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.