Still in Hospital

We are now one and a half weeks into his stay.  Last weekend Ethan tested positive for c difficile.  It is a common bacterial diarrhea infection in hospitals and long-term care facilities.  Ethan's case was likely brought on by frequent antibiotic use.  If not caught early enough, it can cause more serious intestinal conditions like colitis and in rare cases can be fatal.  Because of all the antibiotics he's been on, the healthy bacteria in his colon got wiped out and allowed the c difficile to thrive.  Due to the risk of colitis, we have had to hold his probiotic because if the infection gets into his blood stream it could then become fatal.

They've told us it is a spore and when handling his diapers, etc we have to wash our hands with soap and water to kill the bacteria.  It cannot be killed by the hand sanitizer.  The spore is able to live for long periods on surfaces.  They have to come clean the room twice a day in an effort to control the risk of outbreak; once to kill the spores with a peroxide mixture and the second time for the usual cleaning.

To complicate matters a bit, Clayton has gotten an infection and has been put on antibiotics.  He will not be doing any of Ethan's care for at least 24 hours from the first antibiotic dosing and it may be longer depending on what the doctors suggest.  We do not want to risk him sharing his infection with Ethan nor Ethan sharing c difficile with Clayton.

And We're Back to...

Rhinovirus!  That is the first virus that brought Ethan back to hospital in September.  It was the one that caused his first seizure and our first trip to the ER by ambulance.  And brings back memories I'd rather not have to live through again.  Seeing him stop breathing like that and turn blue then grey...really nothing a parent should ever see.  Thankfully he restarted breathing and hasn't frightened us in that way again.  It is also when I started blogging about him.  Maybe now that we've come full circle he will be well again for a longer period?!  A girl can hope, can't she?!

Some Kind of Record

It was 1 week, 1 hour and 45 minutes since Ethan's discharge from hospital and I was sitting in the ER triage with him tonight.  He is being admitted again for respiratory distress.  :(  They think it might be another viral infection but we won't know until his cultures come back.  He wasn't looking too great when I left (his O2 needs were at 3 litres) and he has his whiney I feel like dirt sounds again.  :(  Please keep him in your thoughts that he recovers quickly from this.  We were hoping to recast him next week...they will likely say that we really need him well before that can happen...

The Good, The Bad, and The Unknown

Okay, maybe I should say the great...Ethan is out of hospital again.  YEAH!!  He came out on Monday, one day shy of 3 weeks!  He is currently in therapy and not happy to have us only pop in for a visit yesterday.  :(  We have to do a new therapy with him called breath stacking.  They are not trained there yet, so we have been doing it once a day.

Breath stacking equipment at the hospital. (Yes, that is a resuscitation bag - modified for our use.)

The Bad - Ethan was not able to get his MRI, they were too worried about sedating him with a current respiratory issue.  They would like him to be well for 2-3 weeks...which if you've been following this blog, then you likely know that could be a difficult feat to reach.  Anesthesia also isn't keen on the idea of sedation for casting...but I was able to discuss this with our surgeon and he would like to recast in a couple weeks.  :)

The Unknown - Potentially a bit of bad as well...IF the surgeon is not able to see more than a 5 degree improvement with the next cast then he wants to revisit the surgery discussion.  When he laid this option out to me our conversation went like this:

Me: The youngest you've done surgery on is 4, right?
Him: Yes.
Me: Ethan isn't 4!  He only just turned 3.
Him: Yes, but he's a pretty big boy.
Me: Okay, so what is the youngest you can fuse (the spine)?
Him: The youngest I like to do is 10 years old.
Me: So, that's 14 surgeries.
Him: Ah, about that yes.  But the extension surgeries are only 1-1.5 hours long.
Me: Yes, but that is 14 risks of infection and we know that he is prone to infection.
Him: Ethan has proven to be a challenge in the past.

To cut the surgeon some slack, I did acknowledge that we know he will likely have to have fusion surgery to correct his scoliosis...we would just like to put it off for as long as possible.  He also said that there has been success with casting on older children.  The only limiting factor is that Ethan's scoliosis may be a bit more rigid.  Please send some good thoughts for the next casting.

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.