And Now we Wait

Ethan had his MRI yesterday (thanks for all the good thoughts for him).  They were able to do it a lot quicker than they thought they would and without any concerns.  They were even able to do it without knocking out his last remaining lower front tooth.  Now we just have to wait for the results to be read, for the doctors to get their copies and for an appointment to see them.  I'll be following up with everyone in the New Year.

I hope 2011 brings joy, love and good health to everyone!

It's Officially a Concern...

This morning we made the trek to the children's ER.  Due to the holidays, we couldn't get in to see Ethan's paediatric dentist nor his paediatrician so we spent the day in the ER instead.  This morning while cleaning his teeth, I noticed he had ANOTHER loose tooth.  Given his MRI is supposed to be on Thursday, I wanted to be sure the loose tooth wouldn't cause a problem with the MRI and to see if they might be able to guide us to some answers as to why he is losing so many teeth.  The dental resident pulled his tooth as it would have maybe lasted until sometime tomorrow but it would likely be swallowed and we wanted to ensure it did not go into his lungs.  It looked just like the one that fell out on the 24th, they have no roots and are hollow.  This should not be happening to someone Ethan's age and he did say we should get in to see his paediatric dentist as soon as they reopen in the New Year and have x-rays done.  Once we have the x-rays we'll see if his adult teeth are under the gums.  Hopefully we'll also get a clue as to what is going on and will be able to proceed from there.  He only has one tooth left of his bottom front four and we don't know how long that one will hold on. 

Happy Holidays

We had a lovely Christmas.  We took the morning opening presents and then enjoyed a tasty meal prepared by one of our neighbours.  Just before we dug into our meal, another tooth was lost...but at least this time it was Lorelei's and at an age where it is expected.



All Ethan Wants for Christmas is his Two Front Teeth...

Do you have any idea how few dentists work on Christmas Eve?  Okay, so I didn't call around a whole lot (kind of hard to do when you would prefer the dentist has some prior knowledge of your special needs child), but I did speak to the children's ER, Telehealth and left messages with the paediatric dentist's emergency number and his paediatrician's office.  I was cleaning his mouth after his steroid inhaler and noticed blood.  The tooth was just barely sitting in the socket for a while and then he gagged a bit and it came loose.  We were able to save the tooth this time.  Once the paediatric emergency doctor called back, he said he wasn't too concerned about this second lost tooth.  And if Ethan were...say 2 years older I wouldn't give it a second thought either.  As it is, now we need to see if there is a medical reason that his teeth are falling out and not one due to adult teeth coming up.

Oddly the crooked tooth that I thought would get too loose...seems to be well anchored.

There is no root to the tooth, but I'm not sure if that is the way the front teeth are since Lorelei still has all of her baby teeth.

Holiday Gatherings

With Ethan having been in hospital, we essentially missed all of the Christmas gatherings we'd been invited to this year.  He did get out of the hospital in time for Clayton to attend Lorelei's JK/SK class performance.  They sang a couple carols and then had a bit of a reception in their classroom.  From the photos he brought home, it seems she had a great time and participated nicely.  You've heard of Dasher, Prancer, Vixen, Rudolph and their posse...but now I'd like to introduce you to Lorelei the smiley reindeer.  And one of the cutest reindeer I've ever seen.  ;) 

Home Again!! :)

I haven't had much of a chance to post before today, but wanted to let everyone know that Ethan came home from hospital on Thursday afternoon.  He has been a bit gooey sounding but we hope he'll do well for his preadmit appointment on Wednesday.  We are keeping a low profile and not doing much or going anywhere really to try to limit his exposure to germs prior to his MRI.  I haven't really snapped many photos since he has been home, but thought I would share the following from his last day in hospital. 

The above photo was taken while awaiting an appointment with his neurologist.  His appointment went well, the neurologist thinks Ethan is stable from a neurological standpoint.  (I love this picture of him!)

Notice the nifty new pj's they have in the new children's section of the hospital?  It's really nice not to see them all in the jailbird (or old man) stripped pj's.  Mind you when we started putting him in the blue pj's all I could think was "Bah-naw-naws in pee-jaw-maws are coming down the stairs".

As we were waiting for his feed to end so we could head home with him, we noticed just how tall he's become.  See him picking at the TV/computer/radio/light control with his left foot?

Hospital Move

All of the paediatric floor was moved today into the new hospital.  Ethan's wing was the last to be moved.  He went from a private room that looked like this:
 

To a private room that looks like this:

I'm not sure you can tell, but the room is quite large now.  That monitor by his bed has many uses.  It is a TV, has the Internet, a phone, plays the radio, has basic games, allows doctors to call up patient information and controls the lights in the room.  The bathroom is large and accessible which is really neat.

They think Ethan is experiencing a continuation of the Bocavirus.  It seems to be common for medically fragile children who catch Bocavirus to go from really poor health, to seeming better, to mild regression in health.  Currently, he is just receiving IV fluids but that will be reassessed later today when they might try him with pedialyte before gradually progressing to his usual feeds.

Day 11...

...and still in hospital.  :(  Ethan was to be discharged this morning but seemed to be feeling off and ended up vomiting six times.  He is back on IV fluids, and not allowed anything by g-tube.  We're joking he wants to be part of the hospital move (they built a new children's hospital and the move is tomorrow), or it is because yesterday the Premier was there distributing Christmas gifts and he wants more...  But in all honestly, our goal right now is to get him healthy enough for a scheduled MRI on December 30th which will tell us what our next steps will be regarding both his scoliosis and the left pulmonary artery/lung.  Please keep your fingers crossed he is able to have the MRI so we can have some more answers.

Lorelei Goes Curly

Lorelei had her first haircut at a regular hair salon a few weekends ago.  The hair stylist did a wonderful job.  Lorelei wanted to have curly hair, so she gave Lorelei what she asked for then spoiled her with sparkles in her hair.  Lorelei didn't want to have her bath that night because it would take away the curl.  She kept trying to convince me to buy a flat iron to duplicate this look...I did not want to let her know mommy isn't so great at hair styling so pushed the angle that it can be something special they do at the salon for her.  ;)  She sure looked cute!

Snowed In

For the past few days we've been snowed in.  Our city has had a crazy amount of snow.  I woke up on day two of what they're calling 'Snowmageddon'.  In the first photo you can see how high the snow is in the back yard.  There's about 2 feet on all the patio stuff, the trampoline is almost 1/2 full, the swings are buried and you can't really tell but Tas (the dog) wasn't really getting out to do his business.  The back stairs were covered with at least a foot of snow and he had to mountaineer his way up.  When I went out last night to free him a path, he'd already started one for himself.  All I could see was his tail wagging in the air (kind of hard to make out since his tail is white too).  The icicles were starting to melt in the sunshine and the big one dripped water into my eye.  Trying to knock them down, one bounced off my cheek...they sure can hurt!  Lorelei wants to play in it but has forgotten her snow pants at school so hasn't been out to play in the snow yet.

The snow on the car was so high that it was about 1 foot above the kitchen window.  My neighbours thought it was a pretty neat sight to see.  Thankfully, my neighbour and his son came by to help dig me free.  They did a GREAT job!  And spared me an even sorer back than I already have from the shovelling I did on Monday afternoon.  I banked the car in the driveway and needed help getting it off the mound of snow I'd stopped on.  Of course all this snow meant I wasn't able to get to the hospital to see Ethan or Clayton.  Thankfully the road crews of London and surrounding municipalities pulled through to clear the roads sufficiently for Lorelei and I to visit the boys.  Were just not sure how long we can stay since more snow squalls are on the way...  This is what greeted us for the first couple hours of our visit.

When he finally woke up I got this...

My little cutie is doing better, they dropped his oxygen again.

He's been staying at 0.5 litres and holding decent statistics during waking periods.  He was dipping lower while sleeping, which is quite common.  :) 

Daddy living on coffee and hospital cafeteria food...at least until I dropped by today with real food for him.

Lorelei was glad to head to Tim's too because she got to enjoy a donut.  Of course she wanted the messiest one and had to wash up after.  Here she's posing in the bathroom door.

What in the world is Bocavirus?

I can tell you some things about it....it is what has brought Ethan into the hospital again.  It is the new 'it' virus and for the majority of us, it is just another strain of the common cold.  But for those with less healthy immune systems it often means a hospital stay (just like RSV).  We brought Ethan to a clinic because he hadn't been wetting diapers much and was vomiting.  I was worried he was starting to get dehydrated.  When we got there, the doctor was more worried about his O2 stats so she sent us to the ER.  Good thing too, as he got much worse through the night.  At one point they were giving him 100% oxygen (with nasal prongs and blow by air) and he still wasn't able to keep his numbers up, they worried he would have to be sent to the critical care unit and were talking about intubating him.  Which would be a 'normal' fix...but not a task easily achieved with Ethan.  He cannot be intubated, and hasn't been for his past surgeries or medical tests.  Thankfully, after many treatments and several last resort meds, Ethan was able to keep his O2 above the 90 mark with the help of oxygen.  Every time he went to sleep his stats would plummet.  We were in the ER for about 20 hours when we were moved to the paediatric floor because they were able to switch off his blow by oxygen and a bed became available.  They have since been able to ween his O2 dependency to 1.5 litres (down from 3 - which is the most they like to give with nasal prongs).  He developed bronchiolitis (from bocavirus) and the mucus in his lungs is too thick for him to move so in addition to all the meds they're giving Ethan saline treatments and are blowing humidity in his face.  It is hard to see him having such trouble, usually he is able to cough up what bothers him and hasn't really require O2 since they weened him in the first month of his life. :(  On a bright side, he is starting to feel a bit better...but we might be here for a while as he fully recovers.