New Month, New Cast

Ethan's casting went well today.  For the first time I was able to join him in the OR before a procedure/surgery.  The hospital he goes to has a program allowing you to be there while they go to sleep for an 'elective' procedure/surgery and we only did the training when he was in for his last cast (I didn't even know the program existed until about a year ago).  I was pleasantly surprised that they let me come in with him since we had forgotten to call ahead to see if we could.  Even up until he was called to the OR, I expected them to say no because they have a pretty tight protocol on when you can go in and Ethan's health puts him in a category that I figured would exclude us.  He did really well going to sleep.  It wasn't that much different than watching him go under for an MRI.  The doctor putting him under was really great.  She sang him a fun song.  I am a little concerned about how he will handle his feeds right now and believe that he likely will not tolerate sitting much (it looks VERY snug around the tummy).

I have not taken a picture of him in the cast yet but did grab one from last night after his bath.

Here he is doing some morning stretches before we got him off to the hospital.

And getting ready for the OR.

When Ethan went into the OR, Clayton and I headed to his neurosurgery appointment.  We went over the MRI results from last week.  As it turns out, Ethan's MRI showed that everything is stable.  His ventricles, Dandy-Walker cyst and cysty.  They're all the same as they were post surgery in April.  She plans to scan him again in 9-12 months.  This is pretty great news.  (And you can bet I've touched wood a good dozen times or more today.)

Welcome 2012

So far this winter has started a whole lot better for Ethan than the last one!  He managed to stay healthy for the month of December (and January) despite Lorelei having a cough and me having had a cold.  We had a great Christmas with Clayton's brothers and sister-in-law and rung in a nice quiet New Year.

I just realized, I haven't shared a picture of Ethan in his cast and doing stuff...this one was taken just three days after his cast went on.  Doesn't he look great?!?

The start of the year has been a busy one for us.  The first week Ethan and I spent two mornings at two different hospitals to get all of his appointments in.  The next week he had a lull in appointments but the rest of the month shaped up to be pretty busy - for me at least.

On the 5th, Ethan had to have more blood drawn for the Immunologist and I had a forgetful mommy moment as I was supposed to bring another requisition for blood work for the Endocrinologist.  Ethan did a great job bleeding at that appointment so it really is a shame that we'll have to poke him again. :(  I will have to try to remember to ask them not to use that kind of 'band-aid' again as it left a rash on his arm for quite some time. 

While getting his blood work done, he had his g-tube looked at by the nurse who specializes in them and she said it was definitely irritated and on the verge of being infected.  So we did our best and avoided an infection.  After that appointment we went to see his Immunologist at the other hospital.  She said the preliminary tests show that he does have an immune system and is building immunities to some of the things he'd previously had immunizations for.  But that the count related to fighting viruses was low which could have meant he was fighting something at the time.  She will check that again when his counts come back - they had to be sent away and we should have results in about 6 weeks.  Since she is also an allergist, I asked her if some of his issues could be allergy related since we have a cat and dog.  So we tested Ethan for a few common allergies...and he is NOT allergic to the cat nor the dog.  But he does have an allergy to a common outdoor mould that appears around fall and an allergy to dust mites.  Given where we live the dust mites are pretty unavoidable but we can cover mattresses, etc to protect him from them.

At one point over the holidays Clayton & I tried to put his shirt back on under the cast...but we did not have any success. Ethan was very patient with us during the endeavour.  One of his nurses suggested her and I try again to put it on and we were successful!  Only to have him be sick on it the day after the above appointment.  It was our second day of busy appointments and we started with an alteration to his cast and the surgeon was happy with Ethan's progress in the cast.  Then we had to go to another hospital to have his eyes checked.  The patching we have been doing for a couple years now has been successful in keeping the vision in his left eye and we are to continue with it.  All in all, his eyes are doing well.  :)  It was at this second appointment that Ethan got sick and I had to remove his casting shirt again.  (We were wondering if it was contributing to the irritation around his g-tube as the hole was pretty close in some spots.)

We had a really nice full weekend the start of January so I went out with Lorelei to do some chalk art.  Here is our masterpiece with the artwork designer.  (I'm not quite sure about her pose but maybe she thought it would warm her some...it was surprisingly cool for such a sunny day!)

This was the second time Lorelei and I got creative.  We baked some Christmas cookies (as you can see in the collage) for the first time together.  It's hard to believe it took until this year for me to finally get everything prepped for us to make them.  I had hoped to get Ethan involved in the mixing of ingredients but he was napping when we started.  Lorelei's uncle Ammo helped guide us with the mixing of batter and then as he too took a nap, and Lorelei grew bored of cutting out the shapes, I was left to finish baking.  Thankfully Clayton was around to help keep an eye on the cookies for timing of baking.  In the photo the sugar cookies are a bit browned around the edges as they were the first batch, by the time I was done they were nice and light coloured all over.  And although we never did get to decorating them, I must say they were pretty tasty!  I'll have to do this again next year!

Back to appointments...  We are going to explore some new speech tools for Ethan but I have not really been given the device so cannot tell you how he is taking to it.  We have been trying to remember to use his pictures more when talking to him.  And the iPad he got for Christmas is giving him experience with touching a screen with one finger to have it respond as he would like.  (He is really enjoying the iPad!  Thank you to everyone who pitched in to make this gift happen for him!) 

I had ordered a second casting shirt that came in around the time we had to remove Ethan's original shirt.  It gave us the opportunity to have  the new one altered (a hole put in) and to have the g-tube hole in the original one increased.  By the time we got the shirts back, cleaned and dried, Clayton and I put Ethan's original casting shirt back on on the 22nd.  The following pictures are of him on the morning of January 25th.

I think the cast is starting to get snug.  He had about a week of sleepless nights, waking with gas pains frequently.

Here he is stuffed into his car seat in a winter coat that is too large for him but just right around the cast.  He does not look the image of comfortable here, now does he?!  We were off to a different kind of appointment for him...

His cast removal.  Doesn't he look great?!  The mask is for his protection as are still doing our best to keep him healthy and the technician who removed his cast was recovering from a cold.

He had to have the cast removed because he had an MRI of his brain last Thursday.  We won't know the results of the MRI until Wednesday when we meet with his neurosurgeon.  We will be meeting with her while he is in the OR getting his second cast put on.  Besides a little skin irritation and one red spot he has done well in and out of the cast.  I will try to grab some cast free pictures before Wednesday.

Isolation

It is funny, at a time where everyone else is trying to get together with family and friends for the holidays we are going to be working towards isolating ourselves...well Ethan at the very least.  We have had to cancel and turn down respite and have cancelled at least one session of therapy.  Lorelei was able to attend one holiday party though, so she is happy.

Ethan had his appointment with his respirologist and among other things she suggested we keep him isolated, especially while he is casted.  He does not qualify for the RSV immunization and apparently they will not exempt it because he is over 3.  She would like to see him stay in the cast long enough to work and for his lung to heal from the rough year he had.

...so today we faced our big cast worry...  Ethan pooped up the back of the cast!  And not just a little bit, but up to almost his shoulders.  And my hand won't reach that high!  Clayton was the one home to deal with it at first and then when I got home I took a go at it.  I consulted with the pediatric orthopedic surgery residents and they said, try to get as much off as possible and there isn't much else that can be done and given the holidays and they couldn't deal (read: not yet qualified) with recasting him anyway.  After the holidays I can contact the surgeon's clinic to see if we should do anything.  Clayton got the shirt under Ethan's cast off and we got it cleaned...now we will have to figure out how to get it back on.

Getting a Cast

Although we were a bit late getting out the door, we got Lorelei dropped off at a friends house by about 6:50 this morning so she could go to school and were on our way to the hospital.  Thankfully the roads were good and traffic was light.  We had to wait to register, but that wasn't really that long before he was called into the Pre-op room.

Ethan in his fancy new shirt getting ready for the casting.

Although his eye looks open, Ethan fell asleep before his OR time.  Not surprising, he was up at 4:30 this morning (as were we)...

Ethan in the recovery room.  This cast is much thinner than the last one back to the back.  He recovered very well from the casting this time and I think the shirt fits nicely under his cast.  The cast is still all rough around the edges because they wanted to adjust it before putting on the final layer.

Ethan's cast was adjusted later in the afternoon and they removed an inch in the length and around his face so he can move more freely.  The headphones are to mute the sound of the cast saw.  He kept giggling when she was doing the adjustments to the cast.  It was pretty cute.  :)  They did not put on the final layer as they want to see him again in clinic next week in case final touches are required.  The surgeon said that they got a better correction with this cast than the last time.  :)

All snuggled in for sleep.  Hey wait, what's that?!  He's home in bed?!?  :)  He was discharged home today instead of keeping him overnight.  He already had a bit of play time on the floor today and with a bit of help it went alright.  The good news is the shirts I bought him in May still fit over the cast, so I do not have to buy more t-shirts for him just yet.  Thanks for all the good wishes, I'm sure they did him a world of good!  :)  Now just to keep him healthy...

Hoping for Well Wishes...

So far we are still on course for Ethan to get his cast tomorrow morning.  (You know I'm knocking on wood!)  His nurse said his chest sounds very clear and feels he is well enough to get the cast.  It has been a hard task trying to keep him healthy, especially with Lorelei having a cold!

For everyone who has heard me gripe (for lack of a better word) about the cost of the shirt we bought to go under Ethan's cast, I thought I would share with you what a $73 shirt looks like.

And this is what it looks like when you pay someone to put a hole into it (for a fee of course ;)).

I just hope it works out well for him.  It is supposed to reduce the risk of sores from the cast and to provide more comfort.  It is stressing us out a bit though to be honest...not just the shirt but the casting as a whole.  I know, after all my griping (there's that word again) and pushing to get him casted again and now we have stress???  Believe it or not this stress is not related to the procedure or the fact we have to try to keep him healthy for a while now...it is bowel movements.  That's what the stress boils down to...  A week ago we had to administer some PEG Lite at home, it was the first time we've given it to him (he's had it in the past but that was while he was in therapy)...it took about a day to take effect, but then it came and came and softened and loosened and down right turned to water.  A week later and it is finally starting to go back to 'normal' which isn't all that solid (nor should it be by the way).  But during the past week, we've dealt with a lot of blow outs.  Mainly down his legs, but there have been some that have shot up the back.  How do we protect the cast/shirt?  This is my stress right now.  Minor I know compared to other things we've dealt with with Ethan, but I have not been able to find a solution.  We have had a couple suggestions, but have not found any that are fool proof.  We do not have the luxury of trial and error...we need to succeed to make sure this cast stays on for the whole two months.  Any suggestions would be appreciated!  We use disposable diapers in case you're wondering.  For those who are not used to BM talks - I'm sorry to be so graphic!

On a somewhat lighter note, I thought I would take some pictures of Ethan pre-casting.  It might be hard to tell by the photos so I will explain a bit...

Much to our surprise, this one doesn't look as bad as anticipated (or how it has looked in the past)...I hesitate to suggest perhaps his acupuncture has been doing some kind of miracle???  This is the bottom part of Ethan's curve and it is subsequent to the true (and worse) curve up higher.

If you look carefully at Ethan's hips, you can see how they kind of sway up to the right.  This can be very pronounced at times.

Here you can somewhat see (pictures aren't that great) the rib humps he has.  One is by his Mic-Key button, this rib protrudes a bit more than the other side and up from that you can see a ridge, from what I understand this can be a typical side effect of scoliosis.  As the back twists, it starts to affect the rib cage and often creates a hump.  On a side note, you can also see the scar on the right hand side from where his port-a-cath used to be.  It might be hard to believe, but Ethan has gained a lot of weight since June and actually looks very healthy now.  I find his ribs look a bit bony in this picture.

Here you can see the upper part of Ethan's curve and how it is misshaping his right shoulder.  I really hope that the casting will show some improvement of the scoliosis.  Please keep him in your thoughts.

Here Ethan is ready for bed the night before his casting.  He typically wears this soft Boston brace to bed and in his pony walker and standing frame.

He was just so cute on Sunday afternoon during his nap time that I could not resist taking a picture...and then I joined him in a nap.  It was very lovely!  :)

As for Lorelei, she did seem better with her cold but is coughing a lot tonight and all of her new teeth are starting to come in.

Walking in a Winter Wonderland...

Okay, so a bit of a stretch since I will not be doing much walking outside today, but this is what greeted us this morning.  Like any good child, Lorelei was of course delighted.  Her parents?  Not so much.

Lorelei has been sick the past few days with occasional fevers and the onset of a cold.  She is finally well enough to return to school today.  She got to have too much fun the past two days (thanks to daddy & her uncle), but since she wanted to play in the snow was willing to return to school.
It's been a busy time for us.  I won't go into much detail, but let's just say I'm not a big fan of Nit Picking, but am very glad it has remained isolated to one person.  And really, as frustrating as it is...it really isn't as 'bad' as I thought...lots of myths abound...

On another note, Ethan had the longest day of appointments on Friday.  He got a pneumonia immunization and then had to have blood work done because they will be running tests to check out his immune system.  Then he had to wait for his oncology appointment, they were running over three hours late.  It has been a LONG time since we actually attended that clinic and we don't have to go back for another year.  Especially since there are no real concerns...  It took just about the whole day for those appointments.  Oh, and I also let them take a bit extra blood for a genetic study on drug reactions.  They are trying to find out if responses to things (IE: Ethan's reactions to morphine) are genetic, so I also gave them some DNA to work with. 

On Monday, we met with our Speech Language Pathologist, OT and someone from Augmentative Communications to try to devise a good strategy to help Ethan express himself.  It seemed to go pretty well and everyone was excited about moving forward.  We are going to be working more with pictures/symbols for now.

Yesterday we were back at the hospital for Ethan's pre-admit appointment.  And provided nothing seriously changes - he's good to go for the 7th.  :)  He was also seen by his cardiologist who believes that Ethan's small ASD has sealed, but otherwise not much has changed so does not need to see Ethan for another year.  Ethan also had an ECG done and they determined his heart sounds/works normally.  :)  I love hearing that word associated with Ethan.

So What Else is New?

When I started to write this post it had been 6 weeks since we saw the specialist for a second opinion on how to treat Ethan's scoliosis and the letter had finally arrived at our local surgeon's office.  The surgeon stayed true to what he told us when we were there, he wrote pretty much exactly what he'd said.  Then we waited for word from our surgeon as to when/how to proceed.  Waiting is so hard!  We finally saw the surgeon again almost 8 weeks after the second opinion and (drum roll please)... we will be casting Ethan again.  He is due to be casted on December 7th.  Please keep him in your thoughts that he remains well enough to be casted on that date.

While we were waiting he had the chance to mostly recovered from his recent illness.  He woke up one morning about 2 weeks ago around 5:30 am with a loose stool that got us out of bed to clean him up.  Then as Clayton was repositioning Ethan, Ethan's mic-key got pulled out and we had to rush around to get that back in quickly.  It seems we had a leaky balloon.  Ethan went back to sleep and then woke up just after 8 am vomiting.  By the time I headed to work around 9:30, he'd been sick 5 times, had a fever and was lethargic.  He remained feverish throughout the day, but the Tylenol was able to break it between doses.  From then he seemed to get over that part and into a cold-like symptoms.  Thanks to his sleep deprivation techniques, I then did not rest enough and managed to catch his cold as well.  We're both on the mend now...thankfully!

Lorelei has had an interesting time lately as well.  She lost 4 teeth in about a 2 week period.  It started with some bottom ones that were super loose and then the top front tooth got all crooked.  She lost one on the bottom and the next day out came the top tooth with a little help from Lorelei...

Shortly after numbers 3 and 4 came out as well.  Now she can sing "All I want for Christmas is my two front teeth" and really mean it.  :)