Busy Summer

It is hard to believe that the end of summer is almost here and the little ones will be returning to school again soon (at least in our little neck of the woods they will be).  It has been a while since I've posted but must say...I think it is with good reason...

The SOLD sign just went up last night!  :) 

For those of you who may not know, after almost 3 years of searching we've finally found and purchased a home which we feel will better meet Ethan's needs as he gets older and grows bigger.  In order to facilitate all of this (or at the least to make payments easier) we had to sell our house.  We've been working on it since we purchased our house and finally got it on the market last Saturday.  Every spare moment went in to packing up stuff that we could do without for a couple weeks, finishing off the projects that got started but for some reason were never completed, touch up work and just generally getting the house show ready.  We were delighted to find that all our hard work paid off as there was interest not only in our area, but in our house as well.  The closing on this house is close to that of our new house so we won't have to carry two homes for long.  :)  Everything has worked out amazingly well and we're quite delighted!  Next week is the big move to get into the new house, so I may not get a chance to update much...

Since my last post, the kids have both been to camp and enjoyed themselves.  Lorelei attended art camp again for part of the summer and made many beautiful art pieces.  All inspired by my favourite artist Salvador Dali.

Ethan attended Gym & Swim camp again this year, but due to his recent surgery was only able to attend every other day.  He still had a grand time when he was able to go.

Watching bubbles.

 

 

Ethan had another wonderful volunteer again this year.  He has been experiencing increased pain for the past couple weeks and in the pool was the one time he would fully relax and let go of his tension.  It was really nice to see him have a chance to be comfortable again.

 

We've had him to see the orthopedic surgeon and although his x-rays came back the same as post-surgery, Ethan will have to have a CT scan to better see what the screws in his rods are doing.  There is a possibility that due to the weakness of Ethan's bones the screws may have come loose...but we're hoping we just pushed him too much with therapy or that he is just having some temporary muscle pain.  He has an MRI scheduled early next month to see how the cysts around his brain are compared to about 6 months ago and we're hoping we can run the CT scan at the same time to take advantage of his sedation for the MRI.  As always, good thoughts are appreciated!  





Another Year Older...

It is so hard to believe that Lorelei is already 8 years old!!!  It seems like yesterday she was that tiny baby who fit on my belly.

Now she's over 4 feet tall and growing.  She recently celebrated her birthday at a local Build-a-Bear with some of her friends.  They all got to pick a stuffed animal and accessories.  The girls had a great time!

They also wrote their names and those of their new stuffed buddies on the yellow bear Lorelei has in the above picture (which of course she got to keep).  She chose to stuff a bunny that day (laying beside her).  As usual she was spoiled for her birthday...and if we haven't already done so, thank you to all who thought of her!  There are times she feels like she has to take a backseat in attention at home but I do not think that was on her mind that day.

Lots of Little Changes

Ethan getting a saline nebulized (wet) treatment a week post-op in the hospital before bedtime.

After just over a month in hospital, Ethan was discharged on June 26th.  His trip home was horrible!  He was in so much pain that he got sick twice, he moaned and cried the whole way home.  Once we got him home and settled in (laying watching TV), he calmed down and was happy again.  When we went for his follow up appointment on July 3rd, he got sick 3 times on the way to the appointment and moaned, flinched and groaned the whole way home.  We moved all his out of house appointments and are trying to let him take it easy while he recovers.

From the follow up appointment we were told that he would likely be in a lot of pain for a month to 6 weeks post-operative.  It was suggested we give him Tylenol and Advil around the clock, but we chose to only medicate him prior to times he would sit in his wheelchair.  That seems to have worked as right now he is tolerating his wheelchair for longer periods (than before) and does not seem to require Tylenol.  I think when he gets tired it is harder on him.  We have tried him in his walker a few times and he will tolerate it for up to 10 minutes but then needs out.  Hopefully as he continues to heal he'll do better with this.  His incision looks great and has healed well.  One of the nurses who cares for him said that when she listens to his chest, she is now listening to his heart in a different spot ("where it should be") and that his lungs sound great.

He does seem to still have some pain and is also currently dealing with a lot of gas pain.  It bothers him through the night and sometimes even awakens him for hours at a time.

While Ethan was in hospital, one of Lorelei's school projects was to build a kite.  It was a project she and Daddy undertook over a weekend.  The end result was the largest kite for her classroom with a wingspan of about 7 feet.  Lorelei chose the style, assisted with the markings for cutting, taping of the kite and generally assisting with the building process.  After it was completed, she decorated it too...

You can see it in action here https://www.youtube.com/watch?v=4Lyrdr3wYg0 Youtube edited the video and that's why it looks like they are about to get zapped by lightning but it was not that bad. 

Shortly after discharge, school ended for Lorelei.  She wanted to dress up nicely for her last day, so she wore the dress she got for Christmas from her Nan & Pop.

The end of school also brought about a sight you will likely only see as the kids (and teachers no doubt) empty out their desks and gear up for a summer away from school.

The return of long lost containers.  The one day she brought back a total of nine containers...it is no wonder there was so much space in my cupboards recently.

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.