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! 

Going to Utah tomorrow

I can't believe how fast the time has gone!! We leave for Utah tomorrow, he gets his cast on this Thursday, and we have the EMG next Monday!  And thanks to everyone's prayers, Russell has been healthy for about 3 weeks now! Not even a runny nose. Yea!  His back is looking pretty good (to my untrained eyes), we'll see what the x-rays say after the cast gets on.  I have high hopes that it will look good.  The dr's  are saying that because of this long break, we might have to continue casting through the summer.  Right now (with no cast, ha ha) that sounds fine.  I feel like we've gotten used to it, and it's not a huge deal like it was.  We'll see if I still feel that way on Friday. :)

New Casting date

Shriner's hospital called me yesterday to tell me that they want to reschedule Russell's 4th casting date for Feb 21.  That's right-4 days before his EMG at Primary Children's hospital.  I talked to the anesthesiologist, and she said that he'd be fine to have two procedures that require anesthesia that close together.  This has me cheering Yea! Only ONE trip to Utah in February, and NO trips down there this month.  We've gone down there every month since last February, I think.  It's so nice to have that extra time at home.   Yea  yea yea!  I know I shouldn't complain about going down there-we have a LOT of family down there that we get to see everytime, and they help us out SO much.  I wouldn't change that for the world.  So many people don't live as close as we do to both family, and the medical help we need, and I'm truly grateful that we do live so close. 
But I don't enjoy traveling, and I enjoy packing even less.  So I'll take this month off of that drive (and the packing!), and just enjoy being home as a family.

marathon

Russell has been stuffing his face with all food in sight pretty much nonstop since 9am this morning.  It's now 11:30am.  I've never ever seen him do this before.  Ha ha...the power of prayer! Thanks everyone!

things are looking better

Russell is doing better.  No fever, no throwing up for almost two days now, and the breathing is much better too.  Now we just have to help him regain the weight lost and his strength.  He's just weak after being so sick.  Of course, we are not getting a new cast next week anymore.  We'll give him some more time to recuperate.  We're also going to quarantine our family a bit.  The dr says his immune system is really weak, due to all the stuff he's going through, and the myopathy may just make him weaker still, and that we need to keep him away from large groups of people.  So we're still sending Tyler and Emalyn to school, and Krysta to preschool, but Russell will not be going anywhere (thank goodness Tyler is such a great babysitter!!!) other than sacrament meeting.  So I'm not helping out at the school anymore and I'm doing my best to cut out some of our activities, just until flu season is over.  Then I think we can resume normal life.  I'm not going to be frantic about this, I'm just going to cut out what we can and not worry about what we can't.
Thank you all for your support.  I think it's amazing how we can reach out to eachother through social media, and feel so much love in return.  This would be so much harder without everyone who reads and responds, both here and in email or phone. 

sick...

Russell is very sick.  Yesterday, we took him to the dr and found out he has influenza.  Today, we grew concerned that he wasn't breathing well and took him in again, and he tested positive for strep.  He's been throwing up, and has a temperature, and keeps choking on everything except drinks.  I'm sure the muscle weakness in his throat, plus all the swelling due to both illnesses is causing the choking.  Please keep him in your prayers.  I'm confident that he will be ok, and that now that he's on a steroid (to soothe his swollen tonsils and help him eat and breathe better), tamiflu, and an antibiotic, he will get better.  I'm concerned also because he has been losing weight and now is unable to eat much and not keeping it down.  I think his immune system is weaker due to all the casting and the myopathy.  Thank you for your support and your prayers.  I'm sure he'll get past all this, but oh man would I like to be on that side of it now! Ah well, we all go through these things, don't we?  I'm so grateful for the blessing of prayer.  You are all such a great support to us.

more rescheduling

We had to cancel Russell's EMG at PCMC next Monday, because he's got a really bad cold with a cough.  He seems to be doing better today, but the last couple of days got me a little worked up because he coughed so much.  He actually slept through the night last night though, and today seems to have more energy.

The new date for the EMG is Feb 25.  That's really good, because he's going in for his next cast at Shriner's in just a few weeks, Jan 29.  (Yes, we finally got that rescheduled too.  Yea! :) )  I am glad he won't be getting the two anesthesia procedures closer than that.  Now if we can just get him healthy, and keep it that way...