EMG at PCMC on Feb 25, 2013

Since Scott went with Russell to do his EMG, I don't know as many details as I normally do.  This is so totally fine with me.  I am so grateful that he went with Russell, so I got to skip alot of the stress of that day simply by not being present. 
So here's what I know, They got there at about 9:30am, and went back to be admitted into same-day surgery.  Scott showed them the letter from the anesthesiologist showing them what type of anesthesia to do.  At first they didn't want to do it, because they said it would be harder on him and he wouldn't wake up as happy as he would with a gas mask, but Scott pushed for it anyway and they did it (Yea Scott!) Scott knew about the dehydration/high heart rate problems we'd had a few days before, so he made sure Russell drank a lot.  There were NO problems with his heart rate that day.  They had a long consultation with the Dr to begin with.  She asked lots of questions about Russell's history and abilities.  Scott did an awesome job answering, I'm sure.  He said she fired questions at him faster than he could answer sometimes.  Almost gives me anxiety just hearing that.  Again so glad I was not there.

They stuck needles in his arms and legs and trunk, and tested the electromagnetic impluses.  Basically they tested his nervous system.  They also did some blood tests.  They wanted to do a spinal tap as part of the test, but due to the cast they couldn't access his spine.  Apparently the Dr (Dr. Sakonju) was not happy about that, and expressed this 5 or 6 times to Scott.  According to Shriner's hospital, they were supposed to already know that he had his cast on and that it wouldn't be a problem for any of the tests.  So now they want to do a spinal tap later, sometime when he doesn't have his cast on.  Anyway, then he came out of anesthesia in record time, and was really happy.  He ate lots of fishies and apple juice while waiting for the kids and I to come and pick them up. 

All of the tests they did came back negative.  That's really awesome.  That means that although we still do not know what's going on, it's not anything TOO terrible.  Makes me very happy. 

She did agree with Dr. Kerr at Shriner's hospital, that he does have SOMETHING.  There's a few key indicators pointing to it.  But I have a really calm peaceful feeling about it.  I know he'll be ok, no matter what.

Details of Russell's fourth cast on Feb 21, 2013

So…Russell has had his new and fourth cast on now for two weeks.  He’s doing pretty good.  He did really well that day.  My wonderful mother came with me again, and I think I’m learning each time how to deal with it better.  It honestly gets easier every time.  It doesn’t seem as stressful as it used to-although it’s still stressful-probably just because we’ve gone through it five times now (one time he didn’t get a new cast on).  This time, he wasn’t first, so we didn’t have to be there until 8:30am.  That was really nice to get more sleep this time.  He’s supposed to drink until we arrive there, but I wasn’t as vigilant as I normally am about it.  By the time we arrived at Shriner’s, he’d only drunk probably a few tablespoons of apple juice. (This will be of significance later in the story)

They got us right in, got Russell all prepped, (we found out he’d gained FOUR pounds since October, so he’s up to 24 lbs. J), in a great amount of time.  I told them he hadn’t drank very much in the car, but they didn’t seem worried about that at all. They gave him his happy medicine, versed, covered his entire body with gauze as prep for casting,  and were literally just about to take him back into surgery…when we found out that they were just starting to re-do the cast on the kid right before Russell because there were some problems with it.  We would have a 45 min wait, they said.  This concerned me, because I was worried that Russell would come “out” of the medicine they’d just given him before he was put under anesthesia, and last time that happened he was very very delusional and angry for HOURS.  So they told me to push the call button if that started happening, and they’d give him some more medicine so he wouldn’t come “out” until he was under anesthesia.  But we were so blessed.  He just stayed super happy and loopy the whole time, thought EVERYTHING was so funny.  I love versed.

They came back for him right on time.  The casting went really well.  They did the new TVN anesthesia, just like they did last time, and he came out of anesthesia SO WELL!  It was nice to have my little boy “back” with me so quickly.  He was calm, fairly happy (like waking up from a nap).  He wasn’t nearly as mad as I thought he’d be with his cast back on.  After sitting in my mom’s lap, and mine off and on for a while, he said he wanted to go for a walk in the halls.  We couldn’t keep up with him!  I still can’t believe how quickly he adjusted to this cast.  The only scary thing that happened was that his heart rate kept going above 170 bts/min.  The alarm originally kept going off every time it went above 150, but since it just was going nonstop, they changed it to “only” go off when it went above 160.  The nurses were confused at first about this because he was so calm.  When the monitor would go off, they’d come in expecting him to be throwing a tantrum and be really angry, but he’d be just sitting there so sedately.  So then they decided to do a blood test and an EKG to check for heart problems.  I was so surprised at this, because I had such a calm feeling that he was fine.  Even when they said this, I just kept feeling that I really wanted to go home.  But since I wasn’t sure if this was my own personal feelings or inspiration, I agreed to it.  Not that they waited for me to agree, ha ha.  They were a lot more concerned that either my mom or I was.  However, when they tried to do the EKG, they couldn’t get the tabs on him, because of the placement of his cast.  It covered all the spots they normally put their tabs.  They tried, but couldn’t get a reading.  So they decided to do the blood test first.  The blood test came back totally normal, so they decided not to do the EKG.  Thank goodness.  So it turns out, that his high heart rate was attributed to being DEHYDRATED. I should have made him drink more before we got in.  Lesson learned.

But because of all the concerns about his heart, we were there until 5 PM!! That was the awful part of the day.  Just how long it was.  But I am VERY grateful there is nothing wrong with his heart.

In other good news, Dr. D'Astous said that the next time we come in, he'll be fitted for a brace!! His curve is down to 8* with 0* RVAD in this cast.  SO AWESOME!  Now remember that wording in that first sentence of this paragraph...it came back to haunt us.  The next morning, I asked him about it again, thinking it was too good to be true that he was in his last cast, and he reitterated what he'd previously said.  I went home thinking that that meant he was currently in his last cast.  I told everyone that, and I even put it on facebook.  I mean, that's exciting news! However, Scott and I, after we got home to Idaho, kept feeling like we should push for another cast.  Just one more, to see if we can get it down to 0* before we go to bracing.  Bracing doesn't seem to be effective at decreasing the curve, just holding it.  So yesterday, I called to tell them that's what we want to do, and found out that's the current plan.  I just didn't understand how it worked.  Next time we go in (May 16th)  Russell will be re-casted, put into his last cast, AND they will do the mold for the brace.  That way, when we get that LAST (5th) cast removed, he'll go directly into his brace that he was already fitted for.  I just hadn't understood the wording of Dr. D'Astous before.  This still makes me laugh.  Because I am SO happy that Scott and I decided that's what we wanted BEFORE we went there and got the "bad" news on May 16th!