...Still on Oxygen...

So of course that means we are still in hospital.  We have been able to reduce Ethan's oxygen needs down to about 1/2 a litre without much issue.  Yesterday we were as low as 1/4 litre but have since had to bring it up a little.  The doctor said that we are just waiting for him to be fully weaned and he can go home.  He said we just need to be patient and that it sometimes takes a bit. 

I took the below picture on March 10, to show how he is pulling at one of his probes.  I guess that one was really itchy to him as he picked at it for a couple days and kept trying to scratch.  It is no longer a concern for him because the probes came off earlier this week.  Now he just has the marks of where they were on his chest.

This week Ethan has been feeling well enough for us to get him out of bed so he can play on the floor.  He really enjoys his floor time, and it normalizes things for him.  He was even kind enough to hold his hand out of the way so I could get a picture of his face while he played.  ;)  While playing on the floor one day he surprised me with his smarts.  He was using a pop up toy and I asked him "Where's the cat - meow?"  Wouldn't you know it, he goes right to that part and pulls up the cat?!  So smart!  Oh you may notice as well, he's IV free again.

Two nights ago while Clayton was waiting for Ethan to go to sleep he took a picture of him in this max-relaxed pose.  I swear if it weren't for the oxygen prongs attached to his face he might look like he's chilling at home.  I do however note his shall we say poor posture from his scoliosis.

Be Wary of Your Thoughts!

So, this morning I wake up on my own (unusual given how exhausted I always feel) and think maybe I should check out the time to see how long I can lounge in bed before getting up.  What's this?!  The alarm clock is flashing.  Oh no!  We've lost power, I bet it's late.  YUP!  About 8:30 AM, quick light on in Lorelei's room and telling her to get up.  Get the pets taken care of and check up on Clayton, who is at the hospital, to let him know I'm running late.  Look outside, and what the?!  Yesterday, most of our previous snow had melted...but this morning the ground and car and backyard things are COVERED!!  Buses aren't running and I decided to keep Lorelei home.  In discussion with a friend I found out that the roads are pretty slick and the snow is very heavy.  Good choice to stay home I guess.

Alright, not the end of the world...I'll work from home and we'll see about heading into the hospital later.  I feel like dirt anyway.  Seems to be common side effect, anytime Ethan gets sick - I'm not far behind. 

Lorelei and I get through the day and since they're calling for freezing rain tonight I decided to head out and shovel the driveway so it isn't an ice pack when I go to bring Lorelei to her early morning swim lesson.  Wow, my friend wasn't kidding!  That snow is H-E-A-V-Y!  Great, just what my back needs!  This is the third time I've had to do a lot of shovelling while Ethan has been in hospital for different admissions.  It takes about 3 scoops to get close to the driveway in one shovel sized spot.  The snow is very moist and packs really well...probably great snowball/snowman weather if you're into playing outside in wintertime.  I get to thinking and grumbling about being out shovelling snow and how miserable this winter has been (with so many admissions for Ethan) and how I can't wait for it to finally be over.  I say to Lorelei, "I guess it is a good thing your brother is in the hospital right now.  It's not like we'd be able to get him there in a hurry if he wasn't."  I try to think of positives.  Then I do it.  I go there.  I don't know why I did.  I jinxed us!  I thought, "well at least Lorelei hasn't been sick much this year."  An innocent thought, no?!  NO!

After I get her to bed, I take a warm bath to try and soothe my aching back.  Then I hear her whining and coughing a bit.  This is not like her once she's asleep she's out good.  I still hear her making noise and I figure she must be having a dream.  Then I hear it...that unmistakable sound...someone has thrown up.  It sounded a bit like the dog, perhaps it was him.  Then I hear it again.  I call out to her, "Lorelei?  Lorelei are you okay?  Lorelei?  Did you get sick Lorelei?  Mommy's coming, just let me get out of the bath."  I turn on her light as I enter her room...but the odour tells me it wasn't the dog.  She's gotten sick on her pillow and is still sleeping.  That's never happened before!  I wake her and get her to the bathroom.  She's been sick on herself so I have her climb into the tub (that I was just draining) to clean up.  She is shivering and whining and saying she hates sicknesses.  Me too!  Now I'm up late again because I've been in several times to check on her.  I've set up the baby monitor we used when she was younger.  We haven't used it in forever with her...but I want to be able to hear how she's doing.

Have I mentioned, I'm so done with winter?

Another Hospital Stay, Another...

...dumping of snow!  And only me home to shovel it.  Thankfully it was light and fluffy snow this time and it fell on a Sunday (March 6).  After I got to the hospital and switched shifts with Clayton he went home with Lorelei and they had fun playing in the snow - even though it was not snowman weather.  (Lorelei was quick to point this out to me.  Although she informed me that because she could make snowballs she should have been able to build a snowman since they are just bigger snowballs.  No good argument for that kind of logic.)

Four days into Ethan's hospital stay, this is what he looked like.  (Can you tell I finally remembered to bring the camera?)  Still requiring lots of oxygen, he was so tired from working so hard to breathe that he willingly wore the oxygen mask in addition to the nasal prongs.  After the first couple days, they turned off the oxygen to the prongs but kept the mask on.

But the next day he was feeling better and we had to switch back to the nasal prongs and the mask became his blow-by.  That night we still had to use the oxygen mask because he was not able to keep his oxygenation high enough with just the nasal prongs and blow-by.  Clayton said it was a rough night because Ethan kept waking up and yelling about the mask.  Although he was awake for this photo Ethan was still sleeping a lot.

The following day Ethan was much more himself with longer waking periods.  He was happy to see me, smiling and reaching for me.  I was daydreaming and had my cup within range and turned around to see him reaching for it.  I just had to grab a photo!  He kept trying to put it to his mouth.  So cute!  And somewhat unexpected given he does not drink anything by mouth.  Each day he seems to get stronger despite still requiring lots of oxygen.  The mucus in his lungs has been breaking up so he sounds worse and needs more suctioning, but it is a good sign because he is able to move the mucus on his own.

As Spring Approaches

It signifies the end of flu season - typically by mid to end February.  The end of March marks the end of Respiratory Syncytial Virus (RSV) season.  Of course before the end of that, Ethan just had to catch himself one of the RSV subgroups.  :(

In a healthy person, RSV just leads to mild cold-like symptoms.  Did you note, I qualified "in a healthy person"?  For preemies, those with chronic lung disease, those with immune systems that don't work so well and those with certain forms of heart disease it can be more serious and lead to hospitalization.  Ethan qualifies under at least two of the four high-risk groups, but likely three of them.  (He wasn't a preemie!)  Of the 10 symptoms listed for this virus...Ethan has eight of them.  It is highly contagious and the virus can live on your hands for half an hour or more and up to five hours on surfaces.  Symptoms usually start 4-6 days after contact with the virus.  The only 'treatment' is to monitor, provide oxygen and IV fluids...and then you wait for them to get better.  Ethan's oxygen requirements have increased since yesterday but he is still able to stay on the ward...hopefully he'll soon turn the corner on this and be well enough to come home.

The 'funny thing' about RSV is there is an immunization they can give for those in the risk group to protect/diminish effects of RSV.  Ethan used to get it.  It is typically given to high-risk groups up to age 2.  In previous years, with enough documentation...you could get it for a chronic child after 2.  I've heard it costs the government $7,000 for the season, an immunization is required each month from about September to March.  This year, they deemed it too expensive and declined EVERYONE OVER 2.   I was just told they figure each patient costs $1,200 per day in hospital.  If you average that out over Ethan's typical stays...this visit will cost more than double the vaccination cost.  Somehow the math doesn't seem to make enough sense to me!

"....Sooooo.....what would be the highest they would want to see Ethan's respiratory rate?"

"Just a sec...we're not busy right now, why don't you bring him in so they can see him?"

This was how part of my discussion went with Ethan's paediatrician's office Wednesday night.  On the way into their office I hear Ethan vomiting and sounds like choking on it.  I kept trying to reassure him, focus on driving, and trying not to speed too much...I barely get into the parking spot and jump out of the car to remove him as quick as I can.  They're expecting us and trying to help me in.  We're not there long and the doctor starts listing his concerns...he's tachycardic (fast heart rate), tachypnic (working hard to breathe), pale, lethargic - okay this one may have been excusable given it was past his bedtime - and he should be brought to the ER.  "Do you think you can safely get him there?"  My mind goes into hyper drive...okay what all do I need to do to make this work?  Lorelei is already in bed, I can't really go on my own with him...someone needs to watch him...  Then the wonderful people that run the clinic offer to drive me there in my car.  Of course I take them up on this offer and leave arrangements for Lorelei's care up to Clayton.  I'll call when we get in to see what he needs to bring...

On the way to the hospital, Ethan falls asleep and I keep checking him to be sure he is still breathing.  A hard task given that he's covered in winter clothes, a blanket and has a make shift bib around him.  I can't really tell, so I put my finger by his nose.  Yup warm breath coming out, all is good.  Then he raises his left hand all of the sudden.  I figure he is just annoyed with the makeshift bib, so reassure him, move it out of his way and notice...OH, OH!  His eyes are looking up, and he's not focusing..."Ethan?  Ethan?  Ethan, it's okay we're almost there.  Ethan?"  Quick glance at the clock and as we pull in in front of the ER and he seems to be refocusing.  I hurry to get him out and of course try the main entrance with a sign saying use the one next to it.  Never a dull moment!  We get buzzed in to waiting room and the triage nurse asks those ahead of me and me what brings us in.  Of course there are the usual suspects, vomiting...diarrhea...  I produce a paper with the doctors concerns and Ethan gets into triage first.  We're only there moments (mainly long enough for a weight) and they brought him straight to a bed where a team was around him right away.  I look around, there are a lot of faces we know...this is somehow comforting to me.

REWIND - For about a week leading up to Wednesday, we were noticing Ethan seemed to be fighting something.  Likely a cold we thought...  Wednesday was my day off this week so I could tend to my well being and an appointment (at the house) for Ethan.  As Clayton is trying to get Lorelei out the door and to work, Ethan throws up....here it comes, we'd been expecting it...  I get him cleaned up and leave him in care as I head out to my appointments.  Of course on the way to one, I stop to drop off some broken mic-keys (might as well multitask since I'm out anyway).  I get a call, "Where's Ethan's Tempra?  He has a fever."  Great!  I get home later and he's not feeling himself, he's been getting his Ventolin puffers and Tempra every four hours but was able to do some of his therapy in the morning.  Just before Clayton gets home, he vomits again.  Okay, no big surprise he'd been threatening to for much of the afternoon.  Then after his bath and into bed he vomits again.  I'm watching him work harder and harder to breathe...time to call the clinic...

Back to the ER - Why is it comforting to recognize staff?  Well that means they may have a bit of a memory of Ethan (they recognize us as well), that means they know we won't come in without a really good reason (no real worry there - Ethan has many of them worried by how he presented).  They go straight to oxygen mask and start an IV - another ordeal of trying to dig for a vein which really upsets him.  His oxygenation goes up to 100%.  I start to wonder, there's a 6 hour wait list to get into the ER, do we need to be here?  We're able to move him to blow-by air, he's still doing okay...then he falls into a deep sleep, and his oxygenation falls.  :(  I guess there is no reason for guilt (okay happy guilt, but some guilt all the same) that we cue jumped.  We'd already been told to get comfortable.  They question his neurological state, and decide to wait based on our suggestions that it seems to be typical with respiratory concern for Ethan.  The ER is busy, the Critical Care Unit is full, the floors are pretty full...  We get admitted at about 4:20 AM.  Not bad, as far as waits go...

When I checked in with Clayton this morning, he said Ethan's night was anything but good.  He did well until they checked his O2 at 3 AM.  Then it really hit the fan.  He was put on nasal prongs 3 litres, and 60% blow-by and he started getting a fever again.  By the time I got to the hospital, he was only on 50% oxygen and sleeping.  He has since woke up (somewhat) and is working really hard to breathe.  We've had lots of visitors - nurses, doctors, respiratory therapy...  Hopefully he starts to bounce back soon.

And the Verdict is...

...no surgery.  At least not yet.  We're going to try casting him first.  To cast him, they will put him in traction (kind of with fabric to straighten him) and cast his chest.  The cast will be on for a couple months at a time.  So he will not be able to get wet, and will be back to sponge baths.  The hope is that at the very least the cast will stop his spine from getting worse.  At best, it might help straighten him a bit.  It is kind of our last option before surgery.  His spine seems to have gotten worse again, and it not only has the classic 's' shape but is also twisting as well.  We should see within the first two months if it is having any effect.  It seems our surgical option is to have him roded.  To do such, they would anchor to his ribs and just above his hips and try to straighten him with rods.  They would have to be extendable and would require surgery every 6 months to extend and force him straighter.  Although the extensions are minor, the major problem with this option is that each time they go in it opens him up to the risk of infection.  They just need to order in the supplies for the casting and book a date.  They figure he should be casted within about 4 weeks.

More on Three Years Ago...

I intentionally kept quiet on the blog the past few days because it took this long three years ago before Ethan was sedated, MRI'd and had a biopsy of one of his growths (the doctor was able to take the full nodule from his neck, reducing his tumour count).  Four days of waiting for them to start working towards finding answers was torturous for us.  The results took a while to get as well but I'm not going to hold off that long to write again, as honestly I do not remember how long we waited...I can say it felt like FOREVER!!!  In the end, they were able to tell us that he has a large fluid filled cyst at the back of his head which pushed the rest of his brain forward as it consumed the space.  The MRI also showed us that he had eight tumours (including the one that was biopsied), most of them were external but he had a significant one inside his chest in the left upper lobe area of his lung.  It was just above his heart but under the aortic arch.  His biopsy results showed the tumours to be Infantile Myofibromatosis.  ???  I can tell you it took a while for us to learn how to say that...let alone spell it so we could research it online.  Infantile Myofibromatosis (IM to some), is a rare condition (by 1997 there were 231 documented cases since the 1960's) which presents with benign muscle and fibre tissue tumours.  The natural progression of these type of tumours is that they grow big really fast and then typically have mass cell die-off over time.  I will post more into the ABC's of E page regarding this condition at a later time.