Merry Christmas to all ...

Little Ambrose has been doing pretty well.  We just got a stander loaned to us and he doesn't seem to mind it.  It is quite a production putting on his AFOs, then knee immobilizers, then strapping him in.  Hopefully it will help him.  Doesn't he look like some kind of robot in it?

Ambrose has woken up crying a few times and I don't know why. It is always out of a sleep.  Did he have a bad dream?  It is so sad because he hardly ever cries.  With his CPAP on he is able to make real crying sounds.  Look for video in sidebar.

Home

We are now home. Ambrose recovered from the anesthesia after a few hours.

The MRI showed that his spine has not gotten any worse and showed no evidence of any damage to the spinal cord.  They may want to do some flexion/extension studies as an outpatient.

Ambrose did well at the hospital then needed a huge amount of O2 when he first got home and has since settled back down.

Spinal Exam

It is now 10:30pm and I am waiting for Ambrose's paralytic to wear off so he can come off of the ventilator.  This was necessary to keep him extremely still for a 90 minute MRI of his head and C-spine.  Ambrose has a couple of vertebrae near the top of his cervical spine that curve dramatically forward causing his spine to make an "S" and possibly impinging on his spinal cord, which could potentially interfere with breathing.  It was looked at when he was a week old because Sophia had had a similar issue.  Her C1 vertebrae was heart shaped. She also had a tethered spinal cord, meaning the cord, which is usually free floating but hers was attached at the bottom.  Also both of them have problems throughout the spine where none of the vertebrae fit neatly into each other. They are supposed to stack like tuna fish cans and theirs just don't.  On top of that they both have scoliosis.  At the time it was felt that it didn't look as bad as hers.  Last fall he had an emergency quick brain MRI  to rule out hydrocephalus.  It also showed the C-spine but no one was looking at that.  A few months ago his neurologist was reviewing his files and saw this and was concerned with how bad it looked and said it looked much worse than the earlier study.  I was very concerned to see if it has continued to get worse.  Earlier today, the neurosurgeon came to talk to me as she is the one who will review it and who also followed Sophia's spinal issues.   She said his spine looks "really bad" and "worse than Sophia's."  That comment is based on last year's quick brain (which doesn't provide as detailed information since it is very brief).  I was a little shocked to hear that.  She showed me the images on the computer and yeah, it's really curved forward in a spot that would make it extremely difficult if not impossible to ever correct.  (Not that we'd necessarily want to pursue that).  It might be something that could benefit from some type of bracing but we have to wait and see what the images tell.  

We should be able to go home tomorrow but want to wait to talk to neurosurgeon about this and she has some surgeries tomorrow so she wasn't sure when she's get here.

It's now 11:15 and he is still on the vent.  They tried twice taking him off and he wasn't ready.  I had hoped they weren't going to have to give him paralytics but the images were initially too blurry as he was still moving.  As you can imagine they would completely supress your respiratory drive and require you to be ventilated.  I think I'm going to be up late as I really want to see him come off the vent and breathing on his own again.  They told me it can take up to 2 hrs to wear off and they gave it to him at 9:15.  It's been 2 hrs. now.

Some Hospital pictures

Ambrose back in PICU

Darling Ambrose, while very stable most of the time, has had several unexplained desats (drops in blood oxygen saturations indicating he's not getting enough O2) which have occasionally required bagging (manual ventilation by ambu-bag) to get his sats back up. Then once he was over it, he was absolutely fine or even better than before.  Last night, or rather this morning at 12:45, he had an episode which did not resolve with bagging.  Bagging would bring his sats up to 100 but when I would stop and switch him to CPAP with maximum oxygen (10 L- a lot!) his sats would fall again.  We bagged him off and on for 45 min and, impending blizzard on the way, headed out to the BMH(my lovely local hospital, and employer) ER.  Of course by the time we get there he is stable and able to start coming down on his O2.  Despite being stable I feel that something is obviously going on and want everyone to get their heads together and figure this thing out.  So by the time the DART team arrived at BMH it was 4:15 am and I had to drive myself up to DHMC in the snow.  Boy was I tired.  We arrived at 5:30 am.  He has been doing wonderfully ever since.  Thank God!

I have requested numerous consults ( quick brain MRI and consult with neurosurgeon  previously scheduled for next week to check his C spine "retrolisthesis" hopefully will occur tomorrow), scope by ENT doc to check trach accompished, (looks OK. I had thought the extra long length of his custom trach was causing the coughing he experiences often after moving and sometimes precipitated spitting up.  He is willing to try a slightly shorter trach with the same custom angle.), consulted with pulmonologist, consulted with GI doc - will be doing an upper GI tomorrow to look at degree of reflux and possibly get info about if his Nissen fundoplication (which should prevent reflux) has loosened up.  If that doesn't give enough info may then persue a PH probe test.

Hopefully he can go home in a couple days.  He has some crackles and coarse breath sounds but all labs and vitals seem OK, no fever, no pneumonia.  Elevated CO2 levels.  Will try higher peep CPAP tonight and repeat blood gas in the a.m.

Ahhhhhhhh.  Hope to get some sleep tonight and hopefully some ideas.  I fear we may leave with several possible theories but no answers or solutions.