So I haven’t updated in a while. The more I write, the more I feel guilty for sharing my feelings.
Like I’m supposed to have this all under control. I’m supposed to be this Godly wife who just trusts that God has everything in His control and to just face each day with HIS joy and take care of the husband and children that I prayed for so many years.
I don’t have it under control. I know God does, but my human-ness gets in the way of completely resting in that peace.
Things have been {*understatement of the year forthcoming*} .... chaotic around here.
Just after my last post, it happened. I could see Jon wasn’t doing well and that we were in for a rough patch.
On the 26th of January, Jon fell {again} and hit his head. He recovered and got back in bed. About 20 minutes later he started vomiting. Repeatedly. I called the doctor, and his doctor said with his problems - head to the ER. So I frantically made some phone calls for someone to watch Riley, someone to be at the house when the girls got off the bus, notified my work my work wouldn’t be in by deadline, and notified Jon’s parents. My mother came here and took care of kiddos until Kent {father-in-law} could get back from New York, and Ronnie {mother-in-law} met me at the hospital. They did a CT scan and x-ray of his shoulder, which he was complaining was hurting, and said everything was fine and he could go home. The discharge instructions were “Don’t fall. Repeat concussions are more dangerous the closer they are together.” Encouraging, since he’s had probably a dozen in the last 10 months. We headed home.
Friday he was tired, but okay. This is the day I received a packet of papers from Social Security wanting ALL medical information from the last 12 months - every doctor he saw, dates of visits, tests run, treatment received, etc. - and they wanted it by 2/3. I panicked. We had had plans for a date night (a rarity!) Friday night and a sitter for the kids. Jon felt he wasn’t quite up to the movie & dinner we had planned due to the headache, so we just went for dinner and rented a movie to watch at home. It was nice and went well.
Saturday. All was well. He did fall once in the morning in Riley’s bedroom, but was okay. That afternoon he lay in bed watching TV while my mom & I worked on cutting out all the kids’ {58} valentines with my Cricut. We ran out of paper, so she took Nevaeh with her for a craft store run. While she was gone, it all went crazy. Jon came flying up the stairs. He walked around and gave each of us a kiss on the head and said I love you in a half-drunk kind of voice. Then he was just acting silly...very loud silly. At first I thought wow! This is the Jon I always imagined with our kids - where has he been?! As he continued, I realized something was wrong. VERY wrong. I tried to talk to him and ask him to calm down (he couldn’t hold still). I asked him to look at me and talk to me. He couldn’t. He got annoyed at me trying to talk to him and d-a-n-c-e-d down the stairs. I said “Honey, please sit on your butt to go down the stairs to be safe.” He replied “I can’t! I’m dancing!!!” Once downstairs we could hear him singing theme songs, talking to the TV, and just incessant talking. I went down to check on him and he was literally spastic on the bed. Legs and arms and whole body just constant movement. And he couldn’t help it. I still couldn’t get him to calm down and really focus to talk to me so that I knew he was okay. So I took his daily pill box and the med box and said I’ll be back. I called my mother and told her to hurry. She was almost home. When she got home she said call the doctor. I called the doc on call and he said he needs another CT.
I went down and tried to talk to him about it and explain what was going on. He just kept chirping in a bubbly voice I’m fine. I’m just going to take my meds and go to sleep. He wouldn’t listen. So I called his parents. They came immediately. THEN he got angry. Agitated and angry. Upset. He was completely lost somewhere inside his mind. My heart was breaking and I had to walk out of the room for a moment. I was terrified what happened to my husband and if he was going to be like this forever. We finally got him to angrily and reluctantly get in the car. We headed to Urgent Care hoping to cut out some time. Oops. They didn’t have a CT scan, just x-ray and US. Fortunately they weren’t busy, and we were out in no time... but headed to York ER. Once there they did labs before he was even back in an ER bed, and then a repeat CT. Jon didn’t remember anything at this point from 48 hours before. The date - gone. {Just this weekend he asked if we could rent the same movie we watched that night & I had to remind him we’d already seen it}. Everything was fine, but the doctors understood the concern and were going to keep him overnight for observation. However, we expressed concern that he would simply be watched overnight and released with no progress and that he was being followed by Hershey docs. So they said they couldn’t direct admit him to Hershey, but they would call and speak to the neurology department there. They did, and they agreed to see Jon, but through the ER there as well. By the time he was discharged from York it was 2 a.m., so I needed to get home so my mom could go home. Kent & Ronnie took Jon to Hershey. My understanding is this.
The amazing neurologist had pulled Jon’s records and was EXTREMELY thorough, and was very familiar with Jon’s history. He expressed that based on the CT’s, he ‘simply’ has a concussion, and is “fine” in that respect. However, he noticed that some of the medications Jon is on sent up a red flag for him. Apparently 3 of them could interact and could have caused the delusional behavior. He was sent home with advice to see a psychiatrist within 2 weeks to address the medication problems, and of course a follow up with his family practitioner. The doctor also made the suggestion that it might not be a bad plan to completely start fresh with his medications. He hasn’t been UNmedicated in 8 years (this week is exactly 8 years since he got sick), and it might be a good thing to detox him gradually and then build and see what treatment works best for him.
So Monday was spent on the phone with insurance and doctor’s offices & the Social Security Office telling them I needed MUCH more time than a week to get all that paperwork together. They agreed and gave me a 2 week extension. However, every psychiatric practice I called said they had a 3-4 month waiting list for new patients (if they were accepting them at all). I didn’t know what to do. He had a follow up appointment with his family practitioner on Tuesday. We discussed the medication concern that Hershey had. He was not in agreement about a complete detoxification, but agreed we should decrease some medications. He did. I suggested he try to get Jon in with a psychiatrist, because I wasn’t having any luck. He wasn’t confident he could do any better, but he would “try” to get him in somewhere sooner.
For two weeks from that appointment he pretty much stays downstairs to avoid more injuries, yet continues to fall even in the few feet he walks downstairs & has hit his head more times. He also started having chest pains. He feels. Like. Crap.
Friday 2/10 we got a phone call from a psychiatrist’s office. The man scheduling the appointment said that the doctor was informed there were some concerns with medication interactions and that’s why Jon was being referred. The psychiatrist had reviewed his records, and was extremely concerned. However, he was booked until May also. HOWEVER, he is so concerned it needs to be addressed asap. He is staying after his last appointment on Wednesday to see Jonathan. Praise. God.
Fast forward to Monday 2/13. He had a follow up with his family practitioner. He informed the doctor of all his symptoms and issues. The doctor recommended decreasing his pain medication a dose further. He asked a lot of questions about the chest pain. He ordered a stress test (not one he has to walk though). He ordered a heart monitor to check for any irregular heart issues. He also recommended we get a second opinion from neurosurgery because he still feels the falls are from his spinal cord being pinched. So that is the plan.
These next two weeks are super crazy. He had an appointment 2/13 with family doc. 2/15 I take Nevaeh to her pediatrician at 1:30 for a slew of problems she’s been having that I’ve just been putting off because I can’t deal with anything else. Later that same day at 5:30 is Jon’s appointment with the psychiatrist. Monday, 2/20Jonathan finally sees the internist at Hershey (first time)! We are so excited and hopeful for answers. Tuesday 2/21 Nevaeh sees a nutritionist. If you know her, you can guess why. No more needs to be said. But I’m thankful because I think it will be helpful for the whole family. Thursday he goes to the cardiologist for his heart monitor. Friday he goes to the hospital for his stress test.
Saturday the 25th. Oh, sweet Saturday. It’s what’s getting me through these two weeks of doctors. Church of the Open Door has a “retreat” day for women who are wives/mother’s/caretakers of husbands or children with disabilities. Spa treatments, pedicures, haircuts, quiet worship. Free. This is an amazing, AMAZING thing. I almost missed out on the opportunity, but God knows what He’s doing!! And I am praying to find some connections, friendships, and support. Especially support. Maybe there are support groups I don’t even know about. I cannot wait.
So a day in the life right now consists of trying to keep Jon safe, which unfortunately for him and me means he needs to stay put. Unfortunately for him, because it’s depressing to be confined. Unfortunately for me (and I don’t mean this selfishly) because it means he needs to constantly have his needs brought to him. I am learning to be have a servant’s heart/attitude more and more, that’s for sure. Slowly, but I’m learning.
The girls are struggling with some behaviors at school, which I think is due to stress at home. Riley is definitely acting out to get attention any way he can, and it’s hard for Jon especially because he pushes the wrong buttons for him for the wrong kind of attention, and it just ends up in hurt emotions.
But we’re together. We’re taking one day at a time. One step at a time. Meals show up occasionally, which is such a blessing. Jon’s grandparents came from out of town for a visit, and while they were here helped us to get things done around the house. Cleaning, cooking, hanging mirrors. What a blessing. I’m always stressed come Tuesday when I pick up work, and I stress myself out thinking how in the world am I going to get all this work done by deadline, and every week God opens doors and He takes care of everything. It’s not easy, and I’m tired. We just have to do things a bit differently around here, ya know?
So that’s the latest update.
Things you can pray for =
Pray for all these upcoming appointments. That we will have answers. That the doctors will have compassion. That Jon will find some relief.
Pray for doors to open. Doors for some assistive equipment for Jon, nursing help, and any help that is available to make life just a little bit more peaceful for all of us.
Pray for the kids emotionally. Nuff said.
I’ll try to update with all these appointments as I can. Until next time...
