Just Hanging Out...

Ethan went into the O.R. on Friday morning as planned for traction.  His wonderful neurosurgeon was present for the procedure to ensure his shunt was avoided and kept safe.  The surgery only took about 1/2 an hour and then he took a while in recovery before we could see him.  He was up pretty early that morning and likely took the time to catch up on rest - he's done this before.

Heading to the hospital bright and early.

 

Below you can see how Ethan usually leaned while in his car seat.  This is despite there being rolls to help prop him up.

 

 

Getting ready to head into the O.R.  Ethan and mommy are prepped.  (No comments on the billowy mommy outfit please!)  I was again in the room with him while they put him under before the surgery started.

 

 

A picture of Ethan before traction and in his usual pose (you can see in the photo above how he is leaning to the right as well). Just a wee bit of scoliosis going on there.. ;)

 

 

Ethan settling into his room on the floor.  Fair warning - he is now wearing his halo...

 

 

He has been tolerating it surprising well!  They left the halo alone for a couple hours but by late afternoon they started to add weights.  He again surprised me as this did not seem to bother him.  The only time he's really complained about it was when the surgeon tightened his pins.  Clayton said it was really kind of gross to watch too!  We were both happy that I wasn't here when it happened.  he is getting acetaminophen and ibuprofen around the clock for pain.

 

 

They started with 5 lbs and have added two a day to a total of 11 lbs as of yesterday morning.  Unfortunately, Ethan was stomach sick early this morning so they did not add any weight.  They plan to do an x-ray tomorrow morning to see how it is working before adding more weights right now.  His wheelchair is in the shop to be modified to allow for the additional weight.  Then we will be able to sit him in his chair for a change of position.  I tried to get a picture of how he looks today but was not able to get a good one.  I did however get a picture of the weights...

 

He keeps moving so much that the weights shift lower (and pull him up the bed).  Every so often I have to ring for a nurse to help adjust him back lower in the bed.

 

A happy side effect is that his oxygen saturations, which used to be a high of 94, have been 96% consistently (and at times even higher)!

 







New Wheels

There have been some equipment changes for Ethan recently.  One of those changes is that he now has a new set of wheels.  Ethan outgrew his Pony Walker a while ago and has upgraded to a Mustang.  It took some time awaiting approvals, the walker to come in and Ethan to be well enough to be fitted.  It is pretty much at the lowest setting so we're hoping there will be lots of room for growth.

Ethan has started working with another communication iPad.  One of his nurses was very proactive and attached it to his walker to allow him to have words while he plays on his iPad.  He has only just started working with this app, so it might take some getting used to.  It is more intricate than the last one he had.  He is really enjoying educational games on his personal iPad.

 

We have also just learned that we have a new date for his traction and surgery.  He goes into the operating room on the morning of Friday, May 24th.  He is slated to have the Shilla technique on June 11th.  Any positive thoughts are greatly appreciated as we're quite nervous about the whole prospect.  I find the traction and surgery very daunting and Clayton is more concerned about the surgery side of things as it will be very invasive...and there is no turning back once you go this route.  We know we've exhausted all non-surgical options, and that this is the only option that should improve things for him...but still it is a huge ordeal.