Monday, September 26, 2011

Port placement is Tuesday

As we get closer and closer to Tuesday, I find myself getting more & more nervous.  I'm sure that this port will be the answer to our prayers, but I'm still dreading the procedure.  We had a month long wait to get in to see the surgeon for the consult.  Then, her infusion was scheduled for the next week along with a doctor appointment, but they didn't have an opening for the surgery for that day, so we had to wait another 5 weeks until her next infusion.  That really figured because in August we were there every week, and in July we were up there twice.  This was the first time in a while that we had a few week break.  Unfortunately, that break allowed her anxiety to build and build.  Emily has slept in our room almost every night for the past month.  And yet, when I asked her if she wanted to cancel the procedure, she said no.  She realizes the benefits outweigh the risk.

It amazes me how strong she is.  The things that other kids couldn't handle she breezes through.  She is so logical, so hard working, so brave.  Her diseases may be hell on her, but they have helped to shape her into an amazing little girl that is wise beyond her years.  It's sad in some ways; knowing that her life is shaped around pain, for one.  She's had to make some hard choices.  I'm so proud of her.

I'm feeling very conflicted right now.  On the one hand, I'm so thrilled that port is being placed.  Especially after her last appointment where she hit and kicked the nurses for a while.  I was mortified.  I couldn't get her to stop, and they were all so sweet and patient.  It makes me angry that a surgical implant like this should be a blessing, a great thing for us.  How wrong!!!  No little kid should have to go through this, and yet she wants to do it.  She has really grown up this year.

We've been trying to think of a Christian song that talks about fear.  She told me that she wished she could find one that could help her, but my mind is over-stressed and drawing a blank.  Anyone have any suggestions?  I may still have time to download some.  Tomorrow I will have to be in bed by 8 or 9 P.M.  We have to be at the hospital at 7 A.M.  We live about 2.5 hours away.  I am sooo not looking forward to this.

On a different note, we're still working on getting my son figured out.  Our pedi wrote us a prescription to take him for a panoramic, but the radiology place by us no longer has the panoramic.  They suggest a CT scan, but I think I would prefer an MRI.  I know that's what the TMJ specialist in Birmingham suggests.  I'm going to call them tomorrow (if I remember) and see if they can either give us a different prescription or refer us to a TMJ specialist locally.  I've run into roadblocks at every turn trying to get him checked out.  Also, our pedi didn't give Kevin a prescription for labwork, but they must have read my note after Kevin left them.  I got a call a few hours later saying that I can pick up the paper copy anytime.  I had noted that, at the session in the conference, the Alabama doctor said that 83% of  JA children have arthritis in their jaw, but they don't know it.  It's painless and silent.  He also said that most children's start in their jaw, but it goes undiagnosed.  I'm still praying that we don't need to worry about that.  I've spoken with several people that have psoriasis and TMJ, so hopefully that's all it is.  Anyway, I also requested that *IF* they ordered labs, to please run the RF panel, the inflammatory panel, and the HLA-B tests.  Those point specifically to spondylarthropathies, which run with psoriatic arthritis.  Hopefully, all will be negative.  I don't need another baby in pain, though at least then maybe we could get his psoriasis under control.  It's very stubborn!

Needless to say, I'm having a rough week.  He's cool with this.  It doesn't really bother him, but I'm ticked off that I don't have any answers yet.  I hate roadblocks.  I know- I have time to be patient.  I'm working on it.  Really.  And I'm holding up.  I'm really used to this stress cycle.  When things are quiet and going well, I'm very edgy and nervous.  I think sometimes that most people don't ever have to deal with anything like this.  They can be blissfully unaware that 300,000  kids are out there suffering silently.  I miss being ignorant.  Despite all of the blessings that we've had grace our lives since Em's diagnosis, I would gladly trade it all for 3 healthy, normal children.  But then again, I bet that our house wouldn't be so happy and loving, we wouldn't count our blessings the way we do now, or try to see the bright side of everything, would we?  While it doesn't define our lives, it's certainly an integral part. Life is what you make it.


  1. What a brave family you are. I'm sure you hear that a lot, sorry to sound so generic. I got my port back in March and it has been a gift. Especially after a recent hospital stay. When I get my infusions every eight weeks it's like I forget I'm hooked up. I'm sure you must be worried sick, but the procedure to put it in was easy and painless. My biggest complaint was been waiting to shower. I have had fewer infections in my hands as well. I don't know if it's because of no longer being stuck then re-stuck, but my hands just feel better because it was the place that had the best veins- well, until they were no longer usable. Best to you and you family. I will be thinking of you on Tuesday:-)

  2. Thank you so much! That is good to know. I'm 100% sure that this is the best idea. She hates it in her hands, too.

    How long was it for you before you were able to shower? I can't wait to get her in the shower. She's a mess from today's humidity combined with laying around so much the last couple of days.