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!

It Has Been A Week Since I Got Home!

So Michelle gave me access to update this, so I thought I would post something.

I got home a week ago today. I can tell you, that I wanted to get out of that Hospital more than anything in the world at that point. There is something to just being at home. The comforts of living! Not being interrupted for a needle poke or a blood pressure check every two hours.

I feel I have come a long ways since last Tuesday. I am a lot more mobile than I was. Able to get around is nice. Went out for a short drive yesterday. Was nice to get out. Eating is getting easier, and able to eat larger and harder foods. Basically the way the trach has closed off, you have to really concentrate on where to send the food and liquids, or it tries to go down the other tube. Which makes me cough like crazy.

I know I posted on Facebook about this, but the hardest part about this whole thing, is not having my voice. Or unable to speak.

Think about it.

I can no longer answer the phone. Any calls, my only recourse is to send them directly to my voicemail, that my bride set up telling people that I cannot speak and they need to email me or text me at the number they called. Even worse? The hospital that took my voice, still calls and wants to set up appointments and stuff, and they never leave or listen to the voice mail!

As a gamer, I love multiplayer games. I have friends all across the country, that I can no longer communicate with. Playing games is great because I love the fun, the strategy, the camaraderie, etc. And it has been taken away. I can't talk to my brothers or niece or nephews over the web any more. I loved to live stream my game play, and now I can no longer do that, as you need to be able to talk to your audience.

I can no longer call and order a pizza. Or go through a drive thru and order a frosty and fries.

Ugh.

But, here is the thing. I was told I could speak at all, and at this moment, I can do very short words. It is very exhausting, but I am working on it. As long as I can help it, I will make sure I speak again.

Even if it is just to tell my sweetheart... I love you.

Transitioning

      Today there is nothing much to report.  No doctors rounds at 6:30 or nurses rounds at 7:30 to wake us up.   Adapting to sleeping at home wasn't the smoothest transition, and Chris's entire body aches and has battle scars from his extended visit at the hospital, but one thing is for certain... it was a better nights rest than any we have had in quite some time.  Our day today was one of recovery, with a little bit of real life mixed in.

      When I was talking with someone recently, I explained how I felt that so many things in my life had prepared me for the difficulties of the past few weeks.   One such thing was my journal writing.  Those close to me know that I have written in my journal every single day since I was a young woman.   While sitting in the waiting room on the 2nd day in the hospital, waiting for the results of surgery I was at peace being alone with my thoughts and a journal to write in.   Two years ago leading up to Chris's 1st surgery, the one to remove the tumor,  I was terrified to be alone in case things went wrong.  I ended up not being alone and things were fine.   This time, I was physically alone, and things did go wrong, and I was OK.

      In hindsight there were many small blessings that night.  Because his surgery was so late in the day,  I was the only one in the waiting room and he the only one in recovery.  Because of this they allowed me to see him in recovery instead of waiting until he returned to his room.  Being able to see him and be there with him, even when things were going horribly wrong was so much better to me than sitting...waiting... wondering.   As well, nowhere at the back of my mind was worry about anyone but Chris.  No one in the waiting room that I needed to update or tell we were going to ICU. Help for me, in the form of others to help me bear the difficult load, did come later.   But at the times when it was most needed, there was another there to help me.

     Back home, it will take a while for us to re-establish our new normal.  A ton of new equipment came yesterday and today that we are learning how to use.   Simple tasks take more care and time and there are additional new tasks that are not yet routine.   I'll still update this blog as there are things to update, but for now I'll return to my personal journal writing.   Thank-you everyone so much for your concern, love and prayers.

    Speaking right now for Chris is very difficult, and I've kept my phone on silent for now, so I usually miss phone calls, but feel free to reach out and contact us by text, e-mail or Facebook.  Not being able to speak has been a difficult change, so he would actually love to still be able to communicate with others, don't hesitate to reach out to him.

   

Home... Sweet... Home!

   The title says it all, today after hours and hours of waiting for everything to be situated the planets finally aligned and we were able to leave the hospital.

     While driving home today in quiet car, I realized how much our lives have changed.   Chris should eventually be able to speak more, but for now it's exhausting.  One of our favorite things was for him to pick me up from work and catch up on each other's day talking.   Even when we used to have a long commute it was never long enough.  You would think after almost 17 years of marriage we would have run out of things to talk about but not so.  Today aside from the radio, it was quiet   We just held hands because reading lips or playing charades doesn't work when you are driving.  Yet he still found a way to let me know he loved and appreciated me simply by holding hands.

     Growing up my mom had this embroidery hanging on the wall near the washer and dryer and although I couldn't remember the words exactly, I felt that the fact that it kept popping into my head was a gentle reminder of my priorities for the next few days.  We are both exhausted and could probably sleep until next week!  

    Here's the words that evolved in my head as we drew closer to home...

 Unpacking and showering, can wait til tomorrow....

for time together is priceless, live life with no sorrow...

so quiet down mail pile, to do lists and groceries can wait...

tonight I'm snuggling with my sweetheart, who cares when we wake!

A new week, a new trach!

       Even as of yesterday they still hadn't decided when they would replace the new trach.   But this morning when the ENT team did their morning rounds they said it had been decided that they were going to do it today.   Dr Smith had rounds at Primary but he and Dr Sowder came over in the afternoon.   The replaced the trach in our room and it's amazing how simple it was.   They first cut out the sutures that were holding the previous one in place.   Then once it was loose, they removed the old and replaced the new.  They took it out once more to look around with the scope, then put it back in.   It was also nice to have the neck ties replaced, they were pretty grungy and super irritating.
      Last week they said that because this one was the same size they didn't think that it would make a difference in his ability to speak.   But Dr Smith did and although scratchy, when he instructed Chris to say "Hi" you could hear it!  It takes a lot work and he doesn't want to over do it, but what an unexpected blessing!

     Other good news, when we asked how much longer we needed to stay, they said hopefully not too much longer.   We're hopeful that we'll home later this week!

      They already have us scheduled for appointments next week and we've still got a long road ahead of us, but being able to breathe opens a world of possibilities.   I didn't take any pictures today, but feel like these stones will be our focus for a while.   Time to relax a bit and recover from the past few weeks and months.   Time to do things we enjoy that make us smile, and time to feel like we have the ability to dream and not just survive.  Better days are coming!

Day of Rest

       Today was a pretty uneventful day.    ENT came in the  morning and said that the plan is still to replace the trach on Monday or Tuesday but still have not decided when.   He asked them about the sharp pain he has started to have in his throat.   They asked him more information about it and nothing looks infected, they think it's likely just pain from the stitches that are still holding he trach in place.   The trach is also held in place by ties (a fabric collar around his neck) and aside from when they took of the shoelace style one and replaced it with a padded one in the ICU it hasn't been changed.   Being able to take it off and have it cleaned is something that they will do when they replace the trach and I imagine that will feel amazing.

      The only other thing that really happened today was we we asked if it would be possible to let him leave the room.   This afternoon, they got him situated in a wheelchair with a portable oxygen tank and then let me take him out for a ride.  I thought that PT or OT would come with us, but they let us go on our own!  

     Stayed just on the 3rd floor, but found a window where we stopped for a bit.   He said that feeling the sun felt amazing.   In his room he is on humidified oxygen, one of the things your body does when you breath through your nose and mouth is to warm and humidify the air, and so being on just regular oxygen doesn't feel very good.  Because the cold dry air felt painful, the ride lasted for about 15 minutes, but it sure was a nice break!

     Here in the hospital, day's all tend to blend together, but today did seem as closer to a "day of rest" than anything previous.   We both were able to sneak in a nap or two.   We also had the opportunity to take the sacrament in our room.  

     Compared to how he was feeling two weeks ago, miserable at home struggling for breath, to last week with a newly installed trach and the most difficult week of our lives behind us, we're hopeful for this week.  There's a lot to learn about caring for a trach, but we're glad we are doing it side by side.  

     

A Weekend of Rest

     Compared to all of the rest, today was a marvelous day of rest.  Tomorrow hopefully will also be the same.   Chris and I both enjoyed the quiet of our new room.   So many less monitors beeping throughout the night.   As well, this room has a very comfortable chair for him and the best one I've slept in yet.   Chris said he feels he got a full 7 hours, which for anyone who has ever stayed in a hospital is an amazing amount of sleep.  Instead of sleeping in the hospital bed, we were able to be close enough to hold hands for most of the night.   Even though I've spent most of my days and nights up at the hospital, being able to be so close was healing for both of our souls.



     As far as doctor's and therapy today, it was a pretty uneventful day.   Had a nice visit from Chris's parents.   His dad came down from Montana to pick up his mom and take her home tomorrow.  It was a very nice visit.  His mother and I share the same birthday and it's not very often that we are together, so getting to see each other was great.

      Also had a surprise visit from my sweet co-workers Nikki and Lisa.   They brought us yummy frosted lemonades and cookies.  I'm so used to seeing them almost every day, and they have been a huge support these past four years (while also going through their own trials) that it was wonderful to have them visit.  They, and my other employee's have been really working hard in my absence and I appreciate them so much.   I didn't think to have Chris snap a picture, but I did take one of their yummy treat.


     With today being my birthday, Chris was worried about ruining my day but it turned out pretty fantastic.  My aunt Gail and Roxann picked me up and we went for a delicious breakfast at Mimi's cafe.   My parents, Adam and Adrienne joined us.   A nice hot breakfast was delicious!  Breakfast is my most favorite meal of the day, I could eat it for every meal.  In addition to cinnamon roll french toast and delicious bacon, I even had a piece of cake for breakfast, I'm pretty sure that's a birthday first, but I shared with anyone that wanted a bite so it doesn't count right?    :)

      Then Adrienne, Gail, Roxann and I went and got a pedicure.  The leg massage felt amazing, but the massage chair, oh that hit the spot.   All of the sore places in my body were pampered and I came back feeling like a whole new person with pretty toes.   Gail said she has a hard time relaxing, but I think she liked the chair too!






     

      The sweet nail tech also added the pretty nail art as a birthday gift. Getting a pedicure isn't something I do very often, but today I've decided that it's something I want to do much more often.  With my birthday right before the start of summer, I hope to remember to do this next year!

     Finally, the greatest gift that I ever could have hoped for is my dear sweet husband to be feeling better.   He's so much better than a week ago, and I'm hoping for even better times ahead.   Even though he's been trapped with very few resources, he made the best of the situation.   He ordered a piece of cake (for me) and cheesecake (for him) that we had after dinner.   Then the most tender moment was when he asked me to stand, and then danced in place in a tender embrace and then in the very faintest whisper told me "Happy Birthday, I Love You!"  You have been through so much this week, but always made sure to ask if I was doing OK.

1 Day, 3 Rooms, 6 Nurses

  Got tucked in last night for a good night's sleep, only to be awakened at 2:00 AM.   Because of an incoming trauma and a full Surgical ICU they needed his room.   So we packed up everything and took an elevator ride to the 4th floor.  Our room in the SICU was one of the biggest, and the room they put us in was tiny and probably about half the size.  Although small, our new room did have a much better view.  So nice the outside world!



     During morning rounds the ENT's came and said the plan was still to move him to a regular room today.    They said that the customized trach had not arrived yet and we were worried that that might delay the plan for next week, but a couple hours later a special delivery was made to our room, they are here!  During the evenings rounds it was just one ENT today and she came just to make sure we got settled in and that the custom trach's did not get lost in transit from one room to another.   That too was one of my worries, so I made sure to carry them myself.  We asked if they had decided upon bedside or OR, and no decision had been made.   We asked if they planned to keep us here until the next procedure and they said no! With no complications, after likely a few days to heal, we will be released to go home.   He'll have to take things easy and heal and it will take a while to transition back to our new normal, but Hopefully next weekend we'll be back home, and that will be true freedom!


      Chris's Mom had a doctor's appointment up here at the UofU and stopped in to visit.   While she visited they came in and told us the great news, that we were finally moving him to a regular room. The move ended up cutting her visit a little short, but she's coming tomorrow to visit again.   It took a little while to get all moved and settled back in, and it feels a bit surreal to be back on the same floor that we stayed in the first night.  Almost as if the past 10 days in the ICU didn't happen.   I will forever be grateful for the amazing staff in the ICU as took a great team of them to save his life, but am so glad to have such a difficult time behind us.   Adding to the surrealism, we were welcomed back by a friendly face.  Our CNA for the afternoon was Kayla who helped us before almost two weeks ago, when we were waiting for the initial procedure.  She remembered us and has been taking good care of us.

        Being in a regular room feels like so much freedom. I no longer have to be buzzed into the unit and can come and go as I please, they removed all of the heart and breathing monitors (with the exception of the pulse oxygen monitor and humidified oxygen).  With less wires, and a little help from me, Chris can move around and stand up when he wants to stretch.

       John stopped by again on his way home from work and brought dinner and stayed for company.   When the night nurse shift change happened, they asked what our goals were for the day and we said that we were told to just relax and take it easy until the new trachs are placed.   Having goals and knowing what the plan for each day has been helpful, but after two very long weeks, just taking it easy sounds like the perfect goal.

     Time to curl up on the couch, watch the sunset and hopefully do what we planned to do last night, a good nights rest!