Friday, July 26, 2013

Stone Update

She had aquatic therapy twice this week so far.  Monday's was not so great.  She promised me that she would give it a chance, but she wouldn't cooperate at all.  On Wednesday it went well!  I cannot say for sure that she enjoyed it, but she at least cooperated.  She looked like she was having fun.  Part of the reason that she did so well, I think, was Tuesday's Biofeedback session.  What a wonderful tool!  Again she was hooked up to the little EKG probes, and again we could see her tension visibly on screen.  The cool part about that was that when she was upset about something we could see it shoot up to like 18, but once she started deep breathing and listening to her relaxation exercise it dropped down to about a 4.  As Ginny pointed out, "see, Emily?  You have the power to relax yourself.  You don't need anyone else to do it for you".  How cool is that?  We discussed aquatic therapy quite a bit that day.  I was very pleased that she did so well the next day.

Yesterday was the kidney stone procedure.  Of course, it wouldn't be our bumpy road if anything worked as intended!  The doctor called me on Tuesday as we were walking into a hospital for Emily's biofeedback to tell me that we may not proceed with the lithotripsy (shockwave of the stones).  I really had no clue what was planned, but we are pretty used to this type of thing.  Things always work out for the best whether we stress or not, so I chose not to stress.  He called me the next day to say that they had a new plan, but it would likely mean two different procedures.  He had initially said that the lithotripsy would require two procedures also, so it wasn't much different to me in that respect.  He told us that he conferred with specialists all over the world to determine the best course of action for our special girl.

They put a stent inside of her urine tube to try to make it bigger.  He told me that it was likely they would not be able to get the ureter opened up enough to grab the stones today.  Sure enough, he was right.  He said that she would have to have the stent in place for 1-2 weeks.  It should dilate the tube enough to pull them out later.  Right now she hurts but not too badly.  They gave her pain medicine, an antibiotic, a medicine to help with bladder spasm, and another med that I cannot recall right now.  The first few hours were awful!  She felt so terrible, and she was in so much pain.  Right now she seems to be her normal self.  It's probably somewhat the pain meds, but it is reassuring.

The only beautiful thing about this is that aside from my working this weekend, we have no appointments planned until 2 weeks from now.  It really just depends on when we go back for the second procedure now.  Thank you so much for your prayers and love.  We felt it, it helped me to be calm and collected.  Emily was still a bit of a mess, but still much better than most kids would likely be.  Thank you for your support.  It is very appreciated!!!

The next post will be a how-not-to-die-at-the-hospital type of post, I think.  I have spent a lot of time comparing how I was ten years ago to now.  I have learned so much, become so organized which is really weird for me.  I feel like I need to share it.  That is coming!  Stay tuned!

Friday, July 19, 2013

Balancing Act

This past summer has been our biggest trial to date.  It has been a series of errors, really.  It started with my thinking that Remicade wasn't helping as much last summer.  Switching her seemed like the right idea at the time because I always had to base my decisions off of actions before that.  She is a child that doesn't like change, so I expected resistance.  I wasn't really expecting Emily to not respond to the next two medications.  Just like I didn't think that taking a break from physical therapy would be too bad.  Well.....  I guess this goes to show that Mom isn't always right.

As some of you may know, I have always known what is wrong with my children.  I know sometimes before they are fully sick that they are sick and with what.  I pretty much understood everything that was happening to Emily, and I was able to anticipate things.  Sometimes I could even tell you exactly what hurt.  And then this year came along and that all flew out the window.  I know that there are several things at play here- for one thing, puberty is rearing its ugly head slowly.  That alone can change all of the games.  I think that some of it is because of the kidney stones, and some from pain amplification.  I think the pain amplification started because of the therapy break and the med changes.  But I think we are on the right path.

This summer has been insane with appointments, but this week alone has been very trying.  We had our hospital medicine overnight appointment on Monday and Tuesday.  No really new changes, though we did have the worst nurse EVER.  I always pretty much love everybody and tend to overlook a lot, but this lady literally asked my 11 yr old to walk her through how to de-access her port.  At first I thought she was kidding.  I was in the middle of saying, "So, if you don't know how to do this why don't you leave it for someone that does?" when she got it out.  I almost died.  It was horrible.  We made it home safely at least.

Wednesday brought us to another out of town hospital for Endocrinology and Nephrology.  We started out so early, but our GPS totally messed us up.  We got there 30 minutes late, but they still saw her.  I did call to let them know we would be late.  I pre-paid for tolls expecting more than last time because we planned on taking the full toll road, but the stupid GPS never even put us close to a toll road.  At all.  That was stressful.  A 2 hour drive turned into 3.5.  Endo is ordering growth charts from her other doctors.  She did a bone age scan.  Em's hand looks about right for an 8-9 year old.  She wants us to do a plethora of blood work.  We are waiting until she has to be accessed next for it as it causes her so much anxiety.  Hey, maybe when she has her kidney stones blasted out!  We shall see.  She said that there is a growth problem marked by either a missing or a mutated X chromosome.  It mostly affects girls, and it can cause problems like arthritis, so she ordered the chromosome test.  I was worried a little about Zach, too because his feet bother him so much.  Since he has PsA, I dig through those medical papers a lot also.  I asked her about this article.   She was very surprised that it discussed type 2 and not type 1, but either way she didn't think that we had to worry about Zach even with the family prevalence.

Nephrology discussed with us how to avoid kidney stones in the future.  In truth, it may be difficult to avoid because they were likely caused by her Prednisone, but drinking more water and eating less salt will be helpful.  She drinks water, she almost always has a bottle with her, but she doesn't drink enough.  They aren't usually allowed soda, either.  She just doesn't drink enough period.  And she craves salt.  She craves popcorn, potato chips, Ramen noodles.  I hadn't realized it before but the little packets of flavoring that come with those noodles is 33% sodium.  OUCH!  Anyway, about 8 weeks after her second procedure he wants to do a 24 hour urine collection, and then see her back.  He also wants us to collect pieces of stone for him to examine.

Before we saw Nephrology I stopped by to pick up copies of the CT scan and report.  Of course I come home and research it all.   Her stones are HUGE.  One is 5X5 mms and one is 8X10 mms.  WOW!!!  That is crazy.  There is no way they would pass on their own.  I also read on the report that she has "gaseous distention of the colon" and a few other things that looked scary.  It all seems to point back to 2 things- her esophagus is still not meeting at her stomach properly, which causes GI problems, and her stomach muscles are still weak, which are causing bathroom issues.  I think once we get those stones out and strengthen those muscles she will feel a lot better.  Her first procedure is scheduled for next Thursday, the 25th.

Thursday was her first appointment at a place that offers aquatic therapy.  For a normal child this would be happy news.  For a girl with high anxieties this was like walking the plank.  She was NOT happy, so she kind of took it out on the poor therapist.  She tried every trick to engage her, but Em wasn't having it.  She was so worried about being in the pool that she couldn't see the happy side.  Today was just an evaluation, but we start regular sessions on Monday.

We also started Biofeedback Thursday.  We met Ginny, probably one of the coolest ladies that I have met this year.  She was really chillin', but she also really listened to us.  She asked Emily a lot of questions, and they talked honestly.  It was lovely.  They talked about sleep.  Emily said that she reads to go to sleep every night because she hurts so much once she lays down to fall asleep.  Reading takes her mind off of the pain.  Also, she said the pain wakes her.  (Sigh).  At least now I know.  We have been asking her about that forever.  Ginny will be able to teach her techniques that she can use to fall asleep, to help herself relax, to help manage her pain.  How cool, right?  But it gets better.  She placed electrodes on Em's main tension points around the head, jaw, neck and shoulders, and checked to see how stressed she was.  She said that a normal person without chronic pain will be about a 2 on everything.  Em had almost all of them 6+.  She had one 13.5.  I forget what her jaw was but it was really high.  This is likely the cause of her migraines, headaches and jaw pain. So, we made our next 6 appointments with her.  The week after our last appointment with her we will finally be seeing a good psychologist.  Since the one that we interviewed for her seemed more overwhelmed by her situation than we are, we thought we would try again to make an appointment with the one who only handles kids with chronic pain.  Between these 2 people, if she is still having headaches, Ginny recommended a headache specialist!  I am hoping the Biofeedback will kind of heal that, but one day at a time.  It will give her great coping tools that she can use for the rest of her life.  And she told me that our pediatrician that recommended her called her yesterday to see if we had been to see her yet.  So sweet!  I will text our pedi tomorrow to let her know.  We have some of the best doctors!

All in all, it was a very stressful week but also a very good one.  I feel like we are on the right path, like we have the right tools in place.  In a stressful time a couple of weeks ago I was trying to figure out how I would juggle all of this.  I figured that if I did aquatic therapy after my classes are out on Mondays and Wednesdays and perhaps any Friday that we were in town then we could do biofeedback and psychiatry on Tuesday's, and our out of town appointments on Thursday's.  So far that is working out brilliantly!  I didn't actually expect it to work because it is a lot to ask of other's but the pieces are just falling into place (praise The Lord!!!)  Hopefully this will help a lot.

Wednesday, July 3, 2013

Anyone have a cheap helicopter for sale?

Looking back on the past few years, I have NO idea how I worked full-time.  This year has been so hectic, and we have added so many new specialists.  The past few months have been extremely difficult and overwhelming.

Zachary is doing better than Emily still, but we have noticed... things.  For instance, now that I have "kicked the kids out of the house" (to play), he complains more about pain from behind his knees.  His rheumies hadn't mentioned anything before about enthesitis-related, but with Psoriatic Arthritis it does make sense.  His ankle pain comes and goes, but lately it is more knees than anything.  Last month when he saw our rheumies, we were talking about a friend of his who has had a lot more disease activity.  I pointed out that Zach's case is relatively mild, but the response that I got back was, "PsA is a lot harder to treat 10-15 years out.  PsA kids tend to be the hardest to treat and control down the road".  Great.  My heart sank.  Fortunately, we live day-by-day!  I am not going to get caught in that trap, and I won't let the kids get caught, either.  I'm just happy that he is outside playing.  Emily has been playing outside too, though she doesn't last as long.  I am sure that she has been depressed, but hopefully the plan we have will address that and correct it quickly.

I have always been the mom that knows what is happening.  It has been very rare that I was wrong- but the past few months I have felt so out of the loop, like I'm part of a guessing game.  I think we are on the verge of getting that situated, but still it has been hard on me.  Being this hard on me, I can't imagine how my little people cope.  We did switch back to Remicade, which definitely seems to be helping.  She has gone from having mostly 7-9 on the pain scale days to 4-5.

I think I am finally figuring out Emily again.  Ok, this is a lot.  So, she does have kidney stones, which we feel are definitely making life more difficult.  However, what makes everything tougher is that she has "Pain Amplification Syndrome".  I have mentioned before that it was brought to our attention that when one isn't growing properly, their cells aren't reproducing the way they should, which makes the body hold pain in.   After a friend mentioned it, I started suggesting it to different doctors.  They all agree.  That said, we see endocrinology on July 17th.  I am truly pinning all of my hopes here.  As KM said, in their case once growth hormone was added, the first month was horrible but after that everything settled down.  Pain came down, growth started; the best part is that the hormone is a natural hormone, and for them it helped them to decrease some and eliminate other medicines.  I would LOVE that!  I am quite sure Emily would, too.  I am also hoping that this will help her headaches.  Neuro-opthamology didn't see any reasons for her headaches, which I now think may be a combination of hormones (pre-pubescent) and the pain amplification.  We are scheduled to see nephrology the same day we see endo.  The very next week Em has her first psychology appointment, and the day after that she has a procedure to blast her kidney stones out by sonic waves.  They will sedate her because a tube needs to be inserted up into her kidney.  They tell me they will repeat this procedure on another day because sometimes they stones are stubborn and either won't break up or will break up but won't leave the kidney.  We really hope that having these little nasties gone will help her pain level go down a bit.

Another new specialist that we have added is pain management.  That doctor wants her to try aquatic therapy three times a week, as well as biofeedback.  She says that these will both help the amplified pain syndrome.  I'm just not sure how to fit these in.   We have found the aquatic therapy close by, but I still haven't spoken to a provider for biofeedback.  Right now it looks as though it may be an hour south for BF, close to urology.  Comparatively speaking that is not bad.  Rheumatology, who handles pulminology and GI are all two & a half hours north.  Pain management, endocrinology and nephrology are all 2.5 hours east.  With all of these appointments, school work for the kids, and my own schooling come fall, how the heck am I going to swing aquatic therapy three times a week?  I'm not sure, but I know that we will.  If it will really help her, we will do it.

The pain management doctor prescribed pain patches for her.  Just lidocaine, but it seemed to help her knees a bit.  I love that she chose something that didn't require another pill.  I am not familiar with biofeedback, but from what I understand, it involves teaching the child how to cope and deal with their situation using relaxation techniques and monitoring bodily signals like blood pressure and pulse oxygen.  It sounds really cool!  Our advocate has suggested waiting to see what psychology said.  Our psychologist was thrilled that we found a doctor who believes in hypnosis and biofeedback.  I think psychology is a little overwhelmed by our situation.  We had a good laugh over that tonight.  She was pretty amazed at what we are dealing with.  Like I told her, one day at a time and we stay close.  None of us could do it alone.  We need to take this all on as a family.  It would just be easier if we had a helicopter.  Or two.  Or a fleet.

Last thing- Camp starts Saturday for Emily!  She is SOOOOO excited!!!  In truth, for the first time I am glad for her to go to get her out of here, to get a break.  She is so sweet and wonderful, but it seems like every day we are at some appointment.  That will be one week where we are guaranteed not to have to go to an appointment for her.  The down side is that we had stopped Mobic (an NSAID) a couple of weeks ago because it was starting to hurt her stomach.  Since we were stopping Mobic we decided we would drop Carafate (similar to Xantac, it coats the stomach).  Today we ended up back at the pediatrician's office, thinking that her antibiotic wasn't working for her sinusitis.  It turns out that her sinusitis is gone, but her reflux is acting up again.  The Carafate is such a large pill.  I cut it in half for her but it is still so big.  She really hates taking it, and we were so excited to drop basically three pills a day.  Now it's back on the Carafate.  I'm not sure how she handles it, but she is pretty amazing.  I am trying to get us on a wheat-free, gluten-free (or very reduced) diet.  It is very difficult when you have children who are as picky and stubborn as Emily.  She literally won't eat if we don't give her one of her staple foods, but we are learning how to find healthier options.  For instance, I could buy all kinds of fresh fruit but it will sit in my fridge and rot.  I discovered an organic fruit pouch (no GMO!) that my kids have sucked down.  It's actual fruit- not juice.  If that is the only way I can get them to eat fruit, I will do it.  Baby steps.

I will keep y'all updated as we determine new things.  It has just been tough.  Thank you for reading and supporting us.  As always, prayers, blessings, whatever you have to offer, we will always gladly accept and  appreciate fully.