The Deitrick Family

Coeur d Alene, ID

$500.00 raised of $16,678.74

Mortgage/Rent $16,678.74

6 months

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Story

Name

Jesse Deitrick

Injury/Illness

Wegener's GPA (very rare vasculitis)

Jesse has been hospitalized for 2 months after being diagnosed with a very rare form of vasculitis, called Wegener's Granulomatosis with Polyangiitis. It affects all of his blood vessels by increasing inflammation throughout his body, causing severe coughing, mouth tenderness, SOB, tremors, severe edema, erratic blood sugars (he's also type 1 diabetic), constant 9/10 and 10/10 chest/back/lung/knee pain that has been uncontrolled by pain meds, hearing loss, sudden weakness/fall risk, skin hypersensitivity, heart damage due to severe tachycardia, and increasing blood clots in his lungs and throughout his body. One chemo treatment failed, plasmapheresis had to be stopped due to an infection in the port site, and he has now had 2 infusions of Cytoxan, resulting in extreme nausea, hair loss, inability to eat or sleep, depression, and severe anxiety. I have been with him to care for him during the times he can't hear and I need to translate between his specialists and him. He lost his job during his extended hospitalization, plus he can't drive now and has to use a walker or cane to get around. We're trying to get to the Mayo Clinic for the appt that was just approved, plus pay bills and not lose our home. Any help you can give would be so appreciated!

Family Updates

September 29, 2023

Life for Jesse Conquering Wegener's GPA

Jesse just got back on Sunday night from being an inpatient at Mayo Clinic St Mary's Hospital for 10 days. Monday morning, we had to call 911, as he woke with severe chills and could barely speak. Labs showed immediately that he has an infection, but they don't know what it is yet. He was admitted to Kootenai Medical Center that night, and they have run multiple tests. Because of the GPA and chemo, he has no immune system, so he could have been exposed to anything out there. Between flying to MN on the 13th, and back on the 24th, he's had a lot of places to have caught something.

Due to the large amounts of prednisone and sever coughing, he now has three broken vertebrae in his back. Neuro surgery did an MRI tonight, to see what they can do to help with his back pain.

He just had a 4th bronchoscopy yesterday, where the doctor found increased inflammation, causing bleeding in his lungs. The doctor was barely able to pass her scope through the upper left lobe or the middle right lobe due to extreme airway blockage.

She said that in cases of airway blockage they would normally have the patient wear a sort of vest to help with that issue but, due to him having three fractured vertebrae, she will not go that route. She said she will talk to the hospitalist about having another chest x-ray of the left side, since he feels like something's broken there. He can hardly catch his breath, so has been awake trying to breathe in the last 2 nights.

Last night, I told the nurse that his chart shows he's taking calcium and vitamin D to combat the effects that the prednisone on his bones, but that he has not taken it. I insisted on them starting it immediately today.

The worst case scenario at this point would be that a portion of his lungs could collapse, if he can't get air to those areas. The doctor was able to collect a lot of new phlegm to send off to the lab, so we're hoping that we can find out in a few days what this infection is that he's fighting.

His bones are so brittle now that it is also deeply concerning to keep him from anything else breaking. His heart rate last night consistently stated between 120 and 140 beats per minute. His oxygen is now turned up to double what it has been. We have requested a transfer back to the Mayo Hospital, and are trusting God to keep our son safe, with the best care, no matter where he ends up. So very weary tonight! Thank you for continuing to partner with us!