PAPA UPDATE 8/24
Hello all:
Thought I'd update you tonight on the latest.
Cameron's mom & I spoke with Dr. Friedrichsdorf from the MN Children's Hospital this week. He is a symptom & pain management specialist, and in close contact with Dr. Janousek, our neurologist. Dr. Wetmore from Mayo has given him the go ahead to oversee Cameron's situation, and make decisions toward his well-being. I like him very much, and feel good that he is onboard.
Dr. Friedrichsdorf examined Cameron last Wednesday, and noted that the skin breakdown we are seeing is likely due to the prolonged steroid use. It can make the skin very fragile and delicate. We are seeing a very quick recovery from the blisters, and he said that, if we see more issues, he will order a special cream developed to help matters.
He spoke with Dr. Janousek about the Trileptal (the anti-seizure med) and they decided that, since the seizures are under control, they are going to try spreading out his doses through the day to minimize any peak effects, rather than taper it down at this point. So, instead of two and a half pills twice a day, Cameron will get 1.5 pills in the morning, 2 in the afternoon, and 1.5 in the evening. We'll see if that makes a difference.
Dr. Friedrichsdorf also recommended that we do a three-day boost of the steroids to see if we can get Cameron to a more lucid, stable place. We started today, and are giving him three doses of 4mg per day, instead of 2mg twice a day. It is a big jump, but it is only for three days. We will re-evaluate things midweek.
The child psychologist, Dr. Gibbon, also met with Cameron Wednesday, and they had a good session. I delayed giving him his morning meds until after their session, so he would be at least somewhat conversational during their time together.
She said that he was obviously receiving the info, but it took him a while to respond. He was very receptive to guided self-hypnosis (he's always been very good at it), and I got the impression that it was a good session. She will meet with Cameron weekly, probably alternating between homes.
Scott & I picked up Cameron this morning (he is with us one Sunday per month) and he was really out of it all day today. He couldn't speak, was mostly unresponsive, but by suppertime he was a little more 'in his body.' We had chicken soup with matzo balls for dinner, which he ate a lot of. Scott left for Detroit early this evening for a training, but will be back home tomorrow night and will be here the rest of the week. After not seeing Cameron for about two weeks (he's been working in Portland, OR and Long Island, NY), it was kind of a shock, he said, to see the state Cameron was in today. As I said, he was quite out of it.
Cameron's swallowing was a bit better tonight than last week, which is good. He munched some organic cucumbers and heirloom tomatoes while the soup was cooling, and he handled the crunchy cukes impressively well. We watched a couple fun shows on the Food Network, which he really seemed to enjoy. He transfered to bed well, and is sleeping soundly. I will update you through the week as we (hopefully) see changes for the better with the increased steroids and other changes.
The Brain Candy benefit Thursday night was lovely. It was beautifully executed, and while we wish attendance had been better, we were grateful for those who did come, and everyone seemed to have a great time. I still haven't heard what was raised for Cameron's magazine & The Brain Candy Project. The auction was amazing. There are a number of great items that were not bid on, so we will be auctioning them on eBay soon. I will be sure to let you know. Up to date info will be available at
www.braincandyproject.org, so keep checking there as well.
Keep those healing thoughts and prayers strongly coming.
I will write more updates soon. Who knows, if Cameron turns a corner for the better this week, you might actually hear from him! Wouldn't that be great?
Much love & gratitude,
Henry
