Monday, April 23, 2012

Appointment and long infusion day

We are at our hospital for our long infusion day, staying over until tomorrow.  Today Emily has received 1 hour of steroids, 4-5 hours for Remicade, 4 hours for Rituxan, followed by a 12 hour round of IViG.   In the past she's had the 4 hour IViG, but it works out better when we just stay over.  Last night we stayed at a hotel because we had an early appointment.  It was easier to stay the night before rather than get two kids up at 5 A.M. to be here for 9.  And we are NOT morning people!  We have agreed to just do the longer infusions now so that we stay overnight here.  I made our next appointment for noon.  That gives us time to drop Zach off at school and run over here.  I like that better.

The doctor saw Zach first this time.  We had to draw his labs here since he's on Methotrexate.  MTX use has a slight risk for developing liver problems.  Zach takes the pills orally instead of sub-Q injections, which increases his risk just a little bit more.  I used Emla (lidocaine numbing cream) on one arm first, with a warning that they may not be able to find a vein.  I am so glad that I thought to utter a disclaimer.  Try #1 produced nothing.  Try #2 produced a blown vein.  Try #3 was handed over to a more experienced poker, who got him on the first try.  Phew!  The doctor was very impressed with how his skin looks, as well as his jaw.   We decided not to change anything with him.  We talked about his hands, how it had looked like he had nodules.  I realized today while looking at them that what we were looking at is a bone, but when his hands swell it looks like a nodule.  Good to know.  So his hands have been swollen a LOT.  Maybe that will change now.  He's only had about 2 complete months on Enbrel.

Emily is always a little more complicated.  Her ankles have been hurting her, but he didn't feel any active arthritis in the really bad one.  Hmmm.  Her back has been bugging her for a long time, too.  When I asked her about her pain level (stupid pain scale 1-10) she said, "that thing doesn't work".  LOL!  My big concern with her right now has been her urine.  I don't think I posted about this before, though I know I mentioned it on my boards. 

About 2 weeks ago she told me that her urine was white.  We kind of "hmmmm"d about it.  I meant to ask the pediatrician about it but at the time I was more worried about her sinus infection.  Well, on Wednesday after school she told me that her urine had blood in it.  That got my attention.  I really didn't know what to do about it.  I couldn't take the day off to go to the doctor's.  I ended up calling the hospital because in the end I thought that it may have something to do with her Mixed Connective Tissue Disease.  She's at a much, much higher risk for kidney problems than healthy people. Kidney failure is a common symptom of MCTD.   We ended up having a urine sample run that day, with the results going to our rheumies.  They had figured it may be a urinary tract infection.  Apparently it isn't an infection or a kidney problem.  They think it's a virus.  He said that if it were a rheumatic kidney problem there would be red cells, increased white blood cells, and something else that I can't think of at the moment, all showing in her urine.  They didn't show, though there was blood in the sample. So the good news is that it doesn't appear to be a kidney problem!  I do believe that this is just another sign of disease progression, though.  It seems like every year the disease gets a little worse, and she gets a little more sick.  She's still doing better than some of our JA kids.  There are several kids that have been forced to go on full-time hospital homebound.  Our doc noted that she looks very pale today, but she seems to be doing ok.  We just filled out her hospital homebound paperwork just in case the home schooling doesn't work out.  I'm trying my best to be prepared.  We also talked briefly about her Raynaud's acting up.  It's not nearly as often as it was before Procardia but the activity has increased.  We're keeping an eye on it.

 She had a meltdown out of the blue.  I'm guessing it's the steroids.  She gets 1000 mgs of SoluMedrol before her other meds.   She was looking at the movie list, trying to pick out movie number 3, when she got upset because she couldn't find Little Mermaid on the list.  I asked to see the list, and promptly found her movie.  She asked for the list back, but still couldn't find it on the list.  Next thing I know she's wailing like it's the end of the world.  And yelling at her brother.  Poor boy has had a really rough day and she's yelling at him.  I know it's the steroids.  It's just surprising because she doesn't normally get upset. She's feeling much better now that she's watching her movie.  

So tonight should be interesting.  Here overnight with two kids.  Usually there's either one sleep chair or one little fold out couch in the room.  Either we'll have to steal a chair from another room or Zach & I will have to share a sleeping area.  That should be fun.  :/  But I'd rather do the longer IViG.  Less chance of reaction that way.  Here's to hoping that the we get some sleep tonight!!!


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