Monday, June 21, 2010

'Cuz that's how we roll

Sometimes I wonder if there will ever be a time when our mere presence does not cause chaos.  We drove Emily to Camp Boggy Creek today.  It's about 3.5 hours away from home.  Naturally, I started to get a migraine in my eye just after leaving.  Of course I was driving.  We got forty minutes away from camp when we got a call from her rheumy's office.  The labs that we had drawn Monday and finished on Friday (because they couldn't get enough out of 4 veins on Monday) showed low white counts.  I knew that it would happen, and I even asked the doctor at our last visit if we could just ignore that next time.  She is only on a .2 dose of Methotrexate, and yet it plays havoc with her labs.  I don't want to skip anything right now because her hands are FINALLY looking better.  (I can see knuckles!)  Not just that but she finally has fatty tissue on her arm again.  That's all because of switching back to the injectable MTX.  Fortunately, we had just given her this weeks dose before we left the house this morning, but that news sent them all into a scramble.  The nurse wasn't sure that it would be good to give her Wednesday's dose of Enbrel since she's at camp and she can get sick.  Her white counts only dropped one point, mind you, & low counts run on my side of the family.  Of course our rheumy is on vacation this week, so she's calling the on-call doc that doesn't know Em's history.  They decided to skip the next Enbrel dose, but then said they would talk to the camp on-call to see what she thought.  We got pulled out of line, whisked into the clinic, and had an exam by the doctor within our first ten minutes there!  They told Emily to wear a face mask until she got into her cabin to try to stay germ-free.

We met Dr. Modica today!  I have heard such great things about Dr. Modica, I'd heard how she's more on the aggressive side of treatments, how cool and caring she is.  Right away I felt so comfortable with her.  She was awesome!!!  She asked if we would mind her examining Em, and she asked me MY opinion on skipping the Enbrel. (Dr. N does that, too, but many doctor's don't care.)   She suggested they draw labs on Wednesday before giving her the injection, and said that if her ANC was too low they could do a quick Salumetrol (steroid) IV.  I really appreciated that because of the issues that we've had with her flaring up since April.  Dr. M checked her wrists and said she's not under good control.  She showed us why & it absolutely made sense.  When she starts to pull her wrists down she moves out her elbows to compensate.  She said that she would have her on Remicade, which is what I assumed Dr. N would put her on.  When I asked Dr. N about it he said that it wasn't approved for her.   Last but not least she had a conversation with Emily.  I really appreciate when people treat my little people as people.  Especially Emily.  She has been through so much, she's handled it all so well, & I tell her 98% of the time what is happening.  She explained to Emily what white cells were & why they were important.    I left there feeling really happy that she was in control.  She called me about an hour later as we were getting ready to leave.  She had called the doctor on call to make sure that he was cool with her plan.  These are old school doctor's down here.  He told her that he'd rather only give her a little prednisone.  Seriously???  Salumetrol is a better, more effective steroid.  I admitted that I was a little sad about that, & she said she was, too.  But she also said that she'll take a look at her ANC on Wednesday & go from there, & she'll call me & let me know.  They will all be monitoring her for signs of infection 'cuz she won't tell anyone.  She can't tell the difference between sick & well unless it's really bad like strep or a sinus infection.  Otherwise she doesn't know the difference between H1N1 & just another day.  She doesn't talk about flare ups either, unless she has a "beeping" (throbbing) pain, or if it's severe, like when she can't walk.  It makes me so angry that this is how it has to be, going from medication to medication, hoping that there will be something new to take after her current meds stop working.  Wondering if we'll run out of options someday.  I know that God has a plan, His plan is perfect, & He is in control.  I know that things will not generally go as I would like them to, & I mostly accept that.  I just wish that it didn't involve daily pain for my baby.  She exudes tension.  Just touching her back makes you want to just massage her because she's so tense.  And she's only 8.  He must love her an awful lot to put her through this, but I've known the answer to that for a long time.  She's a gift.

1 comment:

  1. I am happy you got to meet Dr. M though I wish it were under better circumstances. Thinking of you guys and missing you lots!