Even a burrito can’t convince him to wake up on the right side of the bed.
The local symphony and opera put on a special concert for “special” kids tonight. Despite Mony’s pain we decided to give it a try as they only do this special concert once a year. As expected, Ramona enjoyed the ride there and lasted through 1/3 of the first piece. Then we walked the streets of the city for 45 minutes. Thankfully it was 45F tonight. But what wasn’t expected was Nina’s response. “This is so good I just don’t know what to say.” And, “I can’t believe this is real!” Were some of my favorite Nina quotes. She LOVED it. We will be going back. Grey did ok until he realized I’d left with Mony and began to lament my absence. But the “special” audience masked all his bad behavior and allowed for the iPhone to distract him.
“How do you feel about the symphony Ramona? No, really, don’t hold back. Be honest.”
The red/pain is back. But this time we are armed with more meds and a rental hospital bed. So far we’ve been able to keep the pain down. She even grins when we adjust her bed up and down. If this one works for us our insurance co. will agree to buy us our own. They really do make those things as ugly as possible. When we get our own I’m gonna have to get out some paints or fabric or something.
The neurologist basically said that part of her nervous system appears to be having a jacked-up response (not his actual description). He thinks that the meds she is currently on are the best way to deal with her pain, but admitted that the Mayo Clinic docs may know more and that he would contact them for ideas. We’ve increased her doses and it is working, as long as she isn’t out of her bed for more than a couple of hours. (Consequently, it took 4 hours to go to her doctor and back, so…pain galore.) We will continue to dope her until she is cross-eyed (we didn’t really care about LEARNING anything at school, anyway) until we hear back from him about the Mayo docs.
On another note: anybody have ideas for how to help Grey stop having nightmares every hour through the night. I miss my sanity.
“Looks like you’re still fat. Looks like you’re gonna have more babies.”
YAY! Oh happy day! Look who went to school today. She slept the ENTIRE day yesterday then woke today bright eyed and ready to roll. We’ll see how she feels when she gets home, but so far so good. Almost 2 weeks of unexplained hellish pain has inexplicably vanished. Now she just has the regular amount of pain (that’s just a sad sentence). Hope it lasts. Thanks for all the thoughts and prayers. I know how powerful that is. Yay!
Horse drawn train. Brought to you by our incontinent population.
We visited another doctor this week. She was as confused about Ramona’s continued pain as all the others, but she did increase one of Mo’s pain meds. We’ll see if it helps. This morning her left leg was red and hot (last week it was her right leg). She has not had a fever but has slept almost all day. I’m glad she’s able to sleep, but it’s unsettling to see her sleep so deeply. I think her body is just so worn out. It has certainly gone through horrible abuse. In 10 days she will see her neurologist. Perhaps he’ll have some answers.
Any and all prayers are welcome :)
There was a sweet weather surprise for us when we got home.
The CT scan showed nothing. The fever and swelling are gone. She’s still in pain, more than usual, that it. But there is nothing they can do for her at the hospital that I can’t do at home, so we’ve come home. Once again Ramona has rendered an entire shift of doctors befuddled.
We are back again. Sigh.
Wednesday afternoon Mony’s right hip (yes, the bad one that causes her constant pain) was red and swollen. I thought she’d been sitting funky in her wheelchair, but then the fever came. Well, the fever left, but the redness stayed. So, Friday morning I took her to the doctor. The doctor sent us to the ER. The ER did what it does best: almost nothing. Blood test show nothing. X-rays show nothing. And after 10 hours waiting for an MRI, without food or water, Ramona’s fever came back with vengeance and her pain doubled (cuz that’s what happens when you deprive her body of what it needs). So I cancelled the MRI (as they still weren’t ready for her) and she ate a delicious smothered burrito and loaded up on fluids. Four hours later the pain is finally under control and she is sleeping. We still don’t know what’s up with the hip. They did finally get her a CT scan, but the results are not back. You will know when I know. Good freaking night!
