The first time that Jared felt "off" was Thanksgiving Day. He was a little dizzy, but just figured it was part of the recovery. Right after the Thanksgiving holiday, Jared returned to work. It was a big accomplishment that he was able to drive himself! We had spent the couple weeks before practicing, since his reflexes were still slow, and his movement in his leg was still limited. But he felt comfortable. It was weird to have him gone, but he was really happy to get life back to "normal." It was an adjustment. Sitting up for long periods of time would make him really light-headed. He would get home from work, get out of the car, and I would watch him hold to the side for a couple minutes to catch his bearings. He had really started to get light-headed and dizzy. But there was so much going on to cause this - the long days, the radiation treatments, and tapering from the steroids. He had told his radiation oncologist about the dizziness, but he figured it was something minor. After a week of work, things started to deteriorate quickly. The first week of December, he went from walking quite well Sunday (the 4th), to needing a cane on Tuesday (6th), to being back in a wheelchair Thursday (8th). I also noticed that his incision was starting to bulge a little. And the dizziness was getting unbearable. He had missed work the whole week.
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| The "irritated stitch" |
We met with the radiation oncologist, who once again, claimed that he had now been in radiation for three weeks, and that it was probably a side-effect of radiation. I also pointed out the bulging incision. He figured it was an irritated stitch. But while we were at Huntsman, we realized we still hadn't met with the chemo oncologist yet, so they squeezed us in. After TWO hours of waiting in the room (I finally had to go sit in the car with the two screaming little kids - we had been at the hospital over four hours by this point), the doctor came in and immediately saw that Jared wasn't doing well. He said that it might be normal, but that we should have it checked out just to make sure. He ordered an MRI for the following day. We went home absolutely exhausted and starved. I dropped everyone off at home and went to re-fill a presciption and get dinner. I returned home 45 minutes later to a fire truck and ambulance outside my house. Some neighbors were outside and informed me that Jared had had a seizure, and that Brynlee called 9-1-1. I walked in to what felt like a million strangers in my home. Jared was alert and told me what had happened. We told the ambulance to take him up to Salt Lake (since that's where he had been receiving care and had his records), I arranged the kids' care, and headed up to the ER.
They did another MRI, which showed another large mass, same size as before, same location. The ER doctor said it was an infection. I basically told him I had heard that before and asked if he was sure. He seemed pretty sure. We were once again told we needed to wait to see a specialist. We knew it could take all night. It was about 11pm by this point, Jared sent me home and assured me that he would call if he heard anything from the specialist. Of course, I never received a call!
I obviously didn't sleep well that night, but at one point I woke up (it was probably 4 in the morning) and had an overwhelming impression - Don't worry, things may appear worse before they get better. I was really nervous to call Jared the next morning. Sure enough, the neurosurgeon had told him that because he hadn't shown any signs of an infection (fevers, vomiting, chills, etc), they were pretty sure it was tumor re-growth. (To have tumor re-growth, this soon, during treatment, would be absolutely HORRIBLE. That would mean we were looking at weeks, if not days.) He had known this information all night (but didn't tell me!) and didn't sleep at all. They wanted to wait another day for surgery because he was on blood-thinners. That extra day wait was another LONG day. They had done other tests that had indicated possible infection, so they weren't sure. They had done another MRI in the evening that was supposed to be more conclusive. We waited for the results. My heart would jump everytime someone passed the room. But the results never came. Because of the impression I had, I was pretty confident it was an infection, but the specialists were telling us differently, so it was not a fun day. By evening his head was bulging quite a bit. We still hadn't heard anything, so at about 11pm I headed home.
Jared called at about 6am and told me he was prepping for surgery. I didn't know if I would make it up there in time to see him before. I got there and called the surgery area right as they were wheeling him off to surgery, so they let me just go and see him quick in the hall. His head was about the explode! I couldn't believe it! They told me that they would call the waiting room from surgery once they knew more.
I got a call about an hour later. It was an infection!!! I never thought I would be so excited to hear that my husband had a brain infection, but it was SUCH a relief!!! And it was a relief to know that there was, in fact, something wrong with him that was causing all of the setbacks.
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| Incision after second surgery The scab on lower part is from them sewing a drainage bag to his head. |
Surgery was much shorter this time, and I was able to see him a couple hours later. And he was more alert two hours after this surgery than he was two weeks after the first surgery! I was also relieved that things went so quickly because Brynlee had a big dance recital that afternoon and I knew she really wanted me there. So I left Jared for a few hours so I could head to the recital, then rushed back to the hospital.
They had antibiotics pumping through his IV until they got the culture back. It was staph infection. We didn't know how long to anticipate his stay at the hospital this time. He had been in surgery on Saturday (the 10th of Dec.), and I remember telling him that I was going to send positive vibes his way to get him out by Tuesday. That seemed like a LONG shot. Realistically I thought it would be Thursday. But the positive vibes worked, and they released him Tuesday!
