Home » AL Amyloidosis » A Day of Tears

A Day of Tears

August 15th, may be the day of tears. I cried all over the place, the coffee shop, Josh’s room, and I stalked down a familiar nurse to tell her I needed a hug and cried to her too. When Josh checked into the hospital more than two weeks ago August 15th was the day he had in his mind that he would be returning home, but here we are and it is August 15th and Josh is still in the ICU. When we checked in, we were told that once he hits an ANC (white blood count) of 500 then he could be home.An ANC of 500 was our goal, the magic number, that would free us from hell, but today Josh has an ANC of 1,900 and we are still in the ICU.

It was a hellish weekend. Josh had spiking fevers, rigors, full body rash, and was sicker than I have ever seen anyone in my entire life. Terrifying, but that word doesn’t capture it. As he shook uncontrollably, all I could do was hug his legs, and chant to myself, Please God, heal him. Please God, heal him. Please God.

The specialists debated whether Josh had an infection or whether this was engraftment syndrome. Engraftment syndrome is when the new bone marrow kicks into action and starts producing blood (obviously not the medical definition) and creates high fevers and rashes. However, engraftment syndrome and infection present similarly, and doctors can’t risk infection when a patient’s ANC is 0, because infection can lead to death. Due to the risk of infection, the doctors placed him on antibiotics. On Saturday he had CT scan of his lungs, and initially it was read by radiologists as pneumonia. They loaded him up with fluids, antibiotics, platelets, and a blood transfusion, to protect him if there was a bacterial infection. His blood pressure plummeted, so he was put on a presser machine to keep his pressure up to protect his organs. He was given granix injections to jump start blood production to help fight infection.The granix created horrendous bone pain, but it worked. Over the weekend his ANC jumped from 0-1950.

Josh and I were hyper fixated on his ANC. In our minds, an ANC of 500 equals green light to go home. However, his ANC is 1950 and we are still here. An unforeseen road block of high temperature and low blood pressure crashed into us.

This morning, August 15th, we were discouraged, more than discouraged. Josh discovered his Amyloid due to swelling in his legs. Due to all the treatments over the weekend, Josh gained 40 lbs. of fluid. Josh believed that the fluid in his lungs that appeared in the CT scan was caused by the edema in his abdomen, but no one could do anything about it because of the risk of sepsis or pneumonia. He was miserable from the fluid, but the doctors wouldn’t let him use diuretics to release the fluid because they didn’t want a further decrease in blood pressure. We felt hopeless watching the blood pressure cuff tighten every 15 minutes, waiting for his blood pressure to stabilize. His blood pressure improved throughout the day and we hoped they would remove the pressers (blood pressure machines), only to have his pressure dip while he was sleeping. The pressers suck because Josh is not allowed to walk when hooked to them, and when I say walk, I mean literally he is not permitted to walk to the bathroom. Nurses bring a bucket bedside. The pressers feel like happiness vacuums and last night they added another presser. We had been praying to get off one and they gave us another. There are no words. Until today the only answer was to be patient and his blood pressure will rise, but it is nearly impossible to be patient, watching someone you love suffer.

Today, August 15th, the doctors officially diagnosed Josh with engraftment syndrome. He does not have pneumonia!!! The fluid in his lungs is from the edema (as Josh thought). Dr. Matous says he has no infection. On the scale of one to ten of worrying about Josh’s life being at stake, Dr. Matous gave him a one. He removed him from antibiotics. The nephrologist agreed to begin diuresis, and they continue to try to wean him from the pressers. Josh is miserable and suffering, but currently his life is not at stake. We can see a glimmer of light. The doctors agree the fluid is a problem and they are dealing with it.

Josh wants to be home. I want Josh home.The kids want Josh home. It is depressing being stuck in the hospital while other families finish their summer vacations. We were supposed to leave for Montana this week, but now we don’t know whether Josh will be home for the kids first day of school or our oldest’s 7th birthday. We choose to believe that he will be. Although we are well aware that life goes on for others while we are stuck in the ICU, it is hard browsing social media to see #bestdayever when Josh suffers in the ICU. Social media, the blessing and the curse.

“Do you know what my birthday wish is when I blow out the candles?” My daughter whispered before bed. I hugged her, I’ve missed more bedtimes in the last couple weeks than I have over the past seven years, and Josh has missed more than that. Until now, he has never spent more than two nights away from the kids. It hurts.

“What?” I asked.

“My birthday wish is that Daddy gets better and no one in our family gets this sick ever again.” She squeezed me tight.

“That is my wish too.”

“Last year I wished my stuffed animals could talk.” She giggled.

“I remember. Well, hopefully, this one comes true.” I laughed.

I pray Josh exceeds all the doctors expectations. I pray he comes home this week. I pray he is home before our oldest baby’s birthday. PRAYERS, MAGIC, BIRTHDAY CANDLE WISHES, NO MORE INVISIBLE ROAD BLOCKS.





5 thoughts on “A Day of Tears

  1. That Josh is getting better starting NOW makes it #bestdayever!! Certainly for us here in MT, #bestnewsever… 😄😄😄😄

  2. “Last year I wished my stuffed animals could talk.”

    Oh the sweetness. And such a more serious wish for this year. I’m sorry she can’t just rewish the same from last year. Thinking of you.

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