Ethan Loves Himself Some...

 

Farting Dinosaurs!  This video was taken about a week ago now, but Ethan has having a great time playing with the touch screen computer in his hospital room.  I think the delay in the screen responding to his touch is due to the fact that his hands are all drooled up.  ;)

Ethan's sleep schedule has been really out of whack lately.  He is napping late and long and then it takes him a long time to go to sleep at night.  During his sleeping periods he is desaturating (oxygenation goes down really low) and needs oxygen or to be woke up and encouraged to cough to clear his secretions.  He is very cranky when awoken from his nap (or sleep in general I should say) and I took these pictures in hopes of waking him gently.

They are always so sweet when they sleep!  :)

 

These photos were taken on May 26, and I'm sorry to say we're still in hospital!  Ethan was off oxygen for a bit during the day last week, then fell asleep and needed oxygen.  From then it progressed to needing oxygen around the clock again.  His nightly (and nap time) requirements are quite high at 2 litres of oxygen.  The past couple days they have been able to turn off his oxygen during the day but as soon as he falls asleep his oxygenation dips to 78 percent and they have to give him the 2 litres of oxygen.  You can tell when he is having some issues.  He works harder to breathe, his veins pop out more and he seems really uncomfortable.  We hope that he is able to come home sometime next week.  It'd be really nice if they could either do his MRI or recast him before he is discharged but we are still waiting for word on either.

Mother's Day

Okay, so Mother's Day was a few weeks ago...but I just had to share the wonderful gifts the kids made for me.  :)  Ethan helped make these tasty cookies while in respite.

And Lorelei planted this beautiful pansy, tended to it for me (and reminds me frequently to keep it watered - she knows me well that one ;)) and made the lovely card in daycare.

I'm such a spoiled mom!  Lorelei even chose pizza supper despite it being one of her least favourite meals (and best of all? she ate some!).  I swear, I have the best kids!

Cough, Cough, Whine/Groan

These are the sounds which are coming out of my poor little guy.  So far his results show that he has pneumonia in the lower lobe of his right lung.  He has been sick a couple times yesterday and today.  They have restarted his tube feeds with just Pedialyte and we hope he'll be able to tolerate that.  He is still working really hard to breathe but his oxygen saturation is great.  Our nurse was able to talk the Respiratory Therapist into keeping his oxygen at the same level for the day since he is still working so hard and his numbers drop if he does not have the oxygen mask on, so that should help him out some today.

Not Just Sick...

...but admitted again.  Ethan was admitted today because his vomiting and fevers have not improved, they actually got worse last night.  He is on oxygen again and is getting IV antibiotics.  He was having respiratory distress and they were not able to fully assess him so they removed his cast.  After 19 days it left a few pressure sores which will hopefully not recur next time.  It took a couple doctors from the Orthopedic Surgery team to get the cast off.  It was that thick.  Just out of curiosity we had them weigh the cast...it was a whopping 5 pounds!!  It is nice to see his chest//back again but I hope they are able to recast him again soon to make sure the scoliosis does not progress.

Where Does One Buy a Bubble?

We're really starting to think it might be easier to keep Ethan in a bubble!  He's sick again.  :(  He was in therapy all last week (longest time he's been away from us) and we got a call on Saturday morning to bring him in to be seen by a doctor because he was vomiting and had a fever.  Ethan doesn't typically get high fevers so when they told me it was 38.9 C I figured we best get him in quick.  We dragged him off to the ER and were very lucky because the waiting room was pretty empty.  It was one of our shorter visits to the ER as they said he might have a left ear infection, a chest infection or an abscess from the cast and sent us home with broad spectrum antibiotics.  He was fine except for a temperature here and there until this morning when he got sick again.  I brought him in again and his ears still look like they might be infected and we're just continuing with the antibiotics.  If he does not get better within another 48 hours we're to bring him in again.  And tonight he's spiked another fever and was sick shortly after his antibiotic.  We just hope he was able to keep some of the medication down.  Now we're waiting to give him his next dose of Tylenol...

Back to the Back

So, I'm playing a bit of catch up again as life at our house can be pretty busy!  Last month, I took a photograph of Ethan's back pre-casting.  His scoliosis is another one of those elephant in the room diagnoses, which we had hoped would correct itself with seating and bracing.  I have not taken any pictures of his bare back, I guess it is our way of not really acknowledging it.  The 'if we don't see it, it isn't really there' kind of thing.  Alas, it is there and I am posting his before picture in great hopes that we will have surprising after photos.

April 29, 2011 the morning of his casting, I took a few more photographs as we anticipate it might be some time before we see him without a cast...for all we know he may outgrow his clothes during his time with a cast.

Waking up my handsome little man was playing in his crib before we got him out.  We had to be at the hospital for 6 AM and he woke up early for it.  At least we did not have to deal with a grumpy little boy who was ripped from his sleep.

Above, you can see in his lounged position how bad his posture is.  Although his eyes look closed, he was quite awake at 5:30 AM.

This picture is a true depiction of how bad his scoliosis has gotten.  Despite our best efforts, he has been leaning to the right more and more.  We have been trying to prop him from the left (apparently if you prop that side it should force him more straight), but as you can see it is without great effect.  He is also leaning a lot in his custom seat.

Just before his OR time, Ethan started to get really sleepy.  And he came out of the OR rather cranky.  This crankiness lasted a few days until he resigned himself to being in the cast.  He still cries out at night and needs to be repositioned frequently but otherwise is handling it well.  We did have to bring him back to the hospital Monday following his casting to have them cut it a bit to allow his legs to move better.  As you can see below, it is quite long.  Positioning, seating, playing and diapering have become interesting challenges.

The cast is about an inch or more in spots and is mostly plaster of Paris with a coating of fibreglass.  Which is to say, it is HEAVY!!!  We saw the surgeon yesterday and he plans to make the next one a bit more form fitted with less plaster of Paris.  It is a process of figuring out the kinks.  Ethan has a lot more gas issues and is experiencing increased reflux since he has been casted.  Ethan will go into the next two casts one right after the other before he and his skin might get a break from casting.  The surgeon told us after he casted Ethan that his curvature was about 75-80 degrees.  Which is a significant curvature.  Surgery is usually suggested at 45-50 degrees.  We are very hopeful that the casting will improve his back.