Everything in Balance

     Still here, in our room with a view, trying to get everything balanced back out.   The human body and all that it does is simply a miracle, what a crazy balancing act.   In addition to the creatinine to measure his kidney function, they have also been watching his potassium and sodium.   This morning's labs showed that they were both headed in the wrong direction.   To help his potassium they gave him insulin, and to counteract what that would do with his sugar they put him on a sugar IV.  It's a delicate balance involving lots of blood tests and even more medications.   Any kid would probably think that a sugar IV or shot sounds like a dream, but the sugar shot was pretty painful. 

    This morning we also had the blessing of having some service missionary couple come and provide the sacrament.
     Sitting in a hospital after a month full of intense pain really brings it into perspective the symbolism of the broken bread and the understanding that there is one who knows exactly what Chris has been going through.  While the water is meant to symbolize the blood that was shed, tears running down my cheek during that tender moment reminded me that many tears were likely also shed as well.
      So much has been done to focus on fixing Chris's broken body, that the intimate and personal sacrament provided just for us was a quiet small moment to step away from the stress and pain of a broken body and rejuvenate our souls.

"While of this broken bread Humbly we eat,

Our thoughts to thee are led In rev’rence sweet.

Bruised, broken, torn for us On Calvary’s hill—

Thy suff’ring borne for us Lives with us still."

Jesus of Nazareth, Savior and King Verse 2

     In addition to the trials, we have been blessed with many family and friends there to help balance things out and lighten our load.   Thank-you to everyone for your prayers and fasting on our behalf and for the many offers of assistance.

Blessings in Everything

     It goes without explanation that a hospital is not the most enjoyable places to spend your time.   But, being grateful sure does make a stressful situation much more bearable.  

     Today I'm grateful that real life isn't how it is on TV, where there's always visiting hours.   Thanks to my work understanding true priorities, I've been so lucky to be able to be with Chris in the hospital the entire time he's been here (both this time and all our previous stays).  This morning after spending some time on the ventilator he had a period of respiratory distress.  He went into"desat" meaning that his oxygen levels dropped into dangerous levels that set off lots of alarms.  Even with his two nurses (his main nurse has a training shadow today) and the respiratory therapist were in his room, despite changing the delivery method and level of his oxygen, he kept declining.  I sat there holding his hand, encouraging him to take deep breaths but nothing was helping.   Inspiration struck and I remembered that his trach cuff was still inflated from being on the ventilator.   The cuff makes it so air can't get around the trach, so everything that they were doing to try and increase his oxygen wasn't making it past the trach to where it needed to be.   I brought this to their attention, they released the saline in the cuff and things quickly improved.   Trach's aren't super common even here in the hospital, and his is a rare very custom one.  I'm sure they likely would have eventually figured out the problem, but being in the right place, at the right moment is something I am truly grateful for.  

       Taking time to walk around the hospital, I've learned that for me, it's best to look straight ahead.  While the clothing they have is surely a giveaway, the look of fear and trauma in the eyes of guests visiting family or friends is enough to make your heart break.  No matter what we are going through, there's many people in the hospital in much more challenging situations.  Just the signs on the door is enough to convince you that things to could be worse.  When doors are open in an ICU, without your eyes straight ahead you can see some pretty scary situations.   Today while looking straight ahead there was a cart with some snacks.   My first thought was that it was a thank-you to the hard working staff, but walking past I noticed a ticket saying it was a bereavement cart.   My heart breaks for the family who lost their loved one today.  

       We thought we might be going home today, but his kidneys are still declining.   His potassium levels are still high, but luckily stable.  If his potassium gets higher, it can cause problems with his heart.   They believe his kidney's will improve, but said they they will likely get worse until they get better.   So for now we are here waiting for them to improve.   The past month and a half has been a challenge with lots of unexplained medical issues, and trying to get to all of the appointments has been stressful for both of us.   Today I'm very grateful to be in a place where they can watch over everything and where the doctors come to you.  

One Step at a Time

      They originally thought we would come to the MICU for just a few hours, but here we are for  a second night.   It might possibly be our last night, at least for now.  Tomorrow they are expecting his home ventilator to arrive and we're hoping for some time here to get used to it before they send us

home but hopefully we'll feel comfortable with it and there won't be the need to spend another night.
      The kidney function they were worried about yesterday has been their primary concern today.  More blood tests and an ultrasound to try and figure out what the problem is, but still no answers.   With his kidney's in as much trouble as they are, the imaging that he needs is much too dangerous.  They mentioned "kidney failure" a few times today, not sure if he's in actually in kidney failure or approaching it, neither is good.  For right now it's priority number one in order to be able to move forward.  More ducks to try and get in a row, our only option is to take it one step at a time.
 

Back Again

     One of our doctor's called this morning and said that they felt it would be best for Chris to be admitted to the ICU today and that they were waiting for a room to open up and be cleaned.   I had the prompting to pack everything we might need on Sunday, so most everything was already loaded in the car.   Kinda hard to pack when you don't know how long you'll be there, but with the knowledge from last time, I'm prepared. 
       Once they called and gave us our room assignment we headed up and got here about 2:00.  Didn't have to even check in, just came straight up to the MICU (Medical ICU) in a wheelchair.   Not your typical entrance to the MICU and not a traditional patient.  Our room this time has got an amazing view of the valley.   The nurses again are our hero's, we've lucked out with both nurses so far. 
       Once he got settled in, ENT came and changed out his trach.  It wasn't a smooth process and they had to try several different ones.   The reason for the trach change is that he needs to be able to be on a ventilator in order to get a CT and/or MRI to confirm their diagnosis and to perform the procedure to fix it.  The new trach he got in August does not have a cuff.   A cuff is like an inflatable ring that surrounds the tube of the trach and makes it so that the air is forced into the trach and not around in the trachea. 
     After they changed out the trach, they immediately put him on the ventilator.  Having a machine breath for you when you are awake, alert and used to breathing on your own is probably pretty scary.  It took some time, and getting him into a chair where he could sit up for him to feel better, and things finally settled down.
     Some initial blood tests were concerning in regards to his kidney function, something they will monitor while they are here. 
      Not sure how long we will be here, but hopefully tonight he can get some rest.   The past few weeks trying to go to Doctor's appointments has been exhausting.
 

Pressure

   Shortly after his last surgery, Chris began to have horrible headaches and problems with his eye.  His right eye would not move to look to the right and was causing double vision.  (A problem with the 6th cranial nerve).   Thanks to a referral from an inspired co-worker, we've been seeing an opthamologist who did everything he could to try and help us.   Dr Wong has been one of the most amazing doctors in our journey thus far.   We've been anxiously awaiting an appointment with Dr Warner a neuro-opthamologist at the UofU that was scheduled at the end of the month.   

      Over the weekend, his right eye lost further function and would no longer look left or up and down.   Dr Wong pleaded our case and they were able move up our appointment to yesterday afternoon.   After lots of tests and questions, they are fairly certain in their diagnosis.  The carotid artery is leaking into the vein in the Cavernous Sinus area of his brain.   This area is where the 6th, 3rd and 4th cranial nerves are.  This blood is putting pressure on the nerves which is why his eye will not move.   His also has higher pressure in his eye from blood flowing into it.  There's a very small chance it could get better on it's own, but left untreated there's a very high chance that he'll lose vision in that eye. 

       There are additional tests they can do to confirm their diagnosis, such as a CT Angiogram or MRI, but the test that would give us the best confirmation is a Cerebral Angiogram.   It would be performed by a highly specialized team involving an interventional radiologist and interventional neurosurgeon.  Dr Warner is going to present his case and see if they will be willing to do the procedure.   It is one they don't want to rush into, and they want to make sure they have "all their ducks in a row".   The silver lining is that this invasive test would also be able to be combined with the treatment. 

      While they discuss with each other to determine if they could do this procedure safely, we are off to another appointment with our ENT.   There are signs that his airway is narrowing again which could further complicate the possibility of doing the procedure.

       Yesterday was a tough day, but it is a relief to finally have answers. 
   

Deflated

    The surgery at the end of August to treat the tracheal stenosis (narrowing of his airway) did not go like we expected and has been very difficult to recover from.   His airway has healed pretty well, but his lungs however have not.  He can't even do the simplest of tasks without his oxygen levels dropping into unsafe levels.  Before he was on oxygen only at night, now it's his constant companion. Having to work so hard just to be able to breath is tough on his body and he's exhausted.

      His ENT and Primary care doctor have said that they think the lower lobes of his lungs have probably collapsed.   It's a complication that apparently can happen from anesthesia.   The fact that his lungs battled pneumonia earlier this year probably made them weak and more susceptible to this complication.  We are waiting to get into yet another specialist to try and figure out a solution.

     Yet another specialist now treating Chris is an ophthalmologist.   A particularly tough cough to try and clear his lungs has lead to another complication.   It resulted in palsy (paralysis) of the 6th cranial nerve.   This makes it so that one of his eye's can't move like normal and gives him double vision as well as a debilitating unrelenting headache.   There are a few possibilities.   It could have caused a mini-stroke to the nerve, if that's the case there isn't much they can do but wait for it to heal, hopefully within 2-3 months.  He's requested a CT to try and rule out an aneurysm.  He also wants him to do another test to determine if the coughing might have caused a bleed in his pituitary gland.

      Thanks to our Primary Care Doctor and some strong antibiotics, the infection in both of his legs from being in the hospital is finally starting to heal.   Having low oxygen levels has made it extra challenging but it's nice to be least see progress somewhere.

     So like his lungs, and the poor ducky to the right we fill a bit deflated and like we are just dragging along.    With at least a dozen appointments, tests and procedures scheduled in the coming weeks, and likely more to come we'll just do our best to survive.  Having a rare brain tumor with accompanying complications from surgeries is no fun!

To Everything there is a Season

     For our season, it's a time to wait and learn patience.  Just over three months ago we were on the tail end of a very long hospital stay.   While here then, the season's changed from spring to summer (typical of unpredictable Utah weather a little bit of snow in between).   Now, here we are again at the University of Utah hospital for another surgery.   On the way here there were many signs of the change of seasons, it's still hot outside, but it's back to school time which means fall will be here shortly.  There was a traffic sign as we neared the "U" warning us... "Watch for incoming freshman".

       It's just after 1:00 in the afternoon and Chris was taken back about an hour ago.   Today's surgery is the same as the first one in May, a dilation to open up his airway. When we scheduled this one, the prime goal was to remove the trach.   Talking with the doctor today, I'm not so sure that this will happen.   If anything, they might change it for a different one.

  Compared to the past two surgeries, this time the waiting room is bustling with activity.  People constantly coming and going, phones ringing, people receiving updates, nurses walking around with stacks of binders (aka charts), even a lady with a service dog for people to pet if it will help calm their nerves.

     His first surgery in May was the complete opposite.   Late at night with no one manning the information desk, and not a soul in the waiting room but me.   A situation that in other situation would have terrified me, ended up being precisely what I needed.   Through previous trials I had been prepared me for it and given the strength and comfort to endure.   I was able to take solace in the quiet moment by writing in my journal.   When I was able to see him in recovery, and things went downhill I was able to focus completely on being with him in the moment.

     His second surgery that stay, when they added the trach, was similar.  It was on Mother's Day Sunday, and this time I surrounded by family, but we had the entire waiting room to ourselves.  Together we waited and some very tender moments followed when everyone was reunited in the SICU.

    Today I am alone, but I'm fine.   I know I could have asked someone to be with me, but today should be a simple procedure and I'm at peace.   When I was searching for the picture of the tree above, this one also came up in my search.  It fit my feelings also, we've both faced some scary things but is our faith that has given us courage.  In the event we end up in the ICU again, it's not the terrifying place it once was, the nurses and doctors there are amazing.


_______________________________________________________________________________

     Surgery today was longer than they predicted.   Got an update from Dr Smith about 3:00.   From the pictures he showed it looks like the stenosis has returned.  It didn't look as bad as in May, but it didn't look as open as the last office visit.   They had to use the balloon multiple times to stretch it.   Chris was having a tough time coming out of anesthesia and that he wanted him observed in recovery to determine if he should be taken to ICU.  

     He didn't feel it would be wise to remove his trach completely, so instead he changed it out for a different kind.   They replaced the custom one....with a tube so long that it reaches to the bottom of his trachea. with something different.   What he had before is somewhat similar to the one to the left but with a much longer tube.   The one they put in today is  like the one on the right.   It sticks into his throat and and is held in place on the inside with flanges.   While not the complete removal of the trach we were hoping for, we know it's a step in a better direction.

      About a half an hour after the update from Dr Smith, they let me go back to see him.  He had stabilized enough that they allowed me to sit with him.   He stayed stable the entire hour and a half I was there.  He was tired and in and out, but when he saw me he gave me a great big smile (he sure knows how to make a gals day).   Once they finally had a room free they moved us to a regular room on the Acute Neuro floor.  Took some time to get situated and bring in everything he needed, but he's all settled in.   He was able to eat dinner, and said his throat is super sore, but otherwise he is doing well.   Dr Smith said that cold things should help with that, I see lots of ice cream in his future.

      Overall a long day, but very grateful for all the prayers said on our behalf today.
 
     This year has by far been the most challenging "seasons" of my life, and I'm sure that Chris would agree it has also been his.   We've been tempered in the refiner's fire and it's changed both of us in many ways, but one of its purposes has been to make us stronger. Hopefully that strength won't be for more trials yet ahead, but our journey is not yet over.  


     

Light!

     We've tried hard over the past weeks to try to adjust to our new life with a trach, it's been tough on both of us.  We're both grateful for just the simple act of taking a breath, but his stay in the hospital gave us a huge mountain to climb.   It however has given us a greater appreciation for how amazing the human body is.  Man's attempt to try and create a new airway (a trach) is far inferior to the original thing.   When we were in the hospital and reached the point where he needed a trach, they told us that it was very likely going to be for life.  We didn't think at the time it would be a huge adjustment, we were wrong.  It's also likely been difficult as well because not being able to breath for so long has really worn out and weakened him.   Even basic things that a normal person takes for granted have been a challenge.


     Today however, we had another appointment with Dr. Smith today.   Something that we've both been worried about for the past week or so. Luckily the news was worth venturing out into the record 105 degree heat.   The main thing they do is a bronchosopy.  After making sure he was adequately numbed the use a bronchoscope (the device to the right)  to take a look.  It's got a moving piece and light at the end so they can get a good view inside.  The numbing Chris says is by far the worst part, it tastes horrible!  First they threaded it down inside his trach made sure everything at the end looked fine.   Then the removed the trach and looked at his airway both above and below.  Last time they only pulled it out slightly and took a look around, so having it removed felt strange.  After that they thread it up is nose and then down to look from above.  Dr. Smith was pretty happy with how well he has healed and even though there is still narrowing (stenosis) his airway is much better.  He covered the stoma (the hole) and asked Chris to try breathing.   Chris took a full deep breath.  Later he said to me "It was the best breath of air I've had in years!".   They put the trach back in and then talked about what was next.


      They want Chris to see a sleep specialist to help us... transition back to life without a trach!  
When they remove the trach (called Decannulation) they let the hole close on it's own.   Having a hole in your throat can make using a CPAP machine difficult so they want someone to help determine the best way to proceed.    Then likely sometime in the fall, he'll be admitted to the hospital.  They will treat the stenosis again and then remove the trach.  We are both cautiously optimistic and very grateful that this is next step.   Finally, light at the end of a tough and rugged tunnel.  We'll still be working with Dr Smith for some time and are praying that the stenosis doesn't return, but for now we've been given a bit of what we needed.  Hope!

     So take a moment and celebrate with us!   Take a deep long breath (or two or three...) and feel how amazing it is to fill your lungs with air.  Something you do every moment of your life, is such a gift.

   


     

What a difference 3 Weeks Makes

     Since I hadn't started updating the blog at this point three weeks ago, I thought perhaps a bit of reflection might be in order.  It's easy to look at the difficulties of life today and wonder if we'll ever adjust, but it also is worth realizing how far we've come in such a short time.  
      The picture on the left I took this afternoon,   The picture on the right I took 3 weeks ago today.  So many tubes!   The feeding tube (yellow tube in his nose) had just been placed.  All of the rest of the tubes and cords you can see are related to the ventilator; the intubation tube and the suctioning tube.   Almost every chance he got when doctors came in was asking to "take it out", being intubated was miserable!   The smaller yellow dotted cord was an addition to be able to monitor his CO2 levels.  They had been monitoring them via arterial blood throughout the week and doing blood draws, this allowed them to watch over them with a bit more regularity.
     Also three weeks ago today they had also finally arranged a CT.   His airway was so precarious with the short and small pediatric tube that they were extremely careful and took an entire team with him to the CT.   But they wanted more information to prepare for the trach, the surgery which they did on Mother's Day.



      Earlier in the week Chris had written this note.

      My heart skipped a beat when I was standing beside Chris holding his hand and I got this message.

    At one point in the ICU one of our nurses said "For someone who can't speak, you sure can say a lot with your facial expressions." You should have seen the look on Chris's face when I snuck out to let in his new visitor.   Several in my family had been by to visit and I will be forever grateful for all of them and their support for both of us. Having a few from his family, his mother, sister and brother-in-law arrived the next day just before his 2nd surgery, was a huge boost to Chris's morale.






    Looking back on all the trials of the past four years we've always tried to stay positive.   Amidst all of the setbacks and difficulties, there have been many miracles and blessings.  
       As we work to move forward, one thing that I know will be on both of our minds is just the simple act of being alive, the human body truly is a miracle.   Things could easily have turned out much differently last month, we are so grateful that we also were given the gift to be able to still stand together, side by side in this life... and for eternity.
 

   

Just needs time...

    Today on the last day of May, we both can't help but reflect back on the previous month and all that it encompassed.   Talking with John one day about how 16 days in the hospital felt like an eternity, he made the correlation that the Olympic games are 16 days long.  We may not have run a marathon, dipped in a pool, skied down a mountainside or put on a pair of ice skates but instead competed and survived one of the most physically and emotionally difficult experiences of our life.


     Today we had an appointment today with Dr Smith (his ENT) and Dr Elstad (A Pulmonologist) as well as another familiar face from the hospital, ENT resident Ian.  The stoma (opening in his throat) is healing pretty well, they did a little bit to help it along with some silver nitrate.  Eventually it will heal along all the edges, but for now it's still open and working to heal.  

     They did a bronchsocopy and looked up and down.  I'm pretty sure he would be happy to never have one of those again.  The horrible tasting numbing agent and feeling of a camera in your nose/throat is in no way pleasant, but it's likely something he'll have to endure many more times in the future.  They estimate that at the point of the stenosis, his airway is currently approximately 70-80% blocked.   That is after the initial surgery on the 9th that opened it up.  The less than 5 mm opening that it was at the time of surgery would in my guess mean that he was 95%+ closed.  I'm so grateful that we followed the prompting to go to the ER and not wait until our original appointment with Dr Smith which would have originally been a week from today.

     From being intubated multiple times and for several days, and adapting to the trach, his trachea is irritated.  Before they do anything more to repair the stenosis, his body needs time to recover.  Time receiving oxygen without working so dang hard for it.   For now focusing on learning how to breath through a hole in his throat instead of through his mouth and nose as he has for his entire life.   He's been able to speak a little, but it's exhausting and takes a lot of focus.  With the trach he can only talk while breathing out and makes me appreciate how easy I'm able to speak.

      They planned several visits with other doctors to help him recover from his stay in the hospital and want to follow up with us again in about a month.  At that point they will again access and determine what the next step will be and how to control the stenosis.  They still are unsure of why the stenosis is so different than usual but do think it was caused by his two surgeries in 2015.

  The numbness in his tongue that has messed up his sense of taste is improving and should continue to improve.   The weakness in his arms (likely from being strapped down to the bed for almost a week) will be something that we also continue to work on.  The numerous bruises and other scars are also healing.  Given all the trauma of the past few weeks, he's doing pretty well and just needs time.
     
     We like everyone do not know what the future holds, but for now we'll just enjoy it.  One day at a time!