Still Recovering...

It has been two weeks today since Ethan had his Shilla rods put in.  Recovery has taken longer than anticipated.  He was in the critical care unit four nights and then came up to the regular floor.  Pain management continued to be an issue, but has mostly subsided now.  The only time he really seems to be in pain is when he is in his wheelchair.  That is also what is keeping us in hospital right now.  Before we can be discharged he needs to tolerate being in his wheelchair. 

Four days ago Clayton started to put the hospital bed into a chair kind of pose.  Despite some grunting, it seemed to go pretty well and he has since tolerated it really well. 

 

If we try to put him in his wheelchair though, he starts to scream, pushes away his iPad or any distraction items, cries and even started to get sick to his tummy. :(  We have found that if we keep it really reclined then he seems to do alright in the wheelchair.  It is going to be our aim to get him used to that and eventually move it more upright as he tolerates.  We still need to work on the positioning of the supports in his chair as they are not quite right and he looks really uncomfortable. 

 

 

The above photo was taken a week ago, and if you look closely you can see a couple of the scars from the pins that held his halo in place.  The sites are still continuing to heal and some of the scabs have started to fall off.

His chest sounds great (so I've been told repeatedly), his oxygen saturations have been good, his IV is out, as are his stitches and tomorrow they're hoping to remove the staples from his surgery.  He only had 10 stitches, which looked really clean when they came out.  He was really upset when they took them out, but I think a lot of it was being forced onto his side as they cut them out.

 

 

During his time in critical he ended up testing positive for MRSA and we are still trying to find out what his C. difficile status is...he has had three negatives, but the last showed him negative for the toxin but positive for the antigen.  I don't feel we've had a satisfactory response as to what that means.  Hopefully we'll get answers soon...

Recovery

It took over 8 hours for Ethan to come out of the O.R. on Tuesday.  When the surgeon came out, he said that Ethan's vitals were good throughout surgery and there was not a lot of blood lost (thus he did not require a transfusion).  They added pins to his legs to pull him truly straight in the O.R. before starting the spinal correction.  The last things to be removed were the leg pins and his crown of thorns.  The holes were the crown was are now starting to heal over.

Ethan had good vitals and remained pretty well sedated and intubated so we went home on Tuesday to try and get a good night's rest.  Overnight he started to have blood pressure issues and had to be put on additional medication to increase his blood pressure which is odd since he has so much fluid on board from the surgery and IVs that he is all puffy (and usually increases your blood pressure).  Yesterday was a difficult day keeping him sedated enough not to try pulling out his breathing tube and also keep him comfortable with the pain meds.  It was very hard to see him obviously in discomfort and not be able to help soothe him or make it better.  It took until about 6:30 pm to finally get him settled a bit.  They were able to wean off his blood pressure medication through the day, but overnight he ran into issues again and had to have them restarted. 

Today he is more settled, but is still sleeping well due to the heavy sedations from yesterday.  They are planning to change out his sedation medication as the one he is on can cause blood pressure issues.  They have also discussed changing his pain medication.

Yesterday we had a chance to look at a before and after x-ray of his chest.  The change is quite remarkable.  Of course, there is still a curve, but no where near the degree it was.  Looking at the before image it is no wonder he was starting to have more respiratory issues.

The hope had been to remove the breathing tube this afternoon, but at this stage I'm not sure that is still the goal for today.  We will likely remain in critical care for another day.  We had hoped to be up on the floor recovering by now...but I guess Ethan prefers the one-on-one care he gets here better.  ;)

A great big thank you to everyone who has sent good wishes and kept him in their thoughts!  We'll try to post photos when we can.

Almost Time...

Under 8 hours now until Ethan goes into the O.R. for his scoliosis repair.  We had a busy day with prep work for the surgery.  He had an I.V. put in and several consultations so everyone knows what to expect. He even had a visit from some of the staff where he goes to therapy.  It was really nice to have them drop by to say hello.  :)

I got him up in his wheelchair for a bit this morning, but he was too tired and napped through his afternoon chair time.  I'm now waiting for him to fall asleep for the night so I can catch a bit of rest as well.

 

When pressed, his surgeon could only say that there will be improvement to his curvature post surgery.  He said it all depends on how easily Ethan's spine can be manipulated in the O.R.  The traction has loosened him up a bit and allowed for some straightening but of course it isn't permanent.  We are planning for him to remain intubated post surgery to keep his airway protected.  Apparently the positioning he will be in in the O.R. and the fluids they give can contribute to post surgery swelling which could make it harder for him to breathe on his own.

 

Have I mentioned that this is a MAJOR surgery and the O.R. is booked for 7 hours?  The duration of surgery will depend on how things are going. 

 

 

If you have any spare positive thoughts to send his way they would be greatly appreciated!  I will try to update when I can.

Hanging Strong...

Okay, so if all goes to plan, there is less then a week left for me to make hanging references.  If you're stuck in a situation, and there are no major concerns, then you might as well find the light side to it!  On a heavier note, they've added more weights to Ethan's halo.  He now has 13 lbs pulling against him.

They did an x-ray last week and he is showing some improvement (mostly in the bottom part of his curve).  When asked, the doctor told me that the amount of correction from surgery will depend on how well he does in traction.

I think Ethan gets somewhat bored just being in the bed most of the time and quite enjoys getting into his wheelchair twice daily.  It takes two people to get him into the chair and it is quite awkward.  Once in his chair we hang the weights from the pulleys attached to his chair (you can see them on the left side of his chair if you look closely) and he continues his time in traction.  He has been drooling and coughing a whole lot more the past three days.

 

Ugh, potentially from the above his oxygen saturation wasn't that great last night so they ended up giving him some oxygen overnight.  He has been without all day and I'm hoping they were just being overly cautious and that he doesn't have anything brewing.

 

They did a new set of x-rays today and we're just waiting to hear the results.

 

As I finished writing this post we had to put him back on oxygen again.  :(  I hope it is short lived.

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.

Home and Doing Well!

Ethan had a good weekend at home and seems to be pretty much recovered from his respiratory illness.  :)  He just finished his antibiotic for C. difficile and we may start another round of antibiotics as we're not sure it is out of his system yet.  We also do not know if he needs to be clear of this before he can go back into the O.R. (for traction and then surgery), how we're going to go about getting his three clear samples (which you need to be considered C. diff free), or what our next course of action is...  But he is starting to get back to his usual routine, which is great!