Home » AL Amyloidosis » A Haze with Light on the Horizon

A Haze with Light on the Horizon

A haze, like I am sitting in a tea cup ride dizzily tossed amongst strange and familiar faces. I feel like the hospital is a brain vacuum, my brain is being sucked out of my ears, I spin, and send out texts to my family, the nanny, friends, making sure that someone in the real world is remembering to pick my kids up from camp, feed them, wait, school starts next week, we need to meet the teacher at 4pm Friday!

The Weekend through Monday:

Since Friday, fever of 105 degrees, moved to the ICU, put on pressers, can’t move, no walking, tears, fevers, blood pressure, more pressers, sucked into a dark whirlpool, Monday morning Josh starts diuretics, a sliver of light.

Tuesday:

At 6:30am the pressers were removed. We walked. All Josh’s doctors were skeptical of Josh getting out of the hospital by August 22nd (first day of school), but they said we could stretch and try to shoot for it. The medical team’s goal was to get him home by August 26th, my oldest daughters birthday. But Josh didn’t/doesn’t want to wait until next week and neither do I. As I sat with him in a post fever chemo deloted haze and listened to doctors and nurses repeat that you don’t just walk home from the ICU, I jumped from my seat. YOU DON’T WALK OUT OF THE ICU, BUT YOU DO WALK OUT OF THE BONE MARROW TRANSPLANT UNIT!!!!!

When a doctor enters the ICU, a patient is immediately seen in ICU colored glasses, which means they are seen as sick and incapable of walking out. Doctors and nurses were not going to continue to look at Josh with ICU colored glasses. I WOULD GET HIM THE F*** OUT!

If you know me, you know when I get passionate about something I don’t quit. I marched throughout the 3rd floor/transplant and harassed every upper level charge nurse, social worker, doctor, and psychologist who works on Josh’s case. I told them that Josh must be moved from the ICU and it must be done ASAP. Also, he MUST come home this weekend. We have help at home. Josh’s dad is a practicing ER doctor. We can hire home care, but psychologically Josh must be home by our children’s first day of school.

By the end of the day, I conceded that maybe it was best to keep him over night in the ICU to watch his blood pressure, but we were staying there for only 24 hours. This meant he was off the pressers at 6:30am and then he needed to move by 6:31am on Wednesday. Throughout the day, nurses and doctors kept repeating the exit goal was August 22nd.

Wednesday:

At 6:31 Wednesday, Josh’s dad helped move him out of the ICU to the regular transplant wing. He got a view of the parking garage, which is much improved from our original view of a lone broom left on a roof. Suddenly, discharge date became Friday, August 17th. The requirements for discharge, Josh must lose 20 lbs. of fluid, no fever for 24 hours, and take all oral medications. We are weighting for the edema to fly far away, but everything else on the list has been checked off.

Josh walked 2.56 miles today, 5,369 steps. On Friday, Saturday, Sunday, Monday, he was plugged into the wall with no extension chord. He took less than 20 steps total.

Wednesday afternoon, hospital brain suck again, Josh received a call from Josh’s disability insurance, stating our claim for disability was terminated because the paperwork from the hospital was never sent to Aetna. Josh answered the phone when I was in the cafeteria, not the call you want to hear after leaving the ICU. Immediately, I turned around to call the clinic, but then decided why call the clinic, when I can march downstairs and camp out in their front office until someone faxes Aetna our disability paperwork, so that is how I spent my Wednesday afternoon.

As an aside, this morning our social worker did acupuncture on my ears while Josh napped. I guess it is used on methadone addicts, for smoking cessation, and PTSD. FYI, in case you can’t tell, cancer and transplants cause PTSD for patients and their caregivers. Diagnosis/Treatment/ICU, this is trauma like I have never felt before and hopefully won’t feel again. The needles zonked me out in a blissful haze on a hard wooden chair in Josh’s room. It was magical and centered me, carried me through today with no tears and not too much fury.

New exit date is Friday, August 19th. Fingers and toes are crossed that the edema melts off his body and we get Josh home to his kids. Thanks for the prayers and please keep them coming.

 

 

 

4 thoughts on “A Haze with Light on the Horizon

  1. Thinking about you a lot today. We all were. We all are. Next year, you will be in Montana at this time with lots of screeching cousins. We’ll have a party on the childproof bridge over the West Boulder River. We’re waiting for you to get here to do that.

    Prayers flying your way. xoxo

  2. Our now 2nd grade daughters were at Temple Sinai together…

    You’re very brave and strong to share your story and I hope that writing is helping just a bit. I just wanted you to know that we’re all praying for the Solot family with all our might every night….

    Be well. You are not alone.

    kml

  3. Justine,
    My husband Jerry I want you to know that we follow your ordeal, and we pray constantly for Josh and you, your kids, for Bonnie and Jerry, for the doctors, nurses and support staff, and for all the family and friends that are helping to hold you up. We are many miles away, but God, who hears the prayers that everyone is praying, is right there with you.
    Susan Bowyer (cousin to Josh)

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