On Friday we also started Naproxen. Jason's health insurance through Mills is a high deductible plan, but with Mills having a spending account that will cover up to the deductible ($2600) and after that it will start being 20%, up to the individual out-of-pocket maximum of $5000/ $10,000 for family max. Anyway, we are going to hit hers super fast with a 30 day supply of Naproxen costing $289.68. Last year, we came no where close the deductible!
How the hell and who the hell comes up with these figures? The world of health insurance is just such an evil, immoral business, I really have no respect for it at all. After the deductible, prescriptions will start being classified in different tiers, with varying and slightly more reasonable co-pays, but not sure what Naproxen will fall into. And that is just the first of the various medications....
My friend K is going to see about getting us on Medical. :(
And the worst part is, it tastes (and smells) HORRIBLE. Phoebe never once complained about Motrin, but this stuff is foul! I think it already has a flavor, but I'm going to see if the pharmacy can add another flavor to it or if I have to wait for the next batch? In the meantime, I've experimented with mixing it with apple juice (needs a lot to cover the taste and then takes forever for her to force her to drink a whole dose.... and then she peed sooooo much), orange juice (seems to mask the flavor a bit more, but I don't think she liked orange juice that much either), and most recently and perhaps most successfully--- the juice that comes in a pre-packaged cup of diced peaches! Another suggestion I've gotten is to get some powdered hawaiian punch type of drink, and add that directly with a little water. Anything to make this stuff taste better. It's so expensive, you can't waste a drop!!
Anyway, Naproxen. I'd gotten it Thursday evening, but, well, just didn't want to give her a new medicine and promptly put her to sleep... wanted to have time for us to observe how she did with it. And to be honest, she didn't have a great day on Friday. She was very, very stiff. I wonder if the switch over from the Motrin meant her body wasn't getting as much relief from either drug. Her right knee was bothering her as well as the left. She was also kind of clenching her right foot toes, I think. Can you see it?
I also thought maybe her foot was a little swollen. This is what I was thinking before, but the rheumatologist didn't see anything when she looked at her feet. But I think they were bothering her. They were also red on the soles, which I'm not sure if it was from her climbing on the couch or if they were irritated. This is new, so could that be from the Naproxen? I have no idea.....
Saturday she seemed to be doing pretty well. In the morning, she got sleepy fast and took a 2 hour morning nap. Then she was super energetic and never even took an afternoon nap because she was too playful!
Sunday was an amazing day! Phoebe did not cry when she woke up. YAY, that is so rare! Then, after breakfast, Phoebe WALKED A LOT. This was HUGE. She was laughing and smiley and even though she was walking stiffly, her discomfort must have been pretty low because I have never seen her walk so much so early. She also asked to go outside and put her shoes on! So we went out and she walked some more. Is she not bending either knee to walk though?
We played outside again, two more times that day! We went to the playground twice. To get there, Phoebe tried to tell me she didn't want to ride in her bike. SHE wanted to be the one to push it! But she didn't get very far, but it was cute that she wanted to!
By the afternoon, she was stiffening up again. She also did some crawling, which I'm not sure if it was good or bad. She doesn't usually crawl, so what made it feel like it was a better option to get around and follow me? Usually she will walk or not go anywhere.
In other news, sharing this blog has been helpful, to let more people know what's going on without having to repeat myself or skimp on details. I'm also enjoying hearing everyone's support or suggestions. I'm kind of in information gathering mode. My mom's PT person says put her outside in the morning sun and let her sit in the grass, and to turn off wifi when we go to bed. Several people have suggested making diet changes, though I'd loathe to cut diary and gluten, when Phoebe is already so picky that milk, yogurt, crackers, and fruit are basically all she'll eat. A couple people with arthritis have reached out. One described herself as "the tin woodman" in the mornings. The other was telling me how manageable her pain was with medication and offering lots of encouragement.
It is funny to see how many people I know who are OTs or PTs or in medicine! It was good to hear from everyone and I feel so connected!
Next week we are fully booked.
On Tuesday, I will pick Phoebe up and take her for a TB test, as TB can interact with some of the medications, so you have to be cleared from that. Then I will drive down to Palo Alto to stay in a hotel over night and Jason can meet us there. I just didn't want to drive to our injections Wednesday morning in traffic, with Phoebe being unable to eat or drink because of the anesthesia. We all would be miserable. So Cordelia will sleep over at Meme and Papa's house so that we can be less stressed. I originally booked us a hotel, but then Jason's dad called and said to cancel it, and very kindly used his Points to book us a different room! So grateful to Meme and Papa!
The injections are at 9 at the Lucile Packard Stanford Children's Hospital. I'm feeling more upset about them than the MRI.... for the MRI, I was just sad that it had to happen, but these I'm a little scared because I know it's going to hurt her. :( Hopefully it will be beneficial overall, but I guess for some people it hasn't worked. I hope it will for Phoebe!
Thursday, we go back to get the TB test checked.
Friday we see the pediatric ophthalmologist.
ok i'm falling asleep.... time to go!
No comments:
Post a Comment