Byron Walking!

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Video of Byron walking for the first time after SDR!

Byron is up and walking!

Its confirmed!  He can sit, stand and walk!  His foot is down, his heel is not turned in.  After his hallway walk he's back in bed but we are very happy!!

7:00 am day three - Progress!

Sitting up! (still grouchy)

End of Day Three

Byron is doing really great physically.  The wound looks great, no temperature, his pain is being managed with Tylenol and Tordol (a very strong ibuprofen type medicine).

We moved to a QUIET room on the 6th floor.  It's not private but it's so much better.  No beeping, no alarms, just rest.

Tomorrow is the big day.  The therapists will come and get him out of bed and see how he moves.  We are very excited for that and will take videos.  The plan is still to go up to Blythesdale Children's Hospital tomorrow late afternoon. If not, then on Thursday.   The insurance company has to give the go ahead before we can go.

Meanwhile...

Here's a video of Byron walking to the hospital at 5:45 am on Monday.  So far this is the only "before"  we have of his walking.  The doctor took a really thorough one which I will see if we can get.

Byron's left foot turns in and the heel is mostly up. Over the next month we'll be looking for improvement in these areas and more.

Byron is progressing well... 10:00 am Tuesday

Byron slept through the night and has been able to hold down his breakfast, which was delicious apple crepes - yumm!

They took the 2 IV lines out of his right arm and removed the stabilizing board, which means he can use his right hand again.  He was so relieved.  There is still an IV line in his left hand.

They removed the catheter line yesterday.   He hadn't been able to pee on his own since the surgery.  They were concerned about this but last night at 1am and again this morning he did just fine with the bed urinal.

So most of the worrying things are past us now - eating, peeing, sleeping , moving.  He is still confined to his back with only his head lifted.  Tomorrow they may want to see if he can walk a bit.

I'm not sure if we will leave here tomorrow or Thursday.  The  next step is to move us to a room with doors, windows and walls.  The loud beeping of monitors in intensive care is incessant, and the constant urgency of critically ill children is jarring to the nerves and heart.


Byron is sleeping now...yeah!

Good Night!

He's Finally Asleep

Byron had a big rush of energy just after the surgery.  He ate, watched spongebob and then right around 6 he crashed.  His behavior started to get a bit odd and he vomited profusely.  They think he may be a bit allergic to the morphine.  So the right pain management will be a priority now.

Unfortunately they have moved him to pediatric intensive care which is a crazy place to be when recovering from surgery.  I hope we get a regular room tomorrow.

Once we got him settled here he finally fell asleep.  Fingers crossed that he sleeps through the night.  I will be staying with Byron tonight.  Fingers crossed that I can sleep through the night!

He's Awake and Watching Sponge Bob

He's doing so well.  Having ice chips and and an italian ice.

The Doctor said that they cut 67% of the sensory nerves which is very good.  They found LOTs of spasticity.  Byron's left leg is so loose.  It's incredible!  But he's moving it just fine.  I'm guessing his recovery will go very smoothly.  

Still in icu .  got to go  

Byron is out!

All is well. More soon. We are in icu. He's on Valium and morphine so he's sound asleep.

Almost done!

We just heard that Byron's surgery is nearly finished!  One more hour and he will be out - about 1:15pm.  The nurse said it is going very well.

Update 10:00 am

The nurse just told us that the prep is done and the actual surgery has just begun. 

Waiting now. Be done likely between 12-2.

We went into the operating room to be there for the anesthesia.  Byron struggled a bit - he didn't like the mask.  But he's asleep now and we are at breakfast.
Here's some cute photo's

At the hospital

The "happy juice" has been administered.  Byron is so loopy and happy. This is a little tranquilizer to help him relax. The actuall anesthesia in about 20 min. Surgery will start at 9ish.  

Fun day in New York City

Today we had a fun day exploring New York city with Bob's son Ryan.   We are hoping to get an early night tonight.  We will leave the house about 6:00 am tomorrow and walk the 7 blocks to the Hospital.

Byron's loves the old elevator in the apartment building

Taking the Roosevelt Island Tram - Cool!

Bob, Ryan and Byron on the Tram

Light Show - Grand Central Terminal

Dinner at PJ O'Rourke - gotta fill up because no breakfast tomorrow.

SQUEEEZE!

Subways are loud - but fun!

Aaaaaah - relaxing before bed.

On our way to NYC!

The time for the surgery

A very nice nurse from the hospital just called to let us know about the times for Monday.

Byron, Bob and I will arrive at Morgan Stanley Children's Hospital, aka New York Presbyterian, at 6:15 am and the surgery is at 7:30 am.  No food or liquids after midnight.

The really good news is that we can be there when they anesthetize him and they won't put the IV needle in until he's asleep.  What a relief!

Byron's 1st grade School Photo - Age 6

On Monday, November 18, 2013 Byron will have a Selective Dorsal Rhizotomy (SDR). Of the many thousands of these procedures done since the 1950s, less than one percent are preformed on children with Hemiplegia. In the last five years, top neurosurgeons who perform this surgery have determined that it has enough significant impact on children with only one side weakness, to make the risks worth the positive outcome.

 The following is from the SDR website associated with the St. Louis children’s hospital:

 “Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity. ”

While in New York, we’ll be staying at a lovely apartment I found through www.airbnb.com. It’s only 6 blocks from the hospital so it will be easy to go there and rest.

Dr. Richard Anderson from New York Presbyterian will be performing the surgery. Byron will be in surgery for 4-5 hours on Monday, and then in ICU most of the rest of that day.

 On Wednesday, November 20 he will move by Ambulette to Blythesdale Childrens in Valhalla, NY. This is a gorgeous private acute rehabilitation facility just for kids. All the children spend most of their day in therapy and the rest of the time in school that happens right on campus. Children attend classes on stretchers, in wheel chairs, however they are most comfortable. They try to make the children as comfortable as possible by encouraging street clothes and normal activities. Byron will be there for 3 – 4 weeks. He will be relearning how to use his left leg once the spasticity is gone. They have a pool and many other useful therapy tools. Bob will be there with him staying in the facility for the duration. I will try to update every day with pictures and videos.

 Lots of Love!

Byron - The Imac Series

Byron enjoys using his little imac to play on the Elmo website and a few toddler computer games I installed for him. Recently he seems to have discovered the photobooth application and has taken pictures of himself in just about every style!

Easter 2010

Byron had a great Easter.  At the end of a full day we took a long walk.   We walked from our house down a steep incline with steps, for 1/2 mile.  At the end of the trail is a great playground.  We played there for about 30 minutes and then climbed all the way back up to our house.  Byron walked every step of the way by himself, except for the steepest part on our return trip.   He just turned three on March 28th and we are so proud of him for completing this favorite walk, way earlier than we ever thought he would.  Go Byron! Here's a slide show - (hint - just below the youtube logo, make sure 720p is selected (not 360) otherwise the quality is terrible. You can also click on the the little icon that looks like four arrows facing outwards and watch in full screen - enjoy!)