Back in April, I took Jared to get an MRI prior to his surgery. We started walking in the general area of the rehab facility, and we both said that it gave us the creeps. We both said we couldn't handle walking through there again, even if it was just to reminisce about old times. So when I say that he's back there now, you know times are pretty desperate!
So much to say here, and a lot of awful moments to relive...
Jared wasn't recovering very well from this surgery. They kept him in the hospital a day longer than anticipated because his drain was draining more than they wanted, and he was really nauseated this time. When he finally did come home, I was a little nervous that he wasn't doing well but I was just glad to have him back home after spending 10 days in the hospital. And I was really frustrated with the whole situation. I started wondering if we were over-treating him. It seems like every time we go to the hospital, they do way more than he can handle. And he HATES the hospital. He gets depressed spending so much time there. So I had made the decision that we were done with that place. I think he felt the same way. Right before surgery he was feeling the best he had in a while, and after surgery he was horrible.
He was once again given a PICC line with heavy antibiotics, so we knew he wasn't going to feel well for a couple weeks. The night he got home, he started having seizures. I wasn't too worried until the next day when they continued. Usually he will have one, maybe two in one day, but that is extremely rare. But he started having a LOT of them. That first full day home he probably had 8 seizures. I kept asking if he wanted me to call the doctor, and he said no. We both knew if we called the doctor, they were going to send us straight back to the hospital. So we decided to adjust his medications a little to see if we could get them to go away. The next day he continued to have seizures. He probably had about 10 that next day. I was a wreck because I didn't know what to do. I didn't want to drop the ball on his care, but I didn't want to send him back! He wanted to be home. So the following day I called his doctor and told him we did not want to go back to the hospital. He said he thought his brain was probably just going through trauma from the surgery, and he expected them to go away. He told us to get some labs drawn at a local hospital to make sure the antibiotics weren't throwing off the anti-seizure pills. He also told us to give him another pill that relaxes the body. He thought it would at least make the seizures less frequent or decrease the strength. So once he started taking those pills, the seizures stopped altogether. The pills make him completely out of it. So I knew for a couple days he would probably sleep all day, which he did. But at least the seizures stopped.
Over the next few days he just didn't seem to be getting better. In fact, he seemed to be declining. I also noticed that his face was drooping on one side and he had lost all movement in his right arm. He also started jumbling and slurring his words. So I thought he must have had a stroke at some point. His face and speech eventually recovered. I started getting worried that he just wasn't going to pull through the effects of this surgery. Usually a week after this type of surgery he's doing pretty good.
Last week was probably the worst, most stressful week of my life. On Monday he was doing horribly, but Tuesday he seemed to be doing quite a bit better. Wednesday he wasn't doing well at all. He threw up in the middle of the night, and then again at his MRI. He wasn't talking much, and just seemed "off." I knew we had an appointment with his doctor the following day (Thurs), so I figured he could address our concerns. Wednesday night at about 9pm I woke him up to go to the bathroom for the night. He seemed really tired, and when I helped him sit up, he fell back on the bed. I gave him a few more minutes to wake up, then I tried again. He finally got to the point that he attempted to stand up, but immediately collapsed on the floor. And he had a completely blank look. I called a neighbor to come help me get him back in bed. A couple other neighbors showed up to help. One of them is a firefighter and reminded me that I needed to make sure he took his pills for the night, and that if he started having seizures during the night I probably needed to call an ambulance. After they left he seemed like he had perked up a little, so I tried to get him to take his pills. I cut them up in smaller pieces so he'd have an easier time swallowing. He barely got the first one down, so I decided just to give him the most important pills, but on the second pill, he choked and threw up everywhere. At that point I truly thought he wasn't going to make it through the night. I was there the night that his mother died, and he was showing a lot of the same signs. So I tried to make him as comfortable as possible by cleaning him up the best I could, then I got a towel and tried to lift him up to stick the towel under him.
I told the kids that dad wasn't feeling well, and had them give him a kiss and tell him they loved him to help him feel better. I tried not to be dramatic. I didn't want them to panic.
That was a long night. I didn't sleep much.
The next morning came. I called his doctor and explained the situation and told him I didn't think there was any way I could get him to the appointment. He said I needed to take him to the ER. I told him that I didn't want Jared to die in the hospital. I wanted him to be at home with his family. He said he understood, but that Jared needed to be assessed so that they could make some decisions. Three neighbors came over and carried Jared to the car, and I drove him to the ER. He was alert, and seemed to understand everything I said, but he couldn't say much. Basically just yes and no.
After being in the ER a few minutes, a lady came in and told us they were getting ready to transfer him to his room. I told her we didn't want that, and asked why they were hospitalizing him! She thought that the doctors had come and talked to me to explain the situation, but they hadn't. She basically said that his MRI was extremely concerning, to the point that they were putting him in the Neuro Critical Care Unit. That was all I needed to hear to be okay with him being hospitalized, but I was really mad that if his MRI was "extremely concerning," why hadn't they called us immediately the day before?
I called the oncologist to see if he agreed with what they were doing, and asked if they had seen the MRI. He said they had seen it, and that they agreed he needed to be in critical care. He said that he knew it was concerning, but didn't know he was doing so horribly, otherwise they would've taken action earlier. Basically the MRI showed that his brain had extreme swelling EVERYWHERE, which is why he was completely shutting down.
Later that afternoon the oncologist team came to see him in critical care to explain the situation. There was extreme swelling, but also some new cancer activity. Once again they expressed that they were surprised with how much activity in so little time. (We seem to be getting that news a lot now.) They were pumping him with sodium to pull some of the swelling from the brain, but they said it was a short-term fix. They told us they needed to start the Avastin as quickly as possible. They normally like to wait 4 weeks after surgery (because it inhibits the ability to heal) but they said they didn't have a choice but to get it started. So Avastin will help the swelling, the big question is how long. So eventually all of this will all happen again, and there won't be any "fixes" next time. That's the part I try not to think about.
That first day in the critical care, he couldn't answer basic questions. He didn't know the month or year, he couldn't say my name. The nurse would try to give him options for the answers and tried to get him to show which answer was right with his hand.
The next day (last Friday), he was able to say my name again, and he seemed much more alert. He couldn't remember much of the two previous days. But he still couldn't figure out the month or year. He would always answer February and 1980... and then couldn't figure out which year in the 1980s.
Our time in the Critical Care was actually entertaining because I knew Jared's nurse. He was a guy I hung out with in college, and both Jared and Neil remembered him because he was THAT guy at the party that was so loud and funny that you don't forget him. He kept all of us laughing, which was much-needed at the time.
He stayed in critical care until Saturday night, and then they transferred him to a regular room at Huntsman.
He was making daily improvement, and he got movement back in his right arm. But reality hit again on Tuesday when the speech therapist came to assess him. I knew he had been giving short answers, but I didn't realize how severe the problem was. She asked him what his kids did during the day, and he gave no response. She asked him a list of questions with short answers, and some of the really easy questions he was missing. For example, she asked if the lights were on, he responded "no," and they were on. She also asked him to list as many animals as he could in one minute, and he couldn't list any. After the assessment, she explained that some of the neurons in his brain were damaged, and that he needed to re-train the brain to use another path.
I think that was when I shifted gears from "fall-apart mode" to "angry mode." (Angry probably isn't a strong enough word.) As if being stuck in a hospital and missing the kids' first day of school and Jace's football games wasn't bad enough, now he didn't have the ability to communicate with our kids, or tell them how he feels about them or how proud he is of them. And that made me livid. Is it really too much to ask for Jared to have just a tiny shred of dignity and pride??!! Angry probably isn't a great place to be, but at least I can function in "angry mode." I wasn't functioning very well in "fall-apart mode."
When I left Wednesday night, I asked if there was anything I could do for him before I left. He said, "yes." I asked what he wanted and he didn't say anything. I said, "Do you know what you want, but can't figure out how to say it?" He said, "yes," so I spent 15 minutes playing the guessing game and finally figured out that he wanted me to get him a movie.
He headed to rehab on Thursday. So far I've seen quite a bit of improvement each day. He seems to be getting around a little better, and his speech is improving. His answers are getting a little longer. He still struggles getting out what he wants to say. Their goal in rehab is to get him using his right arm to where he can dress himself and function without much help, and to be able to convey what he wants. Rehab is a SLOW process, so we're hoping he stays on track to come home sometime in the next week. A couple days ago I was really overwhelmed at the thought of him coming home because he seemed really dependent. Last night when I was with him, I wasn't as overwhelmed, so that should continue to improve over the next few days.
So that's pretty much the past couple weeks in a nutshell. And believe it or not, I'm sparing many horrible details.
As a little personal side note (probably too personal), I mentioned that we were with Linda a few hours before she passed away five years ago. While we were there that night, Jared turned on some music so it wasn't so quiet. A new song came on by Trace Adkins that I hadn't heard before:
"You're gonna miss this
You're gonna want this back
You're gonna wish these days hadn't gone by so fast
These Are Some Good Times
So take a good look around
You may not know it now
But you're gonna miss this"
I remember looking at Jared's dad as I listened to the words, completely heart-broken for him. I knew that he had been through so much taking care of her, and that he was completely exhausted. But I knew he would miss all of it. Ever since that night I have a hard time listening to that song. I usually turn the radio station if it comes on. I heard the song on the radio a couple days ago. As horrible, stressful, and exhausting as all of this has been, I know that someday I will miss this and want it back. And to be completely honest - that, too, makes me angry.
Pictures taken from Drew and Averie's short visit. The picture of Jared giving Averie a kiss is one of my favorites.
