Merry Christmas!

Hoping everyone had a wonderful Christmas!

This year Ethan had a wonderful time opening all his presents.  It was really nice to watch him participating without much help from us.  I'll update more later, but wanted to send out good wishes before the season is over!  :)

A Time of Reflection

Another whole month has gone by and again I haven't posted much.  Shortly after posting the last time I found out that a 16 year old boy from Ethan's community had passed away.  I didn't know him particularly well but often saw him where Ethan goes to therapy, where he goes to respite and on one occasion at the hospital.  It was in hospital that I met his mom for the first and only time.  He was not doing well at the time (hence the hospital stay) but that was a few years ago and he headed home before Ethan did.  It was my understanding that he was doing better.  It was through another mom that I'd learned his health had been on more of a decline recently and that he had passed away.  I was am so moved by this loss.  He always had a beautiful smile when I saw him and he enjoyed seeing Lorelei whenever she was with me.  I still think of him often and hope that his family is well.  The day I found out about it, I could only think of how devastating it must be for his family and was so lost in thought that while trying to gas up I completely forgot my P.I.N.  I was standing staring at the machine saying, "Oh my, oh no, oh no!"  The man at the other pump asked me if everything was okay.  I raised my head with a bewildered look and said, "I've forgotten my P.I.N.!" He had thought I was trying to use diesel to gas up and was like, "oh can't help with that!".  I felt so foolish.  I continued to stand there until the card was spit out and had to comb through my memory to do an exercise that allowed me to remember my P.I.N.  That's never happened to me before!  The man no doubt thought I was crazy (and likely didn't help lend credence to women gassing up their vehicles)! 

In September, a friend lost their father in a tragic accident.  He was a really great guy.  One of those people who would take the shirt off his back to give it to you.  He worked hard all his life, having to rebuild things along the way at least twice and amassed many friends.  I had the pleasure of staying with them for a while as I got settled after one of my moves and would always stop in when I was in the area to see how they were doing. 

Then recently, a relative of Clayton's was lost in another tragic accident.  The circumstances of this situation seem very odd and I think that the loss of his life could have easily been prevented.  Although an investigation is underway it will never bring him back nor really heal the pain his family and friends feel.

May each of you rest in peace - (in alphabetical order) Michael, Tony and Ty!  You have left positive memories for us and you remain in our thoughts!

October 2013 Review

It is hard to believe that an entire month went by again and I haven't posted...anything really.  It's not that life hasn't been busy, it has been pretty crazy busy to be honest.  I kept waiting for pictures to be uploaded and then was busy with everything going on. 

Before I start the recap of October though, I would like to make a mention that Lorelei started at a new school this year.  I missed getting a bunch of 'First Day of School' pictures, but did snap off the one below on her first day.  School started three days after we'd moved and I wasn't as organized as I would have liked.

 

On October 2nd, Ethan had his staples removed during his visit to the orthopedic surgeon.  There were 40 this time and his incision is half as long as the first surgery because they only removed the top portions of the rods.  I didn't watch them remove the staples from his spine, but did watch Ethan's reactions.  For some of them he didn't even seem to notice they were doing anything...but others really made him flinch.

 

 

We've been back to the orthopedic surgeon again this month and Ethan got a good report!  We don't go back to see them until the start of December.  It is nice to know that he is doing so well this time.  He has started to guard again at times when he is moved, but the surgeon thought that could be because he remembers how much it used to hurt.  I hope he's right as I get nervous when he does it because that was the start to his rod letting go the last time.  

 

Ethan has been having some issues at night about 2 hours after his final feed of the day.  We think it is related to his digestion.  We saw his GI doctor last month and he suggested we change up Ethan's feed a bit.  We're trying that but haven't seen a whole lot of change yet.  We may end up switching it again if we're not able to resolve his gas, withholding, etc. issues.

 

The other specialist Ethan saw in October was the Endocrinologist.  I think his appointments thus far have got to be the best.  We had to do some blood work for the appointment and then they just measure and weigh him.  Turns out his Vitamin D levels are good as is his calcium levels.  We can't improve his bone health any until we get him weight bearing more...but hopefully that will come.  We get to wait a year before we see them again.

 

We had a miserable September and parts of if spilled over into October.  We used to have night nursing twice a week to help us get a bit of rest, but they pulled the nurses until we change something relating to Ethan's bed (which he has been using since January).  He has been pushing out his adult front teeth and has not been sleeping all that well (in addition to his gas issues and needs for repositioning).  Thus we were quite delighted to send him to therapy last week.  I think I would have cried if he got sick or for some other reason couldn't go.  I missed him terribly but must say it was nice to go to sleep and stay that way for more than a couple hours all night long! 

 

We also missed celebrating Halloween with him though.  I was glad to hear though that they carved a pumpkin and celebrated while he was in therapy.  They sent home a great picture of him pulling out the insides with a somewhat grossed out look on his face - priceless! :) 

 

At home, Clayton did a great job of carving the pumpkins again this year.  Lorelei helped out and enjoyed playing with the 'guts'.  You'll notice one of the pictures is her creation from the guts.  Although we didn't get everything done that I'd planned, I was able to create a Halloween wreath, bake cupcakes for Lorelei's class (from a box not ambitious enough to do from scratch), roasted pumpkins, created the leaves for my 'costume' and did mine and Lorelei's face painting (unfortunately, you can't see the makeup that great in the photo, it was more obvious in real life). 

 

 



Home Again!

Ethan came home from hospital on Friday afternoon!  :)  He seems to be recovering a whole lot better than he did from surgery in June.  We have to keep him laying down much of the day and trying not to allow him to hunch forward or create a 'C' with his spine as that could cause issues all over again.  Thankfully, he enjoys watching TV and is mostly calm during that time.  The one issue we have is he finds it funny to roll off the mattress at times, until he succeeds and then typically he isn't too happy about it.  I think he just likes the rise he gets out of us.

 

Unfortunately, the picture where he did look at me didn't turn out as well...so I had to settle with one above where he is watching TV.

Continued Healing

Ethan's pain management seems to be under control this time and he has been doing really well.  One of his IVs went interstitial again and had to be removed.  Then a few days later the other IV was giving us a lot of error readings so we opted to remove it before it could go interstitial too.  On Tuesday, he was up to his usual tricks playing with the bed and calling the nurse.

Caught in the act.

Don't mind his middle finger, he uses it like a pointer finger...he's not trying to be rude.  :) 

So he is now without IV, his oxygen was switched to room air for the humidity and his feed rate has been increased as he has tolerated.  He is still coughing but seems to be managing his cold.  He has thrown up mucous a bit which is his norm.  Thankfully, he hasn't required any oxygen during this time. 

Ethan hasn't been sleeping very well lately, but last night he fell asleep before 9 pm and was out until 5 am.  Not loving the early hour, but glad he was able to get some rest.  He was just so cute, I couldn't resist taking his picture.  :)

That just leaves his tolerance to sitting...  Yesterday was the first time we had him up in his wheelchair (which is tilted back to try and avoid him from leaning forward and damaging the new rods) and he did well for over 10 minutes.  We only put him back to bed because the physiotherapist had to leave.  Today he had two rounds in the chair.  The first was around 30 minutes and the second was about an hour.  We had to feed him so put him back into bed.  I think it was becoming a bit of work for him this afternoon but he did very well!

No crying or looks of pain.  So different from his last surgery.

Post-Surgery

Wow, things have been crazy busy for us recently.  What with buying a house, selling a house, moving, work, getting Lorelei ready for school, issues with Ethan's back...

Here I thought I'd posted an update on the status of our appointments.  Turns out the MRI shows that the cysts around Ethan's brainstem have remained stable since his surgery in April 2011.  Which is mostly good news.  The negative to this is that the neurosurgeon, as always, wonders if Ethan would do better to have them dealt with (shrunk somehow) but to do so can, of course, cause other issues.  So we will continue to monitor and not invite any issues.

As for the CT scan, it wasn't as obvious in showing issues.  We saw the surgeon the following Wednesday and he said he wasn't convinced that Ethan's screws were backing out.  But after feeling Ethan's back, he could better understand our concern and agreed that the screws were backing out.  Especially when we explained that the change had occurred between the Thursday of his scan and the following weekend before we saw the doc.  The plan was for Ethan to go back into the O.R. for a rod revision.

Ethan 1 day post-surgery - still sedated and intubated.

Surgery took place on Wednesday, September 18 in the morning.  Due to troubles securing his airway, it took a long time to get him ready for surgery and the surgery took longer than expected.  When the surgeon came out he explained that Ethan's rods are now hybrids.  The lower half are still the Shilla technique which means they should grow with him as he grows.  The upper half however, are now traditional growing rods, which means the surgeon will have to go in every 4-6 months to manually grow that portion.  He felt that Ethan's bones were not strong enough to keep the screws in them so he attached the rod tops with clamps that go around the bone (which is stronger than the centre of his bone).  To help keep the rods in place, the surgeon did a bone graph to strengthen the area.  Here's hoping that everything progresses well and that he doesn't require another rod revision.

Similar to a shunt, if a rod is going to fail (back out) it typically happens closer to the initial surgery.  This was the case for Ethan.  My understanding is that if there are rod issues after the 6-12 month healing period then it can be due to a broken rod, injury to the spine or loosening of screws from growth.  All spinal rods have the above risks.  If we had proceeded with the VEPTR technique, then you can also end up with broken ribs as a potential issue because they attach to the ribs instead of the spine.

Before surgery, Ethan started to display symptoms of a cold...and it seems that he did in fact catch the cold that Clayton and I both have.  Despite this, they were able to extubate him on Saturday.  Because he was no longer on a breathing tube, he was able to leave critical care and head up to the floor for continued recovery.

Waiting...

Ethan has his follow up MRI and CT scan last week and we are meeting with the neurosurgeon (for the follow up MRI results) and the orthopedic surgeon (for the CT results) on Wednesday.  Since we haven't been called in any earlier, we're not too worried about the MRI results.  Of greater concern is what the CT scan has to tell us...

...especially since we already know the answer.  One of Ethan's spinal rods has let go.  To be more exact the screw(s?) of one of his rods has 'backed off'.  That is the technical term for when the screws get loose and the rod starts to separate from the spine.  Over the past week we've seen more and more loosening happening.  In the above photos (although difficult to capture on film) you can see that there is a hump at the top of his incision just under the tag or by my fingers.  It shouldn't be there!  To touch, you can easily feel the rod poking out.  At times it seems worse than others but for sure it needs to be reattached.  We're just waiting to find out when and how long it will take...and recovery...and...

On another note, we have said our final good-byes to the old house.  I hope the new family gets to enjoy it for many years and make wonderful memories as we did over the past 11 + years.  It was very sad to leave the house for the last time, but I hope in our new house well make just as many and better memories.  We've had a few adjustment issues that we're working through, but hopefully it will all be settled out soon.