Last kidney procedure!

I am so excited to report that the stent is now out of the ureter!  As a quick recap for those who have missed it, Emily had kidney stones embedded in her kidney as a result of the steroids over the past three years.  Because they were large, they realized that they were not coming out on their own, so they opted for surgery.  She had one surgery to place the stent to allow the ureter to open enough to be able to see the stones, one procedure where they lasered the stones apart but left the stent to allow drainage, and one last one today to remove the stent.

I am usually the mom that loves everyone and has a hard time finding fault with the people and situations that pop up in the hospital.  I wasn't even really angry when we had to change rooms two weeks ago at midnight- after I had already fallen asleep.  Today I was livid.

We have two hospital choices when it comes to the urologist.  One is a big hospital with a children's hospital attached, and one is a hospital that is only for children.  One would think that the primary children's hospital would be... child friendly, right?  No.  This would be the same hospital that never checked vitals when we were there for her staph infection that was inside of her port.  We usually won't go there, but in this case I had to make the decision in the middle of Kohl's with my calendar being my phone.  I just thought this would have the stent out two days earlier, and it couldn't be that bad, right?  

I knew we were in trouble when we got there and Emily pointed out that we all forgot to numb her port area with lidocaine (Emla) cream.  We discussed it with a nurse who was more worried about getting Emily to pee.  One would think we would work on the Emla first since it needs time to sit, but nope.  She gave her a gown 12 sizes too big and demanded a urine sample- without the little cleaning cloths.  Em was like, "but this won't be a clean catch!"  They put her chair at the opposite end of the hall, and kept knocking to see if she had peed yet.  We finally gave up and went back to the room.  This time there were 3 nurses in the room, none of which had Emla.  I finally texted Daddy to run out to the van.  Oh yeah, did I mention that only 2 people were allowed back there with her?  At our other hospital there was much less room but we could all go back together.  Here they said that we could bring them back in "a little while".  She also gave me the wrong room number so I almost didn't find them again.  She said 9.  They were in 10 with the curtain closed.  Whatever.  One of the three nurses never mumbled a word until it came time to attempt to access the port.  It took two of them, one asking the other to grab supplies, but neither seemed to know what they were doing.  In the end they hurt Em a bit, and then used a seriously oversized bandage on it.

I could be cool with all of that.  Mostly.  My final problems were that they finally allowed Dad & Zach back after two and a half hours back there, only to have them hang out for only five minutes.  The worst part was that they didn't give her anything to help her calm down before leaving the room.  In fact, they didn't even give us the, "last call for hugs" warning.  It was just bars up, say goodbye.  They said we could have a moment in the hall, but they kept the bars up.  She cried all the way down the hall.  You would think they would have handled that a little better, especially knowing that she is medically complicated.   I was so upset about that.  We all decided at that point that we were never going back there.

There were a few bright spots.  The anesthesiologist was very sweet and he took his time, asking excellent questions.  He even pulled a tooth while he was in there!  :)

The other bright spot was our nurse practitioner.  She has RA, and she used to see our first rheumatologist, now known to us simply as, "He Who Shall Not Be Named".  She made a Freudian slip when discussing him that had me cracking up!  He tried to screw her over, too.  It was great to have someone who understood- if only for a few minutes.  Overall though, we will never go back there.  I don't care how new or beautiful an establishment is, or how good the view.  If the quality of care is lacking, it just ain't worth it.

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!

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.