More Appointments

Since Ethan came out of hospital he has been keeping me quite busy with appointments this month!  We had an appointment with Genetics.  She took his history from when she last saw him (at a couple months old) until now.  She feels very confident that he does not have the syndrome I was questioning but is on the search to see if he does have a syndrome we can identify.  It may just be he has his own (Cutest Boy In The World - I'm telling you!), but given he has multiple things going on that typically means there is a syndrome of sorts.  She sent us home with a requisition for blood work and will let us know if anything turns up.  If there is a question that it could be genetic, Clayton & I may be asked to have our blood checked as well.  But there is a high likelihood it will come back inconclusive.  She took more pictures of Ethan's tumour sites and his long fingers.  She discussed his skin and anything else she thought of during the appointment.  In her file on Ethan she had photos of him when he was younger, it was really cute to see him in those photos and that was what really prompted me to get his hair cut.  I've been talking about since late last year and am really happy we finally had it cut!  It is so nice to see his ears without hair hanging into them.  :)

His new brace came in the day he was admitted so we had to wait a bit to have him fitted, and then it took me even longer to get a picture of him in it.  But here you go, the new lighter brace (than the cast anyway) and hopefully the salvation for his back for a while to come.

He was swatting me out of the way, I was blocking the TV, but you can see how it fits around him in a very masculine fashion.  ;)  As you may notice as well, we're continuing to put his casting shirts to use. 

We had another saliva study done that shows he refluxes a lot (but it didn't seem to go all the way up to the lungs), and we did not notice anything in his lungs.  The results of this study will be provided to us in September when we see his Respirologist again.

He had his eyes checked again and shows a wee bit of improvement in sight but did not cooperate with the images for the whole appointment.  She figures it was more a case of him being done participating than a vision issue.  She had played Dora at the start and I suggested next time we wait until the end of the appointment to test his distance vision with Dora as he likely wanted to continue to watch TV instead of look at the images on the cards she had for him. 

We tried to fit him with a bath seat, but the options provided to us just didn't work well for Ethan/our bath.  We see the OT again next week and hopefully she'll have a more suitable option then.  We still have several more appointments to round out this month.

Happy July

A couple years ago, we got into big trouble with Lorelei for not taking her out to see fireworks on one of the many occasions people let them off.  Then early in 2011 we were admitted to hospital during one such occasion and since they have such a nice view we got to see fireworks set off throughout the city.  I'm told the ride home was lots of fun too as there were fireworks still being let off.  I took her to some fireworks last year but since it was storming we had to watch them from the car.  We had front row seats of course (not many people had ventured out when we pulled up) and I kept the windows down.  It was really kind of neat to watch the lightening strike between fireworks.  It was kind of like Mother Nature was contributing to the celebrations.  Recently Lorelei and I went to watch the fireworks again at the same location as last year...but with beautiful weather we sat in camp chairs with friends.  We travelled there with friends, met up with some more and then found a couple more.  All of them were Lorelei's age and they had a blast playing while waiting for it to be dark enough for fireworks.  Lorelei loved them and kept trying to creep closer and closer to them.  I find it somewhat amusing since at her age, I really wasn't a fan of the noise they made.  The sparklers were more my speed.  But she loves herself some fireworks!  It was a very good show that lasted almost 1/2 an hour.  I wondered if Ethan would be a fan of them, but he was long asleep by the time the fireworks started.  Maybe that is a goal for a coming year...

On the following stat holiday we met up with friends for breakfast and decided to go for a stroll.  Ethan was with nursing that day so it became a Lorelei, Mommy & Daddy day.  The trial we walked on out would be great to bring Ethan on, either in his walker or in his wheelchair, provided it wasn't too sickly hot as it has been lately.

It was pretty neat.  We started the walk with Lorelei finding a large moth, "the size of a cookie" she called it, then we saw a family of raccoons climbing a tree to their hollow and then a gaggle of geese.  "Watch for geese poop!" Lorelei warned cyclists/walkers going by.

We had Ethan's follow up appointment recently from his hospital stay and he got a clean bill of health.  :)  The same day he also got...

his first haircut!  As you can see it was getting pretty long.  He did really great and only got antsy at the end of the cut.  It looks much nicer, I will try to get a better picture of it and post shortly. 



Home Since Monday

Evening!  Ethan was discharged and we were home by 8:30 pm.  Both the MRI and CT scans came back stable from previous images.  Which is good but still raises a lot of questions.  We have several follow up type appointments next week and the fitting for his new brace.  I got a call today while at work that Ethan was throwing up again, but despite being sick four times he is still in good spirits and has lots of energy.  We're just giving him pedialyte right now, but hope to restart calories tomorrow morning.

While in hospital I captured one of my favorite pictures of Ethan.  I love how he's holding on to the crib while sleeping...he didn't even wake up when I took the picture.  :)

Still Admitted

...but Ethan seems to finally be improving somewhat.  He was more chatty today and awake for a good while.  It seems after many tests, his brain is fine.  WHEW!!!  But his neurosurgeon wants to keep our December MRI date to keep a close eye on Ethan's cysts.  Although they are stable they are now questioning their make up - which was a total shock to hear.  But this information was 2nd hand and maybe it isn't as it sounded.  I will reserve comment on this until we've had more follow ups.

Although they were trying to admit him under pneumonia, he clearly does not have a pneumonia.  Our respirologist was by and she is running some additional testing since we are in hospital and it could shed light on his lungs and their function or any lack there of.  We just had the CT scan this afternoon so do not yet know the results. 

So with all other things ruled out, it seems it is a gastro-intestinal bug.  It had a very weird presentation and that confused a lot of us (including the doctors).  They took a stool sample today, so hopefully we know at some point what the results are.  A swab was taken his first day and we are still awaiting the results to find out if it is a virus and which virus it might be.  Apparently, they now send the swabs to a larger city nearby and have them run tests.  It is much slower in providing responses.  I spoke with the doctor who runs the therapy facility he attends and they assure me that none of the other children nor the staff have any signs of a GI bug...and there isn't any in our house, so where did he catch it?

We took Ethan off the monitors because for the CT the probe spots had to be removed and it was the second time they'd been removed, so hopefully he continues to behave himself tonight and continues to improve health wise.  His sleep patterns are all out of whack again, and I hope that doesn't take long to change when he is home again.

Almost a Year...

That's how long we managed to stay out of hospital!

Ethan returned to therapy on Monday morning and I picked him up on Tuesday at 17:00 as previously planned.  When I picked him up I saw a really lethargic, unwell little boy!  He was so not himself.  They had told me he'd been sick twice that day (during transfers - when moved from one position to another) but was in good spirits otherwise especially in the morning.  He'd slept well the night before and had had a nap.  For someone who was that well rested, he sure didn't look it!  I dialed up Clayton on the cell phone when I got into the car and had him call the after hours clinic because I thought he needed to be seen.  I didn't even get out of their driveway before Ethan had gotten sick twice.  I picked up Clayton and Lorelei (and Ethan's suction machine and a couple other supplies) on our way to the after hours clinic and Ethan was sick again a couple times.  At the clinic he was sick twice.  When the doctor came in she said, "And why aren't you at Emerge?"  And promptly sent us there.  On the way, Ethan was sick again a couple times and in the ER he was sick one more time.  Besides the ones in the car it has mainly been when he was transferred (IE: wheelchair to car seat).  He was admitted last night and we've been running tests to see what is wrong.  We're pretty certain it is not a respiratory illness (they did give him a dose of antibiotics in the ER but we have pushed not to have another set started until it is certain that he has a respiratory illness).  He has not been behaving as though that may be his problem.  His oxygen saturations are okay (a bit of dipping but not much), he is not working hard to breathe and does not have nasal flaring.

His chest x-ray never looks good, so there is no change there and he has not been sick again since last night...but not for lack of trying.  He has been lurching a fair bit but since he doesn't have anything in his tummy he has not been able to get sick.  He is only getting an IV right now and specific meds (that he gags on even though they go into his tummy).  He has had a shunt series (x-rays of the shunt track) done and they show no concerns.  We are awaiting an MRI of his head to see if there is anything going on there.  He has had some loose stool, but they've been odd lately, and only started after the antibiotic/IV fluids last night.  No one knows what it might  be, either a gastro bug or something with his brain.  Hopefully we'll find the answer soon.  His MRI is tonight at 21:00, and we should know the results tomorrow morning...

He has had moments of more energy today, but still far from being his usually wiggly, smiley self!

Long Time to Compose...

Ethan went to have a casting done to create a mold for his new back brace recently and it was very traumatic.  They used fibre glass to create the mold so we laid him on his back and they took the mold of his front side which went pretty well despite me having to hold his hands above his head and Uncle Jon holding down his legs.  Then we had to flip him over and Ethan started screaming and fighting...and it didn't stop the whole time we had him on his tummy.  Ethan has not had tummy time since sometime in November 2011 or earlier and he's never been a fan of it.  On the bright side, he is pretty strong and I guess it is good to work his lungs...but it was really hard to watch.  I think he was a bit panicked about the ability to breathe too as his face was on the table and he couldn't easily turn his head to breathe.  Because of all his yelling he was drooling and had nasal secretions.  I tried to clear it for him with a tissue but it didn't work so well while trying to hold him down.  To top it all off, the person creating the brace for Ethan didn't seem to think it was it was going to do much as his curvature is so far and beyond what the Boston brace was meant to do.
If I haven't mentioned it before, with scoliosis, once detected the typical pattern is to sit and watch...then you move on to bracing and once the scoliosis hits 45 degrees the general course is to do surgery.  Ethan's scoliosis has progressed to above 70 degrees.  We have been trying serial casting in hopes of holding off surgery until Ethan has reached his full growth potential.  The earliest they have done a full fusion is at the age of 10.  This leaves the growing rods or VEPTR (titanium rib) options...both of which require surgery every 4-6 months until skeletal maturity is achieved.  The surgeries are to keep his spine straight at a 1 cm per surgery.

After watching his reaction to the casting for the brace, I started again researching the surgery option with lots of mixed results (and mixed emotions for me).  There are several benefits to surgery- typically it straightens pretty well from the start, opens up the ribs allowing for full lung capacity, may relieve pain from being crunched up.  Then there are the potential concerns...starting with the major one - surgery could cause death.  Surgery can take up to 10 hours, they can lose up to 1/3 of their blood during surgery and it is difficult on healthy lungs.  Given Ethan has chronic lung disease it could be harder for him.  Add to that, that having surgery at an early age could lead to crankshaft phenomenon (where part of the spine continues to curve and rotate despite the fusion on the other part of the spine - front vs back), despite the possibility it could help back pain...it could cause chronic back pain in adulthood, the growing rods could cause spontaneously fusion of parts of the spine (a 4 year old vertebrae/rib size would not help an adult much), the growing rods could break or become infected...  So much to process and try to figure out what is the right course of action for Ethan.  If he isn't in pain now, I'd hate to do something that could put him in pain...is it better to do it now, will it actually improve his health?  As you can see...so many questions too! 

For now I have settled into waiting for the brace to see what it is able to do for him.  Meanwhile, I will start to inquire with the various specialists to see what they have to say about surgery and his health going into it (IE are his lungs strong enough to handle such a surgery? has his heart moved due to the scoliosis?).

On a totally unrelated note...Lorelei got her first two wheeler last week.  She was too sick to test it out, so only got to try it last night.  She has been bugging for one for a bit.

Watch where you're going!

It will take some practise, which hopefully she's up to the challenge of.  As you can see above, she kind of leans in to Clayton and that won't work so when when trying to balance on her own.





Free Bird!

We saw the orthopedic surgeon yesterday...

Although the picture is poor quality...does the above scene look familiar?  How about this one?

No your eyes are not tricking you (if you noticed or picked up on my hints...)!  That is belly and back flesh you see.  Ethan is free from the cast again.  After x-rays yesterday, the surgeon said that there hasn't be a great improvement over last year's images.  The good news is that he isn't getting worse but the improvements are slight.  He is still happy that we're able to hold the curvature (the degree is still pretty severe), but has now prescribed a hard brace for him.  We go on Friday to have him casted for the mold to create the brace which he will have to wear all the time (but it can be removed for baths, etc).  It might free us up a bit more where we could feed Ethan on the road again and not have to worry about him sitting for even short periods of time (the cast would dig in sometimes and we always ran the risk of him pooping up it...but if that happens in the brace we should be able to clean it).  The downside to such braces is that they are not really meant to correct...especially at Ethan's curvature but if it could hold him where he is for at least the summer, that might be good.  It would reduce the sedations he requires.  The surgeon has agreed to follow him closely to make sure that the curvature doesn't get worse.  Meanwhile, Ethan gets to have his skin free.  It needs it too, he has another couple sores on his back.  Poor guy, when we brought him home yesterday he was all itchy and scratched off a bunch of old dry skin.  After a bath and cream he isn't really scratching anymore.  :)  Ethan was starting to outgrow the cast again and I think we caught it before it was too tight on him.

Clayton and Lorelei have cleared their Strep infections, but not before we found out that Clayton is now allergic to penicillin.  My cold is pretty much better and my back continues to heal.  Clayton went with me to yesterday's appointment to move Ethan and his wheelchair.  On Friday, I've recruited Uncle Jon to help out.  Hopefully I fully heal soon so I can care for him as I used to.