The Rest of Our Week

Brad is blogging for me again since I'm still reeling with what we've been through and it hurts my shoulder a bit to type. To tell the truth, I'm a little nervous to put all this info out there because I'm a little embarrassed by it. (I'll post about that in the next day or so.) However, I feel like maybe it's a way to be more authentic and show the "real" me instead of this blog being the "highlight reel" to portray my "perfect life". I'll warn you now: it's a long post. My hubby has lots of words! :)

We rolled out of the ER and into room 20 of the CCU about 1:00 a.m. Another round of intake questions were asked and answered again. More assessing and prodding and by 2:00 a.m. it was time to sleep. Jordan was on some IV pain killers and was resting peacefully. The nurses brought me a recliner and I settled into it for a night of sleep next to Jordan's hospital bed. Unfortunately, I am all too versed in this.

Sunday morning was upon us and we woke to meet our new nurse for the day. Donna was her name and we ended up loving her. She was great and made us feel right at home. Later in the day she even brought our kids two cupcakes. The day would pretty much summarized by the phrase...hurry up and wait.

A good friend called and brought me breakfast. Around noon Jordan was transferred into a wheelchair and taken for an MRI of her brain, with and without contrast. While Jordan was away the hospitalist of the day (she too was great) came by to visit. We discussed Jordan's medical history and the great news that the CT of the brain was clean. She said she would be back later.

Around 1:00 Jordan returned, ate lunch and many friends began coming to visit. Some more friends brought lunch for me, clothes for Jordan, and our kids for a visit. The visit with the kids was good for us but much better for them. After about 30 minutes it was time for them to leave. As I was hugging Eli goodbye he said in my ear, "I'm glad mom isn't dead". No joke Eli, no joke I told him. Eli had experienced a lot of death too close to these events. Two weeks earlier while coming home they came upon a bicycle auto accident where a bicyclist was killed. Then less than a week earlier he had attended MADISON'S memorial.

Later in the afternoon another neurosurgeon friend who read Jordan's MRI texted and told me everything was normal with her MRI. Jordan's shoulder continued to hurt but otherwise we were doing pretty good. About 5:00 p.m. the hospitalist was back and officially told us that the MRI was normal. She then told us she was going to call an orthopedic surgeon to see Jordan for her shoulder pain and a neurologist. About 5:30 one of my orthopedic surgeon friends was in our room examining Jordan. He confirmed the hypothesis that she either dislocated or partially dislocated her shoulder during the seizure because her arms were pulling so hard or when she hit the tile floor. He said he would order an MRI if we wanted to confirm but that the protocol is to keep the shoulder immobilized for about 4 weeks.

We were preparing to go upstairs to the 6th floor when the neurologist came in to visit. Again I explained what transpired but this time in extreme detail. He told us he had read the MRI and there was nothing abnormal. He did explain that possibly two brain lobes in the front may be different sizes which isn't necessarily abnormal but if true after consulting with the radiologist on Monday could sometimes cause seizures. He then told us we would have the EEG completed Monday morning and if clear we would have some tough choices to make about whether to start on a seizure medication or not. He explained that the probability of those who have had one seizure and those who have never had one is the same for having a seizure. Thus, if Jordan began the drugs and didn't have a seizure again one could conclude that the drugs were working but this couldn't ever be confirmed. Then the question is when to stop them, if at all. We thanked him and he left our room.

About five minutes later he walked back into our room but this time carrying Jordan's chart. He asked how long Jordan had been taking Tramadol? Jordan responded since approximately August. Her oncologist prescribed it upon request because she didn't want to rely on a narcotic like hydrocodone for break through pain she experiences from the chemo drug she is on. The neurologist then said, "This drug is known to lower the seizure threshold." I asked him to explain what he meant by that. He then said he sees people who have no history of seizures have them while on Tramadol all of the time. Wow! Almost 24 hours after the seizure we had our first true clue what may have caused the seizure.

A couple of hours later we were in room 607 and settling in for the night. More medical history questions were asked and answered. Jordan was starving and I made a run to the cafeteria for a bag of chips. We were doing better. Jordan seemed to be feeling good and we were relieved to be out of CCU and one step closer to home and possibly have learned what caused the seizure.

Tramadol. We then discussed the pros and cons of going on seizure drugs and he explained the known side effects. Headaches and severe rashes were the known side effects for the drug he uses. The one the hospital uses are anxiety and restlessness. Jordan commented that during her EEG she couldn't sit still and had been anxious all day. She had just chalked it up to being in the hospital and anxious to go home. I called the orthopedic surgeon and asked if we could postpone the MRI of the shoulder and do it as an out patient since the neurologist said we could go home. He agreed and after all of the orders and follow up office appointments were made were were discharged about 3:30. We went and filled our prescriptions and were home by 4:30.

It had been a long two days; however, we were home and we seemed to have answers. I had a meeting at work that night and headed up to the hospital. Jordan was at home crying. Little did we know that crying was going to become the new normal...even as I type.

Monday night when I came home from my meeting and was tucking her in bed she asked me why I was so happy? I didn't know I was so happy but from her perspective I was. I explained that based on the previous two days I was glad to be home and know that the likely cause was something so simple to fix -- stop taking Tramadol. Jordan took her seizure drug and went to sleep. That night Jordan didn't sleep much -- another trend that continues even today.

Tuesday was like all other Tuesdays except Jordan was restless. She was feeling guilty about having had a seizure. She was crying. She was normal. She was up and down to say the least. That night I told her if she was going to continue having these weird mood swings she didn't need to take the anti-seizure drug. We went to sleep without taking it.

Wednesday was about the same with some small improvement over Tuesday. About 11:00, however, Jordan texted me at work and asked me to call. She explained that she had been reading about Tramadol and all the weird side effects she had been experiencing she believed were due to withdrawal from Tramadol and not from the seizure drug. Later that day I read the same and it made sense. Unfortunately, it said that the symptoms could last for up to 7 days or longer. We were on day four.

Later that night around 9:00 p.m. the kids were in bed. I had asked Jordan to show me how to correct the spelling of a misspelled word from my "Seizure" post. She sat down on the barstool in front of the counter where her computer sits and started showing me how to do it. We looked for it and she made the corrections. Then she said, "Um, I'm seeing things.". I replied, "Jordan, are you okay?" She said she felt fine but she was seeing things floating and was pointing around her computer. Then she told me she saw two of me. "Two of me?" I asked. She confirmed and I told her she was scaring me and that I wanted her to keep talking to me. She said, "What do you want me to say"? The tone of her voice was eerily similar to the tone of her voice when she said, "You are Brad" on Saturday night. I asked her if she had taken some medicine recently and she told me she had just taken her chemo, an Ambien and the anti seizure drug.

By this point I knew something was going on that was by no means normal. She was not seizing and she was breathing normal so I was more perplexed than scared. Since I didn't know what was going on and whether she was about to start seizing again I asked her if she could move to the couch. I put my arms under her armpits and raised her up while staring in her eyes. Jordan deadpanned, "Uh, my legs don't work". Her legs were working, but she was shuffling them slowly. We moved to the couch and she laid her head down on the arm. I kept talking to her while holding her hand. I was trying to process what was happening and also trying to decide what I should do in case things went from bad to worse again. I had my cell phone on me. I called our next door neighbors and quickly asked if they would come over as Jordan was acting weird. Then Jordan told me the bowling pins and the cat cookie jar on the mantle were dancing. I said, "They are dancing?" She confirmed. I think I may have even said, "Are you drunk"?

About this time our neighbors came in and she is an eye doctor and did the follow my finger test. She asked if I saw Jordan's eyes flicker up and down as she took her finger above Jordan's forehead. I didn't but upon her second time around I did. She said that this is what the police look for when doing sobriety tests. She said if the eyes flutter like that there is something happening with the nerves near the brain stem of the brain. We all hypothesized that she may be having another seizure but this time a petit mal. I told them to keep their eye on her and keep her talking. She was talking by this time and sounded pretty normal. She was telling them all about her reading this morning about the side effects of Tramadol. I found the number to the neurologist and was working my way through the answering service when Jordan told me she was still seeing two of me and two of Vanessa but not Dave (he was in her peripheral).

I explained to the neurologist what had just transpired. He didn't say whether he thought it was a seizure or not. He told us to make up the dose of missed seizure drugs and to call if something else happened. He also said he didn't prescribe Tramadol so he didn't know about the withdrawal side effects of it, but to ask the oncologist who did.

Eventually Jordan wasn't seeing double or dancing bowling pins and cats. Our neighbors left and when I was talking to Jordan about the events that just transpired she couldn't remember them all although she seemed to be with us the entire time. I ended up calling a friend who is a pharmacists and asked him what exactly was in Tramadol that we could discern from reading the internet. He told us that it is basically a pain killer that treats pain by telling the brain to discern pain differently. To do this it is basically part antidepressant and help a synthetic narcotic like hydrocodone. He said stopping an antidepressant cold turkey like she did could definitely explain her side effects include possibly another seizure. He recommended asking her PCP to to prescribe a small dose of prozac or something similar (antidepressant) to help her step down from the drug. I called our neighbors on the other side of us who is a PCP and he agreed with the logic but since he didn't have a doctor patient-relationship established and thus a chart to document that he was not comfortable doing that tonight but to let him know tomorrow if the neurologist or oncologist wouldn't or we couldn't get a hold of them. We then went to bed at 1:00.

The three days have been about the same....except Jordan had another double vision episode last night right before bed time. This time her voice didn't change and things were not dancing but were instead spinning. Her parents were in for the weekend and came into the room to see it for themselves. After about 20 minutes she went to sleep.

This morning she told me she slept great and it was the best night of sleep she had had all week. She then told me she took an Ambien, anti seizure drug, and chemo right before going to bed. I asked if she was seeing double and she look perplexed. She hadn't remembered anything from last night. Ambien seems to be the link as she had taken it both nights about 5 minutes before seeing double. So, tonight we are not taking Ambien.

So folks, that is a lot but you are now up to speed on all that has been happening. Please pray that Jordan continues improving and that the withdrawal symptoms subside soon. Thanks for all of the food and prayers as we continue to take each day at a time. Monday is day 9 of no Tramadol!