Okay.
So yesterday (2/20) Jon finally saw the internist at Hershey. I wouldn’t mind him seeing this man as his primary care doctor...
First, Jon had labs drawn here in York on Friday to check his Imipramine levels, Vitamin D, and Vitamin B12 levels. So I had him call his PCP to get those results to take with us.
Not great news on 2 out of 3.
Imipramine = should be 100 - 200. He was 194. Praise God he’s not in the 500’s toxic range anymore! GOOD!
Vitamin D = should be 50 - 70. He was 14. He is now 8. NOT GOOD.
Vitamin B12 = should be 1,000 (per his neurologist). He was at 179. He is now 122. NOT GOOD.
Our appointment was at 3:20 and we were to arrive at 3:00 for check-in, intake, etc. We tried to take a shortcut ... and didn’t get there until right at 3:20. Oops! They were fine though, and he was back in a room by 3:30. The nurse was only in with him maybe five minutes, and just a few minutes later a resident came in. She was great too! I’m not sure how long she was in with us, but it was a while. Then she went and got Dr. Simons and they were both in with us. When the appointment was over, everyone else had already gone home - it was around 5:45. He was very thorough and in no hurry to rush us out the door. Praise God, because Jon’s case needs focus and thought for as many details as there are.
After bringing him up to speed on EVERYTHING...we started discussing.
First let me explain for those of you who may not understand Jon’s “falls”. Imagine the feeling of when someone comes up behind you and knocks your knees out from behind. Well, his legs do this kind of “jerk” motion and he loses feeling and down he goes - all within a matter of a split second, with no warning. He then will lie there until his legs regain some feeling in them (like they were asleep), and eventually back on his feet again.
Dr. Simons believes this is what is called a “Myoclonic Jerk”. He says this is caused by two things.
First, the narcotic he is on for his pain. He said how medicine has changed so much, and that they are learning things now about narcotics that he didn’t learn about when he was in med school many years ago, and they have to learn how these things are evolving.
Secondly, he believes he has “Serotonin Syndrome” caused by the Imipramine and narcotic together causing his body to produce too much serotonin and remain in his brain (also causing the memory problems, and the delirium he had after his concussions).
The course of action to reverse both of these causes is to take him off the Imipramine and ANY narcotics. Now Jon has not been narcotic free for 8 years. This is an overwhelming thought, but he is willing to do anything it takes. We’re taking one step at a time. He will decrease the two medications over the course of at least 2 months (not sure how long they will take to decrease the narcotic but he should be off the Imipramine within a month) until he is off them completely. He is still on a few other pain medications that are not narcotics. We’ll see how his body functions at that point and go from there. BUT, once those two medications are out of his system, we should see improvement. Since Jon’s PCP was NOT on board with taking him off narcotics completely, Dr. Simons will be sending a letter to him stating what needs to happen and why he needs to do this.
HOWEVER...
The Vitamin B12 & D deficiencies are still an increasing problem. No matter what we’re doing (including B12 injections, taking bariatric special vitamins PLUS additional supplements) his numbers continue to drop. This can also be adding to the jerking and muscle weakness.
Dr. Simons said he was referring Jon to an Endocrinologist. I informed him he had seen one here in York in December, and pulled the physician notes from my file to show him. He was dissatisfied with her lack of thoroughness (my words), so he said you need to see someone here at Hershey. So, like I said, everyone was gone when our appointment was over. This morning we received a call he has an appointment with Endo @ Hershey on March 28th. Dr. Simons needs them to figure out WHY he is not absorbing his vitamins, and figure out how to get them in him. Until then, he continues to take what he has.
So, we left there with a plan. But it takes time.
I’ll be honest, I left there with mixed emotions.
Happy that we have a doctor who cares and is working for us, not on his own agenda. Happy that he has hope for healing for Jon. We don’t know how complete, as he still has fibromyalgia and chronic pain, but to be able to walk, drive, and function again.
Angry. Mostly at his PCP. I know being a doctor is hard. I know that medicine changes and grows. I KNOW there’s a lot. But if you don’t know what you’re doing -- if you don’t know how to manage a medication (or three), then DON’T. Refer your patient to someone who can. Don’t make a 31 year old man live a year of his life in a wheelchair debilitated because all you know to do is add more drugs. It just seemed so effortless for Dr. Simons to point out these problems. Like a “duh” kind of moment. Yet the PCP didn’t know anything about it. So infuriating. I gotta stop talking about that part.
So we received some frustrating news (that this could have been addressed a long time ago), some disappointing news (that his vitamins are decreasing), and some hopeful news - we know what some problems are and how to treat them!!!
So please continue to pray for us. Stress is high. It’s easy to say words out of anger, sleep deprivation, anxiety, and just plain stress. I’m doing the best I can to work when I can, but this past week I realized I just can’t keep doing the amount of hours I was doing before. My employer is fine with that - I take what I want, it’s just learning to get by with less pay ... for now. But I was burning the candle at both ends to try to maintain everything the “way it was”, and I just can’t.
So we continue to take one day at a time. And now we wait. Wait for the appointment at Endo, and wait for the meds to decrease and leave his body to heal.
Thank you so much to everyone who has brought us meals, offered to watch the kids, and just given me a hug and encouraging word. Remember, Jon is here too. I know men don’t like mushy gushy hugs and I love you’s, but a phone call, stop by to sit and talk, watch a movie, watch sports or whatever men do! He needs encouragement too.
This week =
Nevaeh sees the nutritionist tonight @ 5:00. We’re hoping to get some insight on how to keep her from becoming too overweight. We care immensely about her and her health, and she’s not at a good weight right now, so we need to do what we can to teach her and help her young.
Friday morning Jon has his stress test @ York Hospital early in the morning (Kent is taking him).
So those are the upcoming appointments this week and please continue to pray!!!
Tuesday, February 21, 2012
Thursday, February 16, 2012
Yesterday afternoon I took Nevaeh to her pediatrician. She has been complaining of constant headaches and frequent belly pains with the headaches, and she has had problems sleeping (both getting to sleep and staying asleep) for a loooong time. We thought back in the summer that she may be having headaches because she needed glasses. She did need them, and got those in September. Nothing has improved. Her words to the doctor were that she has headaches every day, some worse than others. So it’s time to try a medication. She’s had an MRI and tests to rule out anything serious. So the doctor suggested Elavil (over Periactin since she the Periactin can stimulate appetite and we don’t need that...). However, it can cause heart arrhythmias if the person has a heart condition. So we left the doctor’s office and went to Apple Hill and got an EKG done. Once we hear the results of that (a day or two), the doctor will decide if she can start the Elavil.
Then at 5:30 Jonathan had his appointment with the psychiatrist. WOW. First of all let me commend this doctor. He had excellent “bedside manners”, was kind, listened to our questions, and talked with us like equals, not degrading us. And the icing on the cake? This man normally sees his last patient from 5:15 to 5:30. He agreed to this appointment because of the urgency expressed to him. We did not leave that office until 6:45, and he was hoping not to miss his daughter’s ballet practice, and not ONCE did we feel rushed. Now THAT is how a physician should be. I’m not saying I think my life is more important than a doctor’s personal life, but you know what I mean.
So this hour and 15 minutes was spent filling him in on ALL of Jon’s life history. That’s a book in itself! When we finally got to the here and now, we started discussing this medication issue that Hershey had pointed out. I’ll do my best to explain.
Imipramine. It is an anti-depressant, but can be prescribed for pain, which Jon has been taking to treat his headaches/migraines. Up until January Jon was taking 250mg per day for months. In January he told the doctor his pain was increasing overall and he needed a med change or something. The doctor’s first response was let’s see if we can increase the Imipramine. Then he hesitated and said well, maybe we should check your levels (to our knowledge he’d never done this in the 2 years he’d been on it). So we did. When the levels came back, the nurse called and said skip a day completely, then decrease to 150 mg because your levels are elevated and “near toxicity”. She wouldn't tell us the levels. So he did what she said. Then this whole concussion and delirium thing happened and Hershey said hmm...maybe the meds contributed to the delirium. So his family doctor told him just two weeks ago to decrease to 100mg, as well as decreased his primary pain medication a dose. Yesterday at the psychiatrist as he was pulling up records on his computer, I asked him if he would please tell me what the last level of Imipramine was.
Now before I tell you his number, I will tell you that the psychiatrist informed me that 150-200 (units or whatever) was normal range (so obviously 200 being the highest they would care to see it). He also informed me that with this medication, unless you keep it within that therapeutic range, it’s not going to benefit you, and if anything it can harm you and cause heart problems and KILL YOU. Yes. He said this. He also said one needs to have labs drawn every three months to make sure they are maintaining within that therapeutic level. Now. Jon’s number??? 523. Yes. MORE than double the therapeutic level. I was shocked. I was angry. So my next question was, if this isn’t at a therapeutic level, and it’s not doing him any good, he should stop taking it, no? He looked up what the half-life of the med is, and said he could stop taking it immediately and within 24 hours it would be out of his system. 24 hours. 24 hours!! And yet his family doctor simply decreased him little by little. No wonder he ordered the stress test and heart monitor next week. He’s covering his butt since he realizes he’s been overmedicating someone and possibly giving him heart problems. Oh the anger I feel. Let me tell you. Well, actually I won’t. I’m sure you can guess.
So we left the psychiatrist's office with the plan to skip last night’s dose, then tonight start to take just 50 mg per day. He will have his levels checked on Friday. Since the half-life is only 24 hours, he should be within therapeutic range. We will keep him on the 50 mg dose for a few weeks to see if he feels it helps at all, and if not, he’ll stop it completely. The psychiatrist doesn’t “need” to see him back, but we’re going to follow up in March and see how things are going.
So now some of you may have pieced another thing together...the medication Nevaeh will be on is in the same family of medicines that this Imipramine is. Thus the EKG. So now when I hear from her pediatrician as to her EKG results, I’m going to discuss my concerns with her. Most likely if we simply check her labs regularly (as should have been done with Jon), it will be okay. We’ll see.
It just blows my mind that Jon’s family doctor was obviously medicating him all these years with this medication that he didn’t know how to properly monitor (which is why he ended up at the psychiatrist last night!) and could have killed him!!! But hopefully, maybe, he’ll feel better overall with this toxic level of medicine out of his body - and now I’m praying that he DOESN’T have a heart problem - most likely from these meds, because that’s been mentioned that maybe he’s falling because of an irregularity with his heart and I wasn’t worried before because I thought heart problem? Wouldn’t that be more obvious?? Well, now I see where the heart issue is coming from. And it’s scarier than ever.
So keep praying.
Then at 5:30 Jonathan had his appointment with the psychiatrist. WOW. First of all let me commend this doctor. He had excellent “bedside manners”, was kind, listened to our questions, and talked with us like equals, not degrading us. And the icing on the cake? This man normally sees his last patient from 5:15 to 5:30. He agreed to this appointment because of the urgency expressed to him. We did not leave that office until 6:45, and he was hoping not to miss his daughter’s ballet practice, and not ONCE did we feel rushed. Now THAT is how a physician should be. I’m not saying I think my life is more important than a doctor’s personal life, but you know what I mean.
So this hour and 15 minutes was spent filling him in on ALL of Jon’s life history. That’s a book in itself! When we finally got to the here and now, we started discussing this medication issue that Hershey had pointed out. I’ll do my best to explain.
Imipramine. It is an anti-depressant, but can be prescribed for pain, which Jon has been taking to treat his headaches/migraines. Up until January Jon was taking 250mg per day for months. In January he told the doctor his pain was increasing overall and he needed a med change or something. The doctor’s first response was let’s see if we can increase the Imipramine. Then he hesitated and said well, maybe we should check your levels (to our knowledge he’d never done this in the 2 years he’d been on it). So we did. When the levels came back, the nurse called and said skip a day completely, then decrease to 150 mg because your levels are elevated and “near toxicity”. She wouldn't tell us the levels. So he did what she said. Then this whole concussion and delirium thing happened and Hershey said hmm...maybe the meds contributed to the delirium. So his family doctor told him just two weeks ago to decrease to 100mg, as well as decreased his primary pain medication a dose. Yesterday at the psychiatrist as he was pulling up records on his computer, I asked him if he would please tell me what the last level of Imipramine was.
Now before I tell you his number, I will tell you that the psychiatrist informed me that 150-200 (units or whatever) was normal range (so obviously 200 being the highest they would care to see it). He also informed me that with this medication, unless you keep it within that therapeutic range, it’s not going to benefit you, and if anything it can harm you and cause heart problems and KILL YOU. Yes. He said this. He also said one needs to have labs drawn every three months to make sure they are maintaining within that therapeutic level. Now. Jon’s number??? 523. Yes. MORE than double the therapeutic level. I was shocked. I was angry. So my next question was, if this isn’t at a therapeutic level, and it’s not doing him any good, he should stop taking it, no? He looked up what the half-life of the med is, and said he could stop taking it immediately and within 24 hours it would be out of his system. 24 hours. 24 hours!! And yet his family doctor simply decreased him little by little. No wonder he ordered the stress test and heart monitor next week. He’s covering his butt since he realizes he’s been overmedicating someone and possibly giving him heart problems. Oh the anger I feel. Let me tell you. Well, actually I won’t. I’m sure you can guess.
So we left the psychiatrist's office with the plan to skip last night’s dose, then tonight start to take just 50 mg per day. He will have his levels checked on Friday. Since the half-life is only 24 hours, he should be within therapeutic range. We will keep him on the 50 mg dose for a few weeks to see if he feels it helps at all, and if not, he’ll stop it completely. The psychiatrist doesn’t “need” to see him back, but we’re going to follow up in March and see how things are going.
So now some of you may have pieced another thing together...the medication Nevaeh will be on is in the same family of medicines that this Imipramine is. Thus the EKG. So now when I hear from her pediatrician as to her EKG results, I’m going to discuss my concerns with her. Most likely if we simply check her labs regularly (as should have been done with Jon), it will be okay. We’ll see.
It just blows my mind that Jon’s family doctor was obviously medicating him all these years with this medication that he didn’t know how to properly monitor (which is why he ended up at the psychiatrist last night!) and could have killed him!!! But hopefully, maybe, he’ll feel better overall with this toxic level of medicine out of his body - and now I’m praying that he DOESN’T have a heart problem - most likely from these meds, because that’s been mentioned that maybe he’s falling because of an irregularity with his heart and I wasn’t worried before because I thought heart problem? Wouldn’t that be more obvious?? Well, now I see where the heart issue is coming from. And it’s scarier than ever.
So keep praying.
Tuesday, February 14, 2012
Much needed update.
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...
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...
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