emma from PT came today and was really surprised when Chris said he would be willing to try walking.     For the first time since we got here on the 5th, he left the confines of his hospital room.  He may have not gone far, but feel its a sign that he's turning a corner.  Avoiding dialysis would be our biggest hope and dream.  My sister in law was prompted to share a song today, and it had several lines that perfectly fit some of my feelings today.  (Que Mormon Tabernacle Choir Version)

To dream the impossible dream

To fight the unbeatable foe

To bear with unbearable sorrow

To run where the brave dare not go

To right the unrightable wrong

To love pure and chaste from afar

To try when your arms are too weary

To reach the unreachable star

This is my quest, to follow that star,

No matter how hopeless, no matter how far

To fight for the right without question or cause

To be willing to march into hell for a heavenly cause

And I know if I'll only be true to this glorious quest

That my heart will lie peaceful and calm when I'm laid to my rest

And the world will be better for this

That one man scorned and covered with scars

Still strove with his last ounce of courage

To fight the unbeatable foe, to reach the unreachable star

   

Waiting

     Since they ended up not doing the procedure need to start dialysis yesterday, we decided to wait out the weekend.   Thanks to the help of my aunt Roxann and our friend John, I was able to leave the hospital and spend some time on the outside.   It was a beautiful fall day and nice to feel a little bit of "normal" life even, if only for the day.

      With still the complex eye problem to fix, and all the difficult ones behind us, Chris and I talked and decided that finding opportunities for me to work when they are available is in our best interest.   FMLA can always be a safety net, but with Chris unable to work, losing both our paychecks would add even more stress to an already stressful situation.   Today I was able to go and put in a full day's work.  Going to work was a great break from life in the ICU.   My employee's were so excited to see me, and I them.   I even got to meet one of my new employee's who was hired while I've been gone.   Thanks to one of my co-workers/friends, coming to help my assistant manager out with hiring plans for next week, I was able to get an amazing hug from her and her kids.  There was a lot to do today, but I can tell how hard my employee's have been working.

     Chris also had a simple day with some different people to keep him company than me.   Several movies were watched and enjoyable conversations had.  John was even able to help rub Chris's back and help alleviate some of the pain.    Even though he's trapped here, today he was able to get some great medicine for the his spirits.

     As far as an update, all the levels that they were watching went up again today slightly.  The nephrology doctors updated today while I was gone, but he said that he can't believe that Chris is doing as well as he is with the levels that he has.  I can't recall the exact term Chris said he used, but I believe it was a "medical marvel".  People typically aren't able to have the high levels he does without it causing significant complications.  One of the tests he has Chris do is to hold out his hands out facing out and pointing upwards.   He calls it "stopping the bus".  Because he can hold them out straight and without shaking and moving all over it means he is doing OK.  I'm glad I asked what he was looking for when the test was done because it's something we can do on our own to have somewhat of an idea of if things are getting worse.

    One last development today is that they decided while I was gone to institute a new dress code.  Now when visiting we have to done plastic gowns and gloves before entering and wash our hands thoroughly before leaving.  They don't think he does, but as a precaution, the gowns are there to prevent the spread of a very contagious spore born illness.  Hopefully the test results come back soon, life in a plastic gown is rather warm.

Games of Emotion

    What a day!   This morning at nursing rounds we found out that his levels were up again.   So, we figured the Kidney and ICU doctors would decide it was time to get off the fence.  It was a bit more tricky than that because of the fact that it was Friday.   He still apparently isn't to the point where they feel it's an emergency, however because it is Friday our options were complicated. 
     Option "A"  - Go ahead and take the plunge and do the things that need to be in place to do dialysis.   Essentially make a "port" (not the technical term but it's the one that I feel describes it best).  The "port" will be where they connect him and his blood to a machine to filter his blood.   It will take blood out, clean it up and then put it back. 
     Option "B" - A bit more risky, wait some more and see if things improve.  The "port" that they would be putting in would be used for at least a few weeks or months.   With it being the weekend, the people able to put in the more "permanent port" would likely not be here, and so they would have to do a more basic one and then go back in later and make it more permanent.

       We asked them to get the plans in place to do the procedure today while we decided for sure, they said that if we decided not to go ahead they could cancel them.

      After much discussion we decided to make our own plan with a mix of the two.   Get the port placed today while it was at the safest, and then wait until tomorrow's labs to see if things improved before doing the actual dialysis.   This would also allow the dialysis to be done during the day while our nephrologist was here instead of trying to do it tonight.

      Everything seemed to be going OK, there was a bit of a question of who would do the procedure.   Either interventional radiology or a vascular surgeon.   They put him on NPO (No food or drink) and then several hours later we found out that it was for not.   They weren't able to work him into either surgery schedule and instead want to try for Monday. 

       Thank-you to all of my family coming at just the right time to give a well needed hugs and  shoulders to cry on at times when difficult decisions were made and discouraging news was shared.

     So here we are... stuck again, feeling like we've been the pawns in an cruel game of emotions.  Making such a tough decision was difficult, all for nothing.   Tomorrow we just hope that we wake up with the good news we thought we might hear today.

Don't Spill the Beans

     This morning during nurses rounds they said that his creatinine levels had raised, so it sounded like dialysis was probably eminent.  Tears slipped down my cheeks as my heart sunk.   However when the nephrologist team came by they aren't quite ready to take the jump, and are still sitting on the fence.   It's a relief to know that perhaps there's still a sliver of hope that he's on the verge of starting to improve. So, here we are a week later still waiting and hoping for an easier path to emerge.  Last night we both got a pretty good night's sleep and today was relatively quiet.   Hopefully tonight will bring another good night's rest to help his kidney's heal.   

 

    As I think I may have mentioned, I was prompted to pack the Sunday before we ended up here.   Most everything I packed was to make sure that I was taken care of, such as clothing and food.   One thing I packed was a package of Jelly Belly's.   It's something that always makes me think of my best friend Leah and I thought would be nice to have as a special treat.   Little did I know that it would be a special treat for Chris as well.   After lunch and dinner today I snuck him... one.  (Don't "spill the beans" and tell the nurses or doctor's because he's on a crazy limited diet which we are making sure to follow)  I heard somewhere that you should eat food shaped like the organ you want to help.   (broccoli for your brain, artichokes for your heart).   They are shaped like a kidney...


     Today I also ventured out of the hospital for the first time since we arrived a week ago.  I met with my bosses to update them on everything and for them to update me on what they are doing to help my store out in my absence.  As I left  I asked if there was anything from "the outside" that I could bring him.   But since he's on a very limited diet, sneaking back in food wasn't an option.  We couldn't come up with anything.  However, thanks to my thoughtful bosses, I didn't return home empty handed.   When I walked back in with a bag from Fanzz his eye's lit up.  The smile on his face when he pulled out a Kansas City Chiefs hat was priceless and it helped my heart to see a little bit of joy in his life. 

      What started out as a tough day turned out OK.  My sweet aunts Gail and Roxann came in the morning and evening and helped nourish my body and soul.   Today's sunset was beautiful and hopefully a sign of better news on the horizon.   For those reading tonight before bed, please say a prayer that tomorrow will be the day that his kidney's finally decide to take a turn for the better. 

Crossroads

      Tonight we are at the crossroads of two unknown paths.  Both look tough and rugged with not much view of the view or the path beyond. The choice of which path is not ours to make, it's primarily up to one thing... his kidney's. 
     If his kidney's don't start functioning better by tomorrow, we will journey down a particularly life changing path.   Today his kidney levels rose again, his kidney function is not improving.    They are on the fence about choosing to put him on dialysis.  Dialysis will not fix the kidney failure, it will only replace the function of the kidney's and give them time to find the root of the problem.  If this is the path it could start as soon as Friday.  Depending on if they can find the reason, our hope is that it would just be temporary for a few months.
      The other path, which is the slightly smoother path is that his levels improve.   This is the typical path of kidney disease they believe he has, and once it starts to improve, it generally continues to improve, they just haven't seen it do that yet.  Once they believe his kidney's are on the mend, we then will reach another branch in the woods as we determine what to do about the problem with the carotid artery in his brain that is causing his right eye to not move.  The imaging and treatment he needs at this point is too dangerous. 

      The other day after my brother came to visit me, I texted him to say thank.   He replied and let me know that "Prayers and Hope were always headed my way".   It struck me at that moment, and has stuck with me since that he would include the word "Hope" in his message.   With all we've been through, hope is something that is quickly dwindling.  Tonight with the sound of the ventilator humming, I take solace that he' may finally get a good night's rest.   Perhaps it's an omen that better days are on the way. 

Weather the Storm

     

      Today's morning update unfortunately was not good news.   His creatinine levels took an unexpected turn in the wrong direction and are headed up again.  We met again with nephrology and they are considering putting him on dialysis.   It won't do anything to fix the problem, but will give his kidney's a little bit of a break while they figure out what to do.   After they consulted with the ICU team, they decided not to do it today, so I guess we'll find out tomorrow.  We did bring up our concern to them that the major thing prior to finding about his kidney's, is that we've been worried about is his right eye not moving and the information from the neuro-opthamologist.  Kidney's are now up high on the priority list.  We told them that in order for them to proceed they need to be able to do imaging and treatment with dye and that we don't want to fix his kidney's only to beat them up again.  So requested that they consult with that doctor and their team to see what the overall big picture is.  

       

     Specialists are great for being experts in what they do, but the frustrating thing is that they tend to look at you through a spyglass while standing right next to you.   Focused on a very particular part of the body and not seeing the whole picture.  It seem's that Chris's problem keeps getting more and more complex and involving more specialties.  Hopefully we can get a team of them working together to possibly fix the whole problem.   

      Today was a hard blow.   I thought perhaps there was a possibility of going home today, but that seem's like a day in the distant future.  He's still in a lot of pain that very little seems to help.   It also for other reason's was a particularly tough day in the ICU.  We're trying to put our head down and weather this most recent storm.   My mom had a poem I remember memorizing as a kid that perfectly fits this situation.   

 Whether the weather be cold

or whether the weather be hot,

We'll weather the weather,

whatever the weather

Whether we like it or not!

Life is a Mixture

     As far as updates, a ton more testing today but not much news.   His kidney levels have plateaued but have yet to start improving.  Because of the high/low values of his potassium and sodium they are really worried about his heart, so that was quite a bit of the testing.   There were doctors, nurses and technicians in and out of our room from about 4:30 in the morning all the way until about 5:00. 

      One of the most memorable... we met with a very intense group of doctors, the nephrology team.  They spoke very quickly in a strong foreign accent and with new unfamiliar complicated medical terms.   It was a bit much for both of our tired brains.   The basic understanding from the visit was that they still aren't sure what caused the damage to his kidney's but really know what they are doing.  They understand things far beyond our capacity and are watching his case closely and trying to get things back in balance.   When they left Chris and I looked at each other and I immediately burst out in laughter.  Not a usual response to meeting with doctors but laughing felt good I think it's both what we needed in the moment. 

      Another intense experience was that they decided to add another IV line.   This time not just a regular one but a mid-line.  It's a step up in from your typical IV, they can draw blood from it so it will save veins from the endless sticking.    It's a sterile procedure where there was a lot of precautions taken to eliminate the chance of an infection.   I'm pretty sure he's had one before, but they were likely added in the OR. 

    Today we both received a lot of support in many forms from family and friends.   Last month my heart ached when my Grandma passed away and I couldn't be there to give my Dad a hug.   So for all of those who are far away and can't make it, know that we do feel your love and prayers.   Many from my family have also been able to come to the hospital to support me.   Thank-you for everyone for everything, you are our sunshine in the crazy storm we have been through these past four years.