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.

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.

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!

Ethan Tries to Self Wean

Two days ago, Ethan rubbed his nose a couple times and moved his oxygen nasal prongs - perhaps in an attempt to self wean off the oxygen?  He was only getting 0.2 litres of oxygen by prongs when he did this.  As of yesterday morning, Ethan has been off the oxygen and on room air!  :) 

We just received our discharge papers so he will be home for the weekend!  Maybe a birthday gift from him for Omi as I know one of her big wishes was for him to be home soon.

Moving on up...

Ethan being cute in the critical care unit.  

This picture was taken two days ago.  After 11 days in critical care, Ethan was just sent up to the regular floor to continue his recovery.  They were able to really wean his oxygen down to 1 litre by nasal prongs and he is doing well.  :)  Hopefully it won't be long now until he is home again.

Now with crazy hair and visiting with his sister, Ethan is in his new room. 

Over a Week and Counting

We've now been in the critical care unit for over a week.  Ethan's oxygen needs have been going down and he looks great.  He is well rested and in good spirits today.  He still sounds a bit chesty but is doing pretty well.

Yesterday morning he woke up at 4 am and decided to party for a bit.  He had fallen asleep before I arrived at 9 am and had a long nap.  He looked so relaxed...

His oxygen monitor reads 17 and 60...this morning he is at 14 and 45.  :)  We're really going in the right direction.  He was given the green blanket above during his visit here but it was thrown into the wash here and lost.  :(  He also received a really nice e card from his friend Sophie.  Thanks for putting a smile on our faces Sophie!  It is nice to know you're thinking of him.  :)

Unfortunately, this morning he blew his 3rd IV.  I'm not sure if you can tell just how puffy his poor right hand is right now...but it is interesting to note that his fingers don't look quite so long.  His geneticist had said that his fingers look SO long (everyone points it out) because he doesn't have much weight on.  And now with his puffy hand, I can really see that his fingers don't look quite so long anymore.

Five Days and Counting

This morning at about 3 am marked the fifth day that Ethan is in the critical care unit.  His chest x-rays show improvement and he is back to his usual self, but is still requiring a fair amount of oxygen.  Due to his oxygen requirements, we'll likely still be here for a bit longer.  He is on his 3rd IV, has continued to removed some of his leads/probes, tried to remove his nasal prongs again and they have restarted his feeds.  His sleep is still all over the map, but he does get a few hours through the night.

In the above photos: the first one was taken on Friday afternoon when he started smiling at me and being more aware; the second photo was taken on Saturday - he was looking for me, smiling and giggling at me and playing tickle games; the final photo was taken yesterday when he was playing with his iPad and watching TV.

A couple of days ago he also tested positive for c-difficile again so has additional antibiotics on board to combat that.  A usual course to fight c-difficile would be to stop the antibiotics he was on, but since his chest is still quite weak, the felt it was better to continue the course and add the c-difficile fighting antibiotic.

We still do not have any news on his upcoming surgery but do know that he will likely have to be home and healthy for 4-6 weeks before they will be willing to mess with his airway to sedate him for traction...

Potential Delay in Plans

So seems our plans may be changed again...

Ethan went to therapy last week for his monthly stay and unfortunately when he got home on Sunday within 9 hours he started vomiting and had a fever.  He continued to have a fever, vomit and started to have really foul smelling stool through to Tuesday afternoon when I brought him in to be seen by a doctor to see if he had an infection.  His ears seemed like they could be on the verge of an infection so he prescribed something to stop him from vomiting and wanted to see us in 24 hours.

Meanwhile, on Tuesday we got the news that Ethan's Shilla procedure has been approved!!!  :)  Plans for his traction and surgery are in the process and as I hear more, I will post it.

Back home with Ethan's anti-nausea meds and he did stop throwing up but his stools were getting looser and he started to have respiratory issues.  He did great with the anti-nausea meds for his first two doses but then he started to throw up just before his next dosings.  Just over the 24-hour mark, we brought him back to the doctor he'd seen on Tuesday and at first things looked alright...then they checked his oxygen saturation levels.  Now I know there is a chance their equipment wasn't reading well...but he was reading at 61at the low end and 81 at the high end but a lot closer to the lower end for much of the time.  They tried to do a nebulized (wet) treatment to help open his airway but then had to set up an oxygen tank.  They called the paramedics and we took a bumpy ride to the hospital ER.  His oxygen saturation was still an issue, but wasn't as low as at the clinic (he'd also received oxygen through the ambulance ride).  After several hours in the ER and discussions on where they would admit him, we were admitted into the pediatric critical care unit.  Since his only really need was for oxygen, they had hoped to get his needs low enough for them to send him to the floor to recover...but he just would not tolerate having his oxygen level reduced.  In the unit he was on 100% oxygen for over a day. 

Yesterday they tried to wean him down during the day and we got as low as 70% but at night we had to go back up to 80%.  Today while he was awake they were able to bring it down to 65% but as he falls asleep they have to raise it again.  We have sent several 'failed' stool samples - apparently formed means something different to the lab than it does to us - and his nasal cultures came back positive with metapneumovirus.  Despite still working hard to breath, ending up with a useless IV (that had to be restarted - 4 try trauma) and having blood drawn frequently, he is pretty alert and active.  At times a little too alert.

He pulled out his nasal prongs and tried to challenge himself without oxygen - he failed and has pulled off a couple probes, his oxygen saturation monitor, and keeps fighting sleep - which he desperately needs.  If we can get his oxygen needs down we can move up to the floor for continued recovery.

What does all of this mean though for the progression of surgery?!?  We're not sure yet, I'll touch base with the surgeon's office next week to see if we have a plan we can proceed with...

Best Laid Plans

Ever notice sometimes no matter how well you plan for something, a small thing can fully change your plans?

Okay, so in this case it wasn't something small it was something totally out of the blue.  We found out yesterday that Ethan will not be proceeding with spinal surgery next week as tentatively planned.

You might think it is because he is sick with a cold or something...but you'd be surprisingly wrong!  Ethan is in good health right now and doing well.  It is because plans have changed.  Ethan's images were shared with several orthopaedic surgeons over the past month and the one thing everyone can agree on (including us) is that he needs surgery.  It is just what type of surgery that is now in question.

Given the severity of Ethan's scoliosis, the surgeon would like to start by putting him in traction.  Not the type of traction you usually see in movies, but Halo traction...which the surgeon describes best as a crown of thorns.  This would be for about a month and then he would like to proceed with Shilla spine surgery.  It is considered experimental and new (has been around for about 10 years), but it borrows elements from the tried and true fusion or growing rods surgeries.  It would mean that a small part of his spine (where the scoliosis is the worst) would be fused and then rods would be placed along the spine with special screws that allow the spine to grow as it normally would and the rods would expand (or grow) with the spine.  It would significantly reduce the amount of surgeries he requires which would reduce the numerous risks for infection related to multiple surgeries.

We do not have any details yet on when and how we will proceed but hope to learn more later in the week after the surgeon consults with Ethan's neurosurgeon.  It sounds very promising though...

I keep falling behind in posting...

Late in January, Ethan got one of his 4-6 year immunizations and had a bit of a reaction to it again.  This is the second time he's had a reaction to an immunization but it wasn't as bad as the one from his flu shot.  He also saw his neurosurgeon for a follow up appointment and we discussed his December MRI.  His imaging is a bit of a mystery (as it always has been).  The space where his Dandy-Walker Cyst is is still quite large but it is not clear whether or not it is filled with fluid.  Since he is not showing any symptoms we're going to continue to monitor him especially since his back is more of an issue right now.  Ideally once things are underway with his scoliosis repair, the neurosurgeon would like to see him orally feeding.  Apparently it is a good way see how the cyst is affecting him...but it would be hard to tell if his swallow issues are because he hasn't orally fed since November 2010 or if it is a neurological issue.  Kind of a catch 22...

On the plus side, Ethan's neurosurgeon has agreed to be available for Ethan's tentative surgery date on March 26th should the orthopaedic surgeon be willing to have an extra person in the OR.  We need to find out where the VEPTR will be placed to be sure it avoids the shunt area.

We also saw his cardiologist last month and we won't have to return for 2 years now.  His ASD has corrected but his left pulmonary artery is still constricted.  It does not seem to be causing his heart any undue stress so we can just monitor it for now.

Recently Ethan was working with a communication iPad for about 4 weeks and he did pretty well.  He mastered the phrases, "I want to watch cartoons" and "I need help".  With a bit of help he was able to 'say' "I want to play with my iPad".  It was pretty neat to see the progression.  Since it was just a loaner, we were only able to use it for the 4 weeks.  They had a team meeting and decided that they support the idea of proceeding with another iPad for communication purposes.  We are now awaiting its arrival.  An interesting development recently is that he is pitching full out temper tantrums when things don't go his way.  I think a lot of it is age appropriate behaviour, but also think that he is feeling frustrated.

Ethan also tested a new standing frame recently.  It is the third one we've trialed.  It has been a long time since we've had a standing frame in the house and he did really well with it and seemed to enjoy it.  I think he likes the different vantage point.  Surprisingly we were able to trial it for longer than was initially anticipated which was great but now we are without again.  It is the one national product we tried and it has been our favourite.  We need to wait for everything to come through on his walker before we can submit a request for funding assistance with the standing frame.  While it was here, we had him in it 2-3 times a day as time permitted.

His respirology appointment went well, they said his lungs sounded really great and that he appears to be doing really well.  She thinks that the VEPTR surgery would be of benefit for Ethan.

He had his second hair cut and it went pretty well (although there were more people at the salon than we would have liked).  Lorelei joined us and wanted to be part of the photos.  He looks so cute with his new haircut (large one below)!

Also big news...my baby boy turned 5 last month!  Can you believe it?!  We were not able to celebrate with him on his birthday as he was in therapy.  We did pick him up early from therapy but that was because he started to show symptoms of being sick with a cold.  We celebrated with an ice cream cake and let him try a taste of whipped cream (top centre picture below)...I think most of it came back out of his mouth as he didn't quite seem to know what to do with it (or didn't like the taste/sensation).  He did enjoy opening his presents and has likes playing with his new toys.

 

With his upcoming surgery, we felt it was better to move Ethan from his crib to the larger bed that Lorelei was using in a previous post (she is now using a twin bed which friends have loaned us).  With spinal correction, there is a high likelihood that he will grow an additional 2-4 inches so we thought that it was better to have him used to the larger bed before he comes home from surgery.  I think he likes the extra space...but our bedroom is now even more cramped with his bed in there - we sure hope we have success in finding a new home soon...

 

 

A New Year and a New Plan

Have you ever watched those shows where they kind of flash forward, to the past and back?  Well, I thought I'd try to write that kind of post this time.

Early in January we met with Ethan's GI doctor who after feeling his abdomen suggested there might be some stool blocking his system and ordered a set of x-rays.  Since Ethan has been x-rayed and CTed so much that I'm quite surprised he doesn't glow in the dark, I requested (and he agreed) to combine x-rays with those for his orthopaedic surgery follow up later in the week.

When we went for Ethan's x-rays, I had explained to the technician that we were hoping to reduce some of his exposure.  She said that since a spinal x-ray is a tight picture of the spine we would not be able to reduce the amount of x-rays but at least it was just one trip. 

After the first x-ray she came back to redo it.  She said something like, "I need to retake that x-ray since I did not capture his cure in the image.  I knew he had a curve, but did not think it was quite that much of a curve."  I had a duh moment where I thought I should have told her that when she said it had to be a tight spinal x-ray.  I knew his scoliosis was quite pronounced (heck, I've been with him for every one of his x-rays).  So I joked about having been right that we could have limited imaging.  I also (in a straight face) said to her, "So...what you're telling me is that we're going into surgery?!?"  She was a bit flustered and said, "I'm not saying anything..."  And I cracked to let her know, we knew the curve was bad and we know we have to go for surgery, we just don't know when.  With their PCs down that day, I figured a little ribbing might lighten their Friday.

As you can imagine all kinds of thoughts were whirling through my head over the weekend.  On Saturday night, I had a dream and in this dream I so vividly (through two different x-rays) saw the poop in Ethan's GI track.  One x-ray showed it from the front (roughly 2 inches long) and about an inch thick from the side view.  My mom suggested, if I'm dreaming about it then he must not have a blockage.

The end of the weekend, we received an email from Ethan's GI doctor...it was his spine that he was feeling.  "It is incredible the degree of scoliosis," which he didn't appreciate before.  Ethan doesn't have any stooling issues and we're to keep things up as we have.  A bit of good news at least.

We had our follow up appointment with the orthopaedic surgeon the same day we did the x-rays and he is quite thrilled with how well Ethan looks overall and that he has been pretty healthy over the past year (we've been getting a lot of these positive comments lately).  He also feels that Ethan has gained nicely and should have enough padding for when we start with his next round of surgeries in March.

That's right, I've beat around the bush enough and come to the point.  The surgeon has decided it is time to start with Ethan's scoliosis repair.  We're still planning to move ahead with the VEPTR and the March date hopefully allows for a few things: 1) them to secure the equipment required, 2) it is later in the season so should hopefully not be a very risky time for Ethan to be in hospital, and 3) for Ethan to be healthy enough to proceed.  The surgery takes up to 6 hours and will require about a week long stay in hospital to start recovery.  It takes a couple months to fully recover and then he is monitored frequently as due to growth they have to expand the VEPTR or risk breaking his ribs/getting over correction causing the scoliosis to curve the other way.  Typically they are revised every 4-6 months and fusion surgery often doesn't occur until earliest 10 years of age...which will mean a minimum of 10 surgeries once we start.

I must say I wasn't surprised to hear that we're at the stage to start with surgical intervention.  We've been trying to put it off in non-surgical ways but are only able to maintain him a bit.  And if you factor in the above comments, it just illustrates how bad his scoliosis has gotten.  BUT...I'm nervous!  Before heading back home, mom asked me not to research the surgery or stress too much.  I can't promise either but am trying to at least hold off on some of the worrying.

Rounding out 2012

Wow!  I started this original post when there was just 9 days left until Christmas Eve...and now we're into the New Year!  It is crazy how fast 2012 flew by!  We weren't even close to ready for the holidays when I first started the post but we did get everything done in the end that we hoped to...or I've forgotten what it was I wanted to do if we didn't.  ;)

The kid's cousins on Clayton's side and their family have recently moved closer to us and we have had the opportunity for some really lovely visits together.  Lorelei is delighted to have her cousins come visit her and to share/show them her stuff.  (She doesn't often get to have friends over to play so she crams in all the playing she can with her cousins while they're here.)  I think Ethan enjoys their visits as well. 

This winter we did do something we haven't done before, and Ethan got to join us...

We went to the local Santa Claus parade!  We bundled up the kids, grabbed coffee & hot chocolate and headed out.  I think overall it was a pretty good outing...but it was bitter cold!

Ethan, Kalianna, Auntie Pengo, Mariella, Clayton & Lorelei watching the parade.

All bundled up, Ethan tolerated most of it, but by the end he was really cold and it took a bit for his hands to warm up again.  Thankfully his Aunt is better prepared and let us borrow some leg warmers to keep Ethan's footwear on.  Mental note: Next time bundle up better and remember mitts and hats for everyone.

Ethan's incision site has healed well and looks great!  He now has matching incisions (which was planned, I asked the surgeon ;)).  The only other medical thing for Ethan last month was his MRI...and we'll know more about the results later this month.

This year we decorated earlier than we have in the past couple years and Lorelei took the lead role on decorating the tree.  She did a great job and only needed a bit of coaching to make sure decorations were all over the tree and not clumped together.

Ethan watched from his play spot on the floor, even reaching out for decorations as they were being put up and from the tree at later times.

 

Ethan lost another tooth (or two?) mid-December, it has been a while since he lost a tooth but I was quite thankful that it wasn't one of his adult teeth.  We were lucky enough to capture it to be sent for analysis.  I do not anticipate it being different than all the other ones we've sent.

 

 

The rest of the month we pretty much got ready for the holidays and everyone but Ethan worked at recovering from a cold.  Ethan spent some time chill-ax-ing and watching TV in an easy chair.  (His right eye is patched to make him work his left eye and retain vision in that eye.)

 

Recently we'd picked up a larger bed that Lorelei has been using, and for the first time in about a year or so we put Ethan in with her for a little visit.  She loves it when he comes to her bed and this was no exception. 

 

 

Ethan did a great job opening presents this year.  We got through all of them in one day and he unwrapped (or at least partially unwrapped) all of them.  He ended up with a lot of fun toys.  The following picture is him opening up a really neat musical toy that I'm sure he'll love once he fully explores it.

 

 

One gift for Ethan was a big disappointment.   We'd picked up an expensive, geared to children, stylus for use with the iPad but it did not light up the choices/information so is useless for him. In an interesting turn of events I found a stylus for $2 that works perfectly for him. It is a bit slimmer in build but he was using it and choosing it for hand-over-hand connect the dots numbers.  :)

 

Kalianna, Mariella and their parents came for another visit over the holidays and the kids had a great time playing together.  We took them out one day to an indoor play space.

  

 

Auntie Pengo & daddy also got in on the action.

 

 

Then we took them sliding to wear out any energy that might be left...but I think the parents were more tired than the kids in the end.

 

 

While on the hill, Lorelei and daddy even got some airtime.

 

 

It was a great outing although quite chilly for the photographer - nothing a round of hot chocolates didn't fix.  Lorelei was quite thrilled to have so much company over the holidays!