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Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Tuesday, January 5, 2010

Let's call this the good, the bad and the ugly

Last Wednesday, December 30th, Jenna went to Duke for her follow up appointments with rheumatology, opthomalogy and labs. Opthamology was up first on the agenda. I didn't have good feelings going into this appointment. She'd been complaining of pain, light sensitivity and "feeling things" in her eyes. She did SUPER good letting them check her pressures. SO proud. Best she has done yet. Pressures are good at 17 each eye. Then Dr. Wallace's fellow came in to take a look. I held my breath and prayed. She said everything looks the same as last time just a trace cell in one eye, other is clear. PHEW! What a relief! I asked her why Jenna would be complaining of pain and photophobia. She said Jenna has a bit of a "dry spot"? Okay. I'll take it. Then Dr. Wallace came in and checked her out. He says, "No, things are not at all the same." WHAT?! He says his fellow is wrong and he goes to get her to take another look. They come back in ad he tells her to make some adjustments to the slit lamp. Then she sees it too. Not a terrible flare, 10 cells in each eye, but considering that just one month before she was quiet. It is indeed bad news. We're trying a different drop since pred forte makes her pressures sky rocket. She is doing Lotemax 4x daily and will see him again in one month. So that was the "bad".
Next up is rheumatology. This always makes me nervous. I don't know really why, just does. So again I hold my breath and pray. The doctor comes in and looks Jenna all over, moves her joints all around. They are VERY thorough and for that I am so thankful. After looking her all over the doctor says her joints all look GREAT! Excellent range of motion and flexibility, just a tiny bit of fluid on her right knee, nothing to be concerned about. YES! Thank you God! What a relief. That is the "good".So then we talk about her meds. They have been wanting to tweak them since her first visit in August but they wanted her eyes clear, then she got sick and now her eyes are flared again. We are all in agreement that we can't keep waiting. AMEN! While her joints seem to be responding well to her current meds (Enbrel and MTX) her eyes obviously aren't. So the question asked of me was, "Do you want to change the dose of the MTX and make it sub cu and wait 3 months to see if that works and keep her on Enbrel? Or, make the switch NOW from Enbrel to Humira along with changing the MTX?" I told them I am all done with waiting. If they are on board with switching everything now then so am I. They agreed. No sense in waiting anymore. Although Humira injections are painful, if they work then we'll cope somehow.
Next up was labs. Jenna HATES labs. I try to remain calm because she isn't. Not easy to do knowing how she reacted last time. Took three of us to hold her down. The worst part is the "noodle" on her arm. She does MUCH better if that isn't used. We had phlebs in Maine that could do a draw without it but here they insist they need it. Thankfully it's been chilly here so Jenna was wearing a long sleeved top. She put the "noodle" over her shirt sleeve ;o) Didn't pull the skin so much. My big, brave girl cried her heart out but she didn't move an inch and she didn't fight. Again, SO proud of her!! More "good"! Poor pumpkin slept nearly the whole two hour drive home. She did so well with everything.
Now we move onto the "ugly". When we got home that night Larry headed out to the Walmart pharmacy with all her new scrips. I seriously do NOT know WHY we keep using them! They tell Larry they can have them all filled, ALL filled in 45 minutes. I tell him to just come home, he can go back in the morning for them. So he goes back in the morning, and comes home with just her eye drops, Methotrexate and syringes. No Humira or lidocaine. They said they are waiting to hear back from the doctors office with a question on dosage. You didn't know this last night?? So I check her account online later that afternoon and I see the Humira has been filled. Larry goes back AGAIN and comes home AGAIN empty handed. Are you kidding me?! They tell him they don't have it. They need to order it. Seriously?? You didn't know this last night? Or this morning? And why is it filled on her account? Who know. Certainly not them. They tell us they'll have it Monday. Only one day past "shot day". Not too bad. So Monday afternoon we go back. The order is in but not sorted. Uh huh...we'll come back. We have nothing else to do really. So Larry goes back a few hours later. He comes through the door...EMPTY HANDED. WHAT NOW?!! Apparently she is no longer covered by Medicaid. Really?? They wanted $2,000 for her scrips. Gee...thanks DSS for notifying us! It's now 4:30. DSS closes at 5. Good luck getting anyone to answer the phone. He managed to connect with two actual human beings. Unfortunately, they couldn't help him. Awesome. So he has been sitting in their waiting room since before 9 this morning waiting to speak to someone to find out what in the heck is going on. We are really hoping someone has made a mistake and she will be reinstated immediately. If not...I have no idea. We have no other options.


Erika said...

Just a comment on just one part of the sitch.... interesting that one turn of the slit lamp & "oopsie! didnt see THAT" - isnt that NUTS?!? That's really good for us to know... because especially if an ophthalmologist has never SEEN uveitis.... FUTURE PARENTS OF JRA CHILDREN: Ask your ophthalmologist if they have ever SEEN uveitis, because some have read about it, but have never diagnosed it & it would be awful to be missing it if they dont know what they are looking for.

xo xo Amy!

Amy Cunningham said...

Oh...that's a good point Erika. I can't remember what he told her to do to the slit lamp but as soon as she did it she said, " I see...oh yeah." That's not good huh? Guess it's a good thing Dr. Wallace caught it!