Saturday, December 14, 2013

C's Update and a recommitment to blogging

C is doing very well.  He's up to 28 lbs.  He tolerates having his vitals taken, EKGs applied and gets only slightly grumpy during an echo.  Getting his height measured freaks him out a bit but overall, things are getting a lot easier on the medical testing front.  C is stable from a cardiac perspective and gaining weight again which will hopefully end his FTT diagnosis at some point.

We're in an interesting place with C.  He's in public preschool with an IEP.  Our main goal is to get him to play without lapsing into academic pursuits.  C can read, sentences, books, big words like "anthropology".  He sounds words out in his head and just speaks the word as he guesses it would be said.  It is amazing.  He's been reading since he was 2, which leads to an interesting shift in focus for his parents.  Instead of trying to teach him reading, math, shapes, colors, time, etc.  We are trying to get him to slow down and stop learning so much so quickly!  It sounds strange... but this really creates a gap in his social skills and a huge chasm that needs to be bridged socially.

The kids in his class love him and adore his idiosyncrasies as much as we do. Ultimately, balance will serve him better, so that is what we are striving for.

C is amazing and we are so glad to have him.  I'm sorry I stopped blogging, I'd meant to keep this up as a great way to keep track of our lives.  I tracked the high drama and have failed to keep up with the every day.

My New Year's Resolution is to ensure that I don't continue that mistake.  I am resolving to blog at least once per week.  We've got big changes coming, so look for a new post soon!  

Thursday, August 1, 2013

Holter Monitor Results, Better Late Than Never

Our doctor called and left us a voice mail regarding the Holter Monitor results. The lowest heart rates were in the 40's for brief times, average hourly rates were all above 60. The highest rate was at 160.

C did not drop any beats and remained in sinus rhythm throughout the test. Overall, this is a big improvement from where we were immediately following surgery when his heart rate would linger in the 30's.

It looks like we are not facing the need for a pace maker at this time.  Hopefully C will continue to grow into his heart.


Saturday, June 15, 2013

Holter Monitors... A Party In A Box :)

We had a cardiac follow up last week and everything went very well.  C's repair continues to look good.  His EKG showed sinus rhythm the entire time.  His trauma appears to be settling out, he wasn't nearly as upset with the EKG or echo this time.  Our doctor ordered what he said would be a 24 hour holter test, it ended up being 48 hours.

They have added an additional vendor for holter monitors since the last one we had to have.  We had a long waiting period last time and eventually had to be bumped ahead when it took more than a month and we still hadn't had the test.  This time, we went through Life Watch and used their ACT system.  We received a call when the order was placed, they told us when we could expect the monitor and scheduled a call for that evening so we could have live technical support as we hooked C up to the monitor.

The box includes all the batteries and sensor pads you'd need for anything up to 30 days of monitoring (I'm guessing) It was a LOT of batteries and sensors.  This system wasn't nearly as clunky and big as the one we used the first time.  We were able to apply the sensors, with minimal trauma even though C HATES stickers.  I think it was a lot easier on him doing this at home.

They provide a lanyard to hang the sensor around his neck, which I'm sure works great for an adult, but not so much with a 2 year old.  We ended up taking option 2, which is snapping the sensor to another sticker and sticking it to his abdomen.  The sensor transmits data to a cell phone.  I asked how they thought this was going to go with a 2 year old and they assured me he just needed to stay within 10 feet of the phone.  I ended up rigging a workable system.  We took our Dapper Snapper and ran it through the belt loops of the case they provided for the cell phone.  During the day, C wore the cell phone on the back of his pants clipped on by both the belt clip and the dapper snapper.

I had to call back tech support and figure out if I was allowed to lock the phone.  The thought of 16 toddlers with easy access to this dang phone had me very worried.  I finally figured out how to lock and unlock the phone and we were off... They had asked us to charge the phone overnight and if possible for a couple of hours during the day.  We didn't have a good way of ensuring the charger would make it back home at the end of the day, so we chose to forego the daytime charging.  The phone did die at about 3pm on day one, however, the sensor can store up to 6 hours of data, so we charged it again when he got home from school and just kept him in the bedroom so he would stay within 10 feet without a fight.

We drug a bunch of onsies out of storage for this adventure and they made things a lot easier.  However, the sticker wasn't strong enough and it came off before the end of the day.  Day 2, we  added an ace bandage (thanks for the idea Mom!) which distributed the weight of the sensor better.

C found the experience slightly annoying but survivable.