Moments of panic…

Jake called a few Saturdays ago. I didn’t immediately panic-he’d been calling more regularly since we’d moved to Taylorville. Mom, I’m not doing so good. My heart dropped and panic set in. After a few sentences, I decided Jake felt overwhelmed by his final projects. I lectured him about not giving up. You don’t understand, Mom, something’s wrong, different. My dad went over to see him. The day wore on. I was worried to death. Meanwhile Jake called both of his doctors. “Jake, your steroids are too high.” This made me mad. Every week I had contacted his nurse by phone or email and questioned his medication. I decided to drive over myself. It didn’t take long to determine that he needed to go to the ER and have his “good eye” checked. It had been so light sensitive, and Jake felt something was different. At 4:30 PM IL time, we headed to Indy.  We waited and waited with drunks who were belching, screaming, and bleeding. I heard the doctor talking as he stitched up the result of being hit in the face with a beer bottle. I stretched out on the hard, cold floor next to Jake’s bed. At 4 AM, he was released. His eye looked ok. This past weekend, the scenario was repeating. We were texting his doctors, googling graft vs host and tied up in knots of panic and fear. We were headed from Taylorville to Indianapolis when both doctors agreed to see him the next morning. Jake and I high-fived that we wouldn’t have to spend the day in the ER. The dryness in his good eye, the effects of graft vs host and the wicked side effects of the high dose of steroids were all to blame. As if the cornea rupture and long healing process wasn’t bad enough. He still can’t see through the membranes she stitched over the cornea. Hopefully soon….his good eye is extremely sensitive to light, blurry a good deal of the time and irritated. He constantly uses several eye drops and is back up to handfuls of pills. The prednisone that once saved his life is causing dizziness, vertigo, lightheadedness, panic attacks, weight gain, aches and pains, and other unpleasant side effects. Jake, who 45 days ago had moved into an apartment and was taking 3 classes at Rose, is back staying with us, can’t drive and had to sit out this semester. When he had to drop Chemistry, they charged 150.00. We are still waiting to see the charges at Eskenazi hospital for the emergency surgery cost, and we don’t know the extent of the damage to his eye. I had driven home to close on our house. I said goodbye to our home of 19 years and wondered if we had made a big mistake. I like our new home, town and job, but I cannot escape feeling guilty for not being 100% there for my family. My dad has taken Jake to several appointments. It’s not fair, the drive makes him nervous. But he wants me to save my sick days. He knows it’s hard to make sub plans. I took Jake to Indy on Tuesday. It was good-the way it should have been. I’m comfortable navigating and talking to the doctors. My students missed me, and were wide-eyed and empathetic when I told them why I was gone. I hadn’t said too much about Jake. For the first time in awhile, I couldn’t talk about him- I was too emotional, scared. We have a plan though. The prednisone will be tapered, but another medicine will be added to hopefully control the graft vs host disease. Once again his doctors are dealing with unknowns. They had never seen a cornea rupture because of gvh disease. This has been a tough one. Jake had started to feel good again for the first time in years. This made his side effects feel much worse this time. It’s been awhile since I have felt this scared, and out of control of a situation. I haven’t been able to find the blessing in disguise in this one…

2 thoughts on “Moments of panic…”

  1. I am so very sorry and sad to read this. Bless Jake. He is such a strong person as you and Dave are also. I feel so very bad for all of you.
    I hope that Molly is having a good sophomore year at SIUe. I know she worries about Jake too.
    I will continue to keep Jake and your family in my thoughts and prayers.
    Hugs to you Marianne, I can’t imagine what you have and still are going through. You are a strong Mom & a very good Mom. Please don’t doubt yourself.
    Thoughts, prayers, love & hugs,
    Brandi

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