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!

     
   
     

Walking... Feels SO Good!

     Today was a pretty uneventful and simple day, and was quiet enjoyable.  I quiet day in the ICU is always preferred to an eventful day.  My aunt Gail came and brought me some yummy oatmeal for breakfast.   She was last here on Sunday during/after his surgery and so she can see the huge difference from last week.   He's a whole new man!
 
     The only therapy today was a bit of physical therapy.   He took two laps around the ICU which is
much farther than yesterday.  It feels so good for him to be able to move around, and he only had to stop once each lap to rest a little or cough.  It did take a lot of effort and energy and he's learning how to breath in a different way, so in the afternoon we took advantage of the quiet and both took a nap.

     Did get a visit also from my visiting teacher delivering freshly made rice krispy treats from my good friend Paula.  She apologized that one as missing, but had met a cute boy in the elevator who was here with his dad who was getting treatment for a brain tumor and she gave him one and made his day.

      Had a visit also from our good friend John who got a job in Salt Lake and moved in upstairs earlier this year.  He was a huge blessing during Chris's brain surgery two years ago, and having him at home again is surely a tender mercy as when we do eventually get home I'll have someone in house willing to do anything that we need help with.  Also had a visit from my aunt Roxann who also visited last week and is amazed at how much he has improved.
 

  Ended the evening with a visit from ENT who gave us "The Plan".  With all the progress he has made, they feel that tomorrow they can move him from ICU to a regular room.  The view from his room here is pretty dull, so hopefully his new room will have a nice view of the valley that we have enjoyed during previous visits.  I guess the deluxe accommodations in this high end room are in the amazing staff and not the view, it's totally worth the trade off.  As we walked around the ICU today it was amazing how many people I (and he) recognized who have been so involved in his care.  

     His new custom trach should arrive hopefully tomorrow, and surgery will either be on Monday at his bedside or Tuesday in surgery.   They are going to discuss with Dr Smith and my guess is that knowing how careful they have been, it will likely be Tuesday.  When we asked about a long term plan, they they want time for him to heal and that his next surgery to look at the bi-lateral masses in his trachea more closely and possibly remove more of them will probably be in 3-4 weeks.  After likely what will be 3 surgeries in 2 weeks, a break sounds fantastic.  We also asked about speaking on the new trach and it likely isn't going to be possible.  His new trach is the same size and doesn't provide any air flow and the new one likely won't either.  They said perhaps in the future after they have worked more on the initial issue they can look into another different trach as an option.   It's been frustrating for Chris not to be able to speak, but his amazingly positive attitude doesn't let him down and he's still doing his best to communicate by thumbs up, head nodding and writing things down.

All the "T's" (PT, OT, RT)

     This morning started with a visit from Doug from PT.   He was able to help walk with Chris again.  Doug was one of the people who helped get Chris safely down to the CT in Friday last week.  While he doesn't remember much of last week, he did recall the sound of Doug's voice.   Chris walked much further than he did yesterday and the stiffness in his muscles from being in bed is improving.  Before they went for a walk, his nurse Katie took is feeding tube out.  He's now free from all cords except 1 IV port, oxygen and all of the monitoring cords.  It makes moving so much easier!    

  

   

   After his walk with PT, he requested a shower cap.   We learned about these yesterday, and they are awesome!   It's a warm shower cap with shampoo and conditioner built in.  His mom gave his head a real good massage, doesn't he look content!

     I was also able to catch this memorable moment as well.  Life sure has been filled with a lot of tender mercies and was lucky to be able to capture such a moment.   There have been many such hugs from family and friends.   

      Later met with a doctor from the Rehab floor.   They are looking for a good solution for what to do with Chris until his surgery to replace the trach again.  According to ENT they want to keep in in ICU until Friday.   They are hoping that the custom ordered trach will hopefully arrive on Friday, with the plan to do surgery on Monday.  Rehab is usually only for longer term patients, but there is more assistance available on the PT floor so they are trying to figure out how to work things out with insurance.   Guess we'll see what works out.   By Friday I think they they think he will be more healed and safer in a regular room.

      

      Today was a good day for me too, seeing him feeling so much better makes my heart so full.   As well, I got the supplies and found a shower, then later went to lunch with my parents at Litza's Pizza.   I haven't been there I think since we went as a family after the Bountiful temple dedication about 22 years ago.  It was a nice refreshing break, but also nice to get back to Chris.   I'm so very grateful for all of the awesome people who are taking care of everything in my absence and those who are helping watch over me.  

     Chris met with a lady from speech therapy while I was gone.   They wanted to see if he could try speaking with the correct valve.  ENT had said this morning that they wanted to try, but that they didn't think it would work, they were right.   His current trach which I believe they said is silicone is a tight fit and doesn't have enough room to provide the air flow needed for your vocal cords to work.  The custom trach hopefully will be more secure and have more room for speaking.  

      Our final therapy session for the day was with Occupational Therapy.  They came and asked lots of questions and can help us with the resources needed to make sure that he will be safe at home.  She helped him get up and brush his teeth at the sink.  

     He's still in good spirits and tonight we had a "dinner date".   Sitting side by side it's amazing to think of everything we have been through in the past week.   

     Also the Respiratory Therapist tonight is another angel who was sent into our life at the right moment.  Carol was the RT on duty last Saturday night.   His very small tube had become so clogged that it was difficult to suction and get an airway.   She was very experienced and hunted down the needed small catheter to be able to do it manually.  Chris was very nervous and she did amazing at helping him to not be panicked by the situation.