A new room in ICU

Wow.  A lot has happened since I last posted.   After the last post, Stephen’s throat began to heal but then he seemed to stay the same for several days.  He could swallow, but would often throw up what he drank.  His throat was irritated, he started coughing, and felt short of breath.  He had some water retention but it got better with meds and less fluids.

Monday morning he had been up and was really panting hard while getting back into bed.  I hooked up a spare oxygen monitor and checked his oxygen level.  It was at 75.  Everyone at the hospital did a great job of reacting quickly, getting him on oxygen, giving a breathing treatment and other supportive measures.   Doctors and Nurses had listened to his lungs multiple times a day and they were completely clear sounding so pneumonia wasn’t suspected.   Cardiology came up and did an EKG and then Radiology took him down for a CT scan with contrast.  The CT scan showed major involvement of fluid in the air sacs of his lungs.  Basically his entire right lung and over 50% of his left lung had fluid in the air sacs.   He was working so hard to breath and his oxygen levels were struggling to stay up even with oxygen support.  He was taken in for a bronchoscopy to look at his lungs and take some samples of the cells.  These were sent for testing.  The decision was made to move him to the ICU for more support.   In ICU the pulmonary doctor checked him and talked to us about his situation.  He was taking about 80 breaths per minute.  The doctor explained that he was exhausting all his physical and mental energy breathing.  He also showed me how his chest and stomach were moving opposite each other as he struggled to breathe.  He felt like we should move toward putting him on some assisted breathing.  He didn’t want to wait until it was an emergency.  We agreed and by they time they were ready to intubate him he was really getting tired.  Neither Stephen nor I expected how difficult this would be.  I’ll spare you the details but it was really rough for a few hours then.  Luckily Jeff arrived as this all began.  After Stephen’s body adjusted to the sensation of the tube in his mouth and throat, lots of medication to calm the body, and Stephen learning how to breath through a straw, things began to settle down.  It took an incredible effort on Stephen’s part to get his head wrapped around his current situation and to start fighting.  He did a great job.  For the first 12 hours or so he would cough fluids up from his lungs and would have to have assisted suction.  To begin with, it was about every 15 minutes.  Then, about every 45 minutes, and now he only needs help with coughing or suction every few hours.  He did an amazing job.  Much better than me – I ended up with a migraine and had to go sleep in his old bed in the BMT for 5 hours till I could see straight again!  Good thing Dad’s are tougher than Mom’s at some things.   The ICU has a great team of doctors and nurses.  They have had Stephen up walking twice (it takes 4 people to walk with him), they had him sit in a chair twice, and have been very helpful and supportive of any breathing problems.  The source of the Pneumonia is the real question.  Labs, cultures, and other tests have all come back negative.  There isn’t a virus, bacteria, fungus or parasite that they can blame the pneumonia on.  Given these results, the conclusion is that the pneumonia is a result of graft vs host disease.  One of the possible symptoms, (a rare one of course) is pneumonia for no-good-reason syndrome.  It is actually an inflammatory response caused by the battle with the donor cells.   It is treated with high doses of steroids.  So tonight, they started him on his first dose of steroids.    I’m writing this with my limited understanding (and lack of sleep) so if my story changes tomorrow, you’ll know why.

The BMT floor has quotes hanging  on the walls.  One has become my favorite this week.  It reads “When you think about quitting, think about why you’ve kept going this far.”  Cancer patients are endurance athletes in a sport that isn’t so fun.

Stephen has received a couple of very special Priesthood blessings in the past week.  They have really given him strength to face his current situation.  We are so thankful for your continued prayers.  I have thought about it several times today.  I’m so involved in what is going on I can hardly form a prayer longer than a few words.  I find great comfort in knowing that all of you are able to pause and pray for us.  We love you!

About Jane Griener

I am from SLC, UT. I grew up in a wonderful family in the south part of the Salt Lake valley. I have 4 sisters and 2 brothers. I married my best friend, Jeff Griener when we were 21 years old. We have 6 children. 4 boys and 2 girls. I've had many adventures in business and life. Too many to tell about in a simple 'about you' spot. My life is centered around my family and they are the most important factor in my life. I like gardening, photography, cooking, knitting, graphic design and lots of other things. I speak a little spanish. Fall is my favorite season of the year, but I think having all 4 seasons is what makes me love fall so much. Religion plays a big roll in my life. I belong to The Church of Jesus Christ of Latter-Day Saints. Striving to follow the teachings of Jesus Christ and become a better person each day is my goal. Well, that is a bit 'about me!'
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7 Responses to A new room in ICU

  1. Jane I am sitting here with my heart so heavy for Stephen and you. Tears are streaming down my face. I am reliving how I felt with Carolyn 3 years ago not knowing if she would even live with not much hope of saving her life and the Drs. and nurses doing every conceiveable thing to keep her alive. My prayers and thoughts and heart goes out to you. I KNOW how hard this is for you. I wish I knew what to say to you to bouy you up to give you comfort and solace, hope and peace. I wish I could just throw my arms around you Jane and hug you tight and take some of this emotional pain from you and help carry your burdens and give you strength. Jane I KNOW the Lord is there with you holding you up and angels are attending. Stephens room is a sacred place, it is holy ground. I mourn with your heartaches and what Stephen is having to physically go through. How choice you all are. I am so grateful for the PRIVILEGE of of knowing you, such choice choice people in the Lords eyes. All my love, hope and prayers are being sent to you now and daily. Please tell Stephen how beloved he is. How grateful we are for the honor of knowing your family.

    Nancy (Judd)

  2. Colleen Dick says:

    We Just want you to know that we are praying for your whole family. May the Lord give you all the strength that you need and comfort as well. Send love and hope, Colleen and Richard Dick

  3. God bless you all Jane! I want to say I am amazed by your strength but you just don’t surprise me anymore. I am constantly inspired you the courage you, Jeff, and Stephen have shown through all of this. (As well as your other kids) We remember you always in our prayers. Here’s hoping that someday in the not too distant future this will all be a bad memory and life will gone on just as you had always planned!

  4. Erika says:

    Thinking of you guys

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