I have followed others blogs, and they have helped me cope with life in the mito world. I have never actually posted anything before, but hope it could help someone as others helped me. I have thought about it for a long time, but just couldn't do it for many reasons. So here I am, finding myself putting it all out there. For me, I hope this can be an outlet for my feelings and frustrations and also a journal.
I'm tired - just so exhausted. This has been a really bad week for Trace. Appointments with epileptologist, GI, Pneumovax 23 vaccine, optomologist, visit to ER, and a surgery to remove two chalazions on eyelids. Five trips to the medical center in four days - I live about and 1 1/2 hours away. I do count my blessings to be that close to somewhere that can actually treat Trace though. Met with his Epileptologist to discuss what we are going to do about him having so many seizures again. He is now on threee seizure meds - Keppra, Topamax and Clonazepam. We decided to add the Clonazepam after it worked last month. We had to use it for two weeks after a high fever which landed him in the ER and caused Trace to have the most seizures he's ever had. Talk about scary. Trace received the Pneumovax 23 shot during his appointment with neuro. Appointment with GI didn't go well, Trace spiked a fever of 102. He screamed for a good 30 minutes, then finally fell asleep on me, after seizures which always get worse with fever. Trace did not gain any weight - again. I really thought he would have because he's been eating a little better. So GI put him on a medicine to increase his appetitie. It's so terrible tasting that he's thrown up twice after taking it. That should really help!! We are counting every calorie and hoping when we go back in one month that he's gained weight. After countless tests, they can't find out why he doesn't want to eat and has diaherra. Left the medical center with fever down a little from tylenol. He ran fever and was up throughout the night having seizures. Went to optomology appointment next AM to set up surgery to remove chalazion from upper eyelid. Trace's fever still wouldn't subside even with tylenol and advil, he wouldn't walk or even sit up on his own. So back to the medical center for an ER visit, exactly one month since the last visit. After numerous tests, nothing except high lactic acid which is normal for Trace. Ran IV fluids and we decided to take him home at 3:00 AM instead of being admitted. His seizures were better so home we went, still running fever. The only explanation was a reaction to the Pneumovax shot. We actually were home on Wednesday, exhausted, but home all day. Trace's fever finally broke late morning - yeah!! Back to the hospital Thursday for visit with anesthesia before surgery Friday AM. Trace gave the doctor and nurses the stare down every time they came in his room. I hate that he knows something bad might happen. Surgery went well, he ended up having another chalazion in his lower lid and had it removed too. He's been so good at not picking on his eye. I really thought we would have to tie him up to keep him from touching it :-) Yesterday he was very tired. He slept for an hour in the morning, then fell back to sleep at 3:30 till 1:00 AM. He was up from 1:00 to 4:30 crying. I don't know why, I wish he could tell me. Trace sleeping all day worked out well, because Thomas, Peyton & I sat outside together till dark. It was wonderful, we actually felt like a normal family for a few hours. I was able to work with Peyton on her cheer tryout. Tryouts are this week and I think she looks really good. She's got so much energy it's crazy!
So there it is, my first post, so tired I can barely read it and probably makes no sense. I do have to say I feel better just letting it all out.