Wednesday, August 29, 2018

Surviving the Storm and a Speech Explosion

I want to thank everyone for the support that I received with my last post.  It is hard to be so open and honest, but I have learned that many people have felt the same way and many people have reached out to me offering support.  When I write these posts, it is for 2 purposes - to help me process my thoughts and to also let other people know that they are not alone.  Since the post, I have had actual adult conversations that were not with my husband, mom, or doctors.  So wooohooo!

We are surviving over here.  School has started and Turkey Bear managed to miss the first day.  Because of her psych issues, she lost it at cardiology on August 1st.  The EKG was a catastrophe so we had to give up.  The echo.  Well she was really excited about the echo - just hopped right up on the table and yanked her gown open.  I kept showing her pictures of her doing the renal ultrasound and said it is like that, but on her heart.  She would say “yeah yeah” and point to her heart.  Yeah . . . so when the tech put the wand on her chest, she got angry.  Kicking.  Screaming.  Yanking the wand to her abdomen because the tech was “doing it wrong”.  My little juvenile delinquent’s behavior led to ordering the echo and a CT scan angiogram (a fancy way of saying looking at blood vessels via CT scan) under sedation.  Of course the only day they could do it was the first day of school.  She’s totally starting off the school year on the right foot.





Ellie "helping" with her renal ultrasound in May.


I believe it was her 18th or 19th time under sedation/anesthesia and sadly they remember us.  Although, mainly because I stand there and say things like “she’ll need and I&O cath due to urinary retention” and  “could you give her that propofol again before you pull her out of anesthesia because she has emergence delirum?” as I hand them a word document detailing medications, dosages, why on them, and who prescribes them.  Apparently, most parents don’t do that? Just in case, y’all are wondering, emergence delirium is when the patient comes out confused after anesthesia.  Bear is a “tad” okay, very combative afterwards.  She has no qualms about ripping her IV out with her teeth (yes, through the tape) while kicking me from her bed with nearly enough form to knock me over.  Procedure and surgery days are so much fun!

I feel like in the top 2 pics that it looks like she just walked in her room drunk and collapsed on the bed.


Happy news!  Ellie has officially been discharged from cardiology!  Happy dance.  Happy dance.  Yay!  We dropped a specialist!  

Ellie’s heart is structurally normal.  We were looking at her aorta to see if it was narrowed and that was the cause of her high blood pressure [BP] in her left arm.  It isn’t because her aorta is normal!  Her left ventricle (the left lower chamber of her heart) has normal thickness.  With high BP, the heart has to work very hard to pump and the left ventricular wall gets thick.  She does not have this! Ellie does have a right aberrant subclavian artery that is looping around the back of her esophagus causing some narrowing.  The cardiologist says she will not move the artery unless she has lots of choking on solid food episodes and that has only happened a few times where she had to make herself throw up.  Anyway, we still don’t know what is causing her high BP.


Normal position of arteries branching off the aorta of the heart.



Ellie's arteries


Of course this means we get to go to nephrology every 2 weeks until we get her BP normal.  She is one Norvasc since the clonidine caused aggression and we have since gone up on the dose.  It seems to be working.  At her well check, we will do blood work that looks at kidney function.  I am pretty sure The Bear is fine from a kidney stand point.  Who wants to bet that we will never find the reason for her high BP?  Those who say we will get to watch Ellie for an entire week while I run off to a deserted island.  

Now in other, fun exciting news, Ellie Bear is really trying to talk.  





When I first heard her say “bye y’all”, we were leaving the drop in day care and I had no idea what she was saying.  It wasn’t until I put her in the booster seat that I figured it out.  The little turkey is a true Texan.






Someone loves swimming!







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1 comment:

  1. I've lost track of almost everyone over the last couple years and am sorry I didn't know what was going on w/Ellie. Sending you all my love. If you ever make it back to STL I'll treat you to a mom's day. xoxo

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