I know I have said that this whole journey has been such a roller coaster, but it's been quite a while since we had such tremendous ups and downs over the course of just a few days. I guess it's just a reminder to us that we are still on board with plenty of dips, turns and loop-dee-loops ahead.
I felt like I was on the crazy train instead of a roller coaster this time, though. Lack of sleep makes me lose my mind almost as bad as Ty lost his on Tuesday night/Wednesday morning. I waited to share any updates because I didn't want to worry you all! Today I am fine. Yesterday was a very good day, too. We are getting back to normal in so many ways. I will quickly retrace the course of the past few days to loop you in on Ty's progress.
On Wednesday I was up and caring for Ty and Gavin on about 45 minutes of solid sleep. Ty had terrible head pain throughout the entire day... and it had been getting progressively worse over the course of two weeks. I noticed he wasn't moving his arms and legs like he used to, and when I tried to test his strength it seemed that he lost so much of the ability he gained back over the summer. He was barely moving his hands latterally, when before he was lifting them up as high as his face. He wasn't responding with his legs to any of my requests. I felt some muscle activation here and there, but it was so little compared to what he was able to do just days/weeks prior. I managed to remain calm about it, but it was as if all of my internal organs were twisted like pretzels, and my mind was racing trying to figure out what could be happening besides tumor growth. It often crossed my mind that maybe we stopped the hyperbaric oxygen therapy too soon, but then I reassured myself that he began having bouts of head pain before he finished his course of treatment. We had that scan to prove that it couldn't be shunt related and there weren't any spontaneous brain bleeds. My favorite theory is that Ty was suffering a flare-up that is just par for the course as he heals. I decided to stick to that pleasant theory, especially knowing how much he has improved since yesterday.
Lou was away at a seminar in Boston from Thursday to Sunday and if it wasn't for my in-laws, I would have been completely lost in my worry without him here. Thankfully, my amazing sister-in-law, Debi, took Gavin for hours on end so he could play outside and enjoy his cousins while I cared for Ty and gave him the attention he has been needing. My mother-in-law took shifts, too, and at night my family stuck around to watch movies, do our nails and sleep with Gavin so I wouldn't have to leave Ty in the middle of the night to tend to him (Gavin wakes up several times a night ever since we moved him to a bed). It was such a blessing, and I am so grateful.
Friday morning Ty had terrible head pain that lasted about an hour. I resisted giving him morphine because I didn't want to alter his mental state, especially after all he went through after our sleepless night (it took a long time for him to get back to himself - he was so irratable and emotional for two days following the episode). Luckily, that morning was the worst in the past four days. He was better in the afternoon and had a pretty pleasant Friday. Then Saturday he was doing really good, I noticed he had more energy and more of an appetite. He was moving a little more. Then, yesterday it was like he was back to his old self. Lou was home and Ty was showing off his arm lifts all day long. He even went for a walk around the neighborhood and a swim in the pool for about an hour, which was only the second time all summer and the longest he stayed in the water. It was great therapy for him. "Splashing" Daddy and kicking... we had so much fun. Yesterday was one of the best days we've had in a very long time.
So, I believe he is healing and sometimes healing hurts. He is doing well and that means we are doing well. Ty's health and mood pretty much dictates the health and the mood of the entire household and for now, all is good. Thank you all so much for your concern and your support.
With all of our love, the Campbell family.
This morning is a lot of the same. He is physically strong and he isn't suffering headaches.