Sunday, September 24, 2017

Jesse 4 weeks post surgery

We are now 4 weeks post surgery.

Jesse is doing great and acting like his normal self.  The redness in his eyes was practically gone at week two and he's so happy to be back to school and playing with his friends.

Given we are pretty much healed, it's a good time to evaluate how effective the surgery was.

His chin down tilt is completely gone. Yay!  This was the one he used most often.  So we are very happy about that.

His left turn is mostly gone (i'd say 80% or more) but sometimes he still does it.  Habit?  Maybe.

What we do notice is that he still has a left tilt (left ear to left shoulder).  Remember when I described the surgery and said that we only operate on 2 of the three eye muscles?  Well the tilt is mostly corrected by operating on that third muscle.

Where does that leave us?

Well, we are going to wait and see.  Jesse goes for his follow up in two weeks but I know in my heart we aren't ready to jump into surgery #2 yet.  We want to wait and see how he develops.  If there's anything these last two years has taught me is that we don't have to rush into anything.  We will likely do a second surgery anywhere between 6 months from now and 2-3 years.  But heck, maybe it will be 10 years.  We just have to see how he adapts, how much he uses that null point.  We constantly weigh waiting to see if his null point changes vs wanting to do surgery as young as possible (pre-kindergarden).  Learning from my older son, they really get into writing in pre-k around age 4, so likely that will be our next driver.

left head tilt

Thank you for following along and I hope that these blogs have helped.  I anticipate this will be the last for a few months until there is something notable to write about.

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Jesse has eye surgery - Days 3 - 7

Heading into day 5 now, and Jesse has been a trooper.  He isn't rubbing his eyes much and they are healing well.

Day 3 - 2 days post-op

Day 3 we visited Dr. Granet.  This is now 2 days post-op and we were eager to see if he would be cleared to go home.

First, just let me say again how much we love Dr. Granet.  Yes, he's usually running late.  A lot late.  Several hours.  But he spends so much time with his patients.  On this day he was in surgery all day but he was gracious enough to see us afterward.

We spent nearly 45 minutes with Dr. Granet going over the procedure, seeing how Jesse was healing, talking about the next few weeks, and 'worst case' scenarios.  He explained that he only cut and reattached the muscles but he didn't remove any muscle, so anything he did could be undone.  He also didn't touch the obliques, so if Jesse still has any type of head turn, we can go in and use those muscles to correct that.

I did make note of my concerns that his eyes don't seem in sync with each other.  He looked and when Jesse is looking straight on they are aligned well.  As for looking side to side, we just have to wait and see how they heal.  The left eye is certainly more "tight" than the right and you can tell especially if he looks to one side or the other.  The eyes go immediately out of sync.  How that heals over the next few weeks will let us know if there are any issues we have to go in and fix.  (probably more socially than vision).  He does not have strabismus (where one eye is pegged inward or outward), but if the movement doesn't sync up for side to side vision, we may explore our options for a second surgery.  We knew going in that was a possibility.

As for Jesse's null point, those are pretty well gone.  He hasn't looked hard to the right or chin down.  So that's awesome!  That was the main thing we wanted to correct.  Again balancing eye movement with null point.  Sometimes you can't have it all.

so brave.  first time using the machine.

Day 4 - 3 days post-op

I made a short video showing Jesse's eyes at the end of day 4.  As you can see, the horizontal movement is still there and probably will be to some extent forever.  Nystagmus surgery doesn't always stop the movement.  It may dull it down, but the goal of the surgery to correct the null point(s).  To make it so his best vision is facing forward.  I always said if his null point were to the front I would never do surgery just to correct the oscillation of the eyes.

His left eye still won't open as far as the right and the eyes are still very red.  As for how Jesse reacts, he honestly couldn't care less.  He is happy, he's playing, he doesn't notice except for an occasional rub which Mommy reminds him not to do.  He will still have the eye ointment for the next 5-ish days.  (applied at night when sleeping, so there's no fuss)



As a reminder, here are some pictures of Jesse before surgery.



chin down as far as it can go to see what's in front of him

looking for pasta in a sea of vegetables

using the right null point


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Jesse has eye surgery - Day 1 and 2

Jesse had his eye yesterday and I tried keeping good notes about my feelings and his progress.  I know that I found it invaluable when others who've been through this shared their experience and I want to provide another data point for other parents out there.  But I also want to capture what this is like in case we have to go through it again (praying we don't).

Surgery Day (Day 1)

(As an engineer, I can't help but wonder if Surgery Day is day 1 or day 0.  But that's a completely different post for another time)

5:45 am

We are dressed and ready to go.  I'm looking over at the bed watching our sweet boys sleep so peacefully next to each other.  I wonder if this is the right decision.  Are we right to do the surgery?  I'm scared.  Scared his eye will be misaligned as a side effect.  Scared it is unnecessary.  After all, he gets on just fine today.  Yet, I look at pictures of him watching his ipad and I see his extreme head turn.  His struggle to hold his neck at a weird angle (right or down).  I know this is the right call, how could we not try to help him?

My fear now turns to the cough he's had for the last few days.  His lungs sound clear through a stethoscope, but that's my non-doctor opinion.  It makes me nervous the anesthesiologist will not clear him for surgery.  All this waiting, all this time.   I hope he's well enough.

7:15 am

We are in the waiting area and all changed and ready to go.  Jesse is wrapped up with his Minnie and his "de-de" (blanket).

The anesthesiologist checked him out and was completely unfazed by his cough.  Phew.

He is scared but so strong.




7:20 am

Jesse is given some liquid medicine to help him calm down and relax.  Within 10 minutes he's completely loopy and out of it.  He heads back around 7:30, Mom is crying but Jesse seems okay with what's going on.  Dad is holding it together and Max is unfazed.

9:20 am

Waiting is HARD!

The surgery was supposed to be 1 hour plus time on both sides for anesthesia.  He was wheeled back at 7:30 so we are approaching the 2 hour mark.  I'm getting pretty nervous now.  I'm trying to play with Max to keep my mind off it.

I guess this is a good time to have a 4 year old with you because they are a good distraction.  Breakfast at the cafĂ© helped too.

9:45 am

Dr. Granet just came out and looks happy.  Phew!   2 hrs and 15 minutes after they first took him back.  He said everything went as perfect as he would have wanted.

As we discussed, he operated on two muscles on each eye.  He did not touch the oblique's because we wanted to be conservative and reduce the risk of strabismus (noted difference between Dr. Hertle and Dr. Granet).  Dr. Granet stressed the chin down null point over his head tilt and he also worked considerably on the head turn to the right.  It's hard to correct for chin down, turn, and turn all at the same time, especially when only using 2 muscles, so we had to decide what to stress.  I think this was the right call.

At this point it is a waiting game to see how Jesse responds.  A week out (9/5 ish) we should know how successful the surgery was and if he will need further correction.

Jesse did get some Novocain in his eyes to help numb them, but the doctor warned that he would wake up upset because he's 2 and is a "body without a brain" so he wouldn't understand the feeling of the novacain.  Valid.

10:00 am

Jeremy is allowed to go back and be with him.  He's crying a lot and wants Daddy.  He has weights on his arms so he can't rub his eyes, so that's not helping.


10:42 am

Jesse is discharged.  4 hrs from arrival to discharge.  He is pretty uncomfortable and moaning a lot.  Jeremy holds him as daddy, de-de and Minnie are requested the most.

....

From 12 - 6pm I take Max out to Coronado beach.  We play in the sand, run in the water, eat gelato, and then come back to the hotel to swim in the hotel pool.  He's such a mama's boy.  I love the water.
Jesse spends the afternoon sleeping and resting.


....

6:50 pm

Jesse opened his eyes for a second to watch Mickey and Jake and the Neverland Pirates.  He closed them pretty quick and decided he could listen and eat goldfish with his eyes closed.  He's not too red but they were dancing like crazy.  Is this normal?  Mom is nervous.


7:50 pm

Jesse opened his eyes again to read some books but he's quite lethargic and just looks sad.


Surgery Day (Day 2)

7:00 am

Jesse woke slightly cranky but his eyes opened pretty quickly.  They are red but not awful.  (I suppose that depends on your definition but compared to what I had envisioned, it's not bad)

9:00 am

Jesse is up and playing with legos, trains, and acting pretty normal.  His eyes are mostly open and he is very talkative.  The eyes are dancing quite a bit and there is noticeable misalignment between the eyes.  His left eye, with the most work done on it, won't seem to reach the outside corner.  Is this normal for the day after surgery?  We just have to wait and see.  I'm praying it corrects itself and goes away.

26 hrs post surgery looking at the camera.
(It should be noted that he could pretty much do this pre-surgery
as well, as he never really had a head tilt/turn in pictures. 
But here you can see some redness and soreness)


....

Today Max and Daddy got to go to the San Diego Zoo. Apparently it's AMAZING!

...

1:00 pm

Lots of play time today.  Legos, trains, painting, and lots of ipad time.  His favorite.  He still does his head tilt and I'm not sure if that's because 1) the surgery didn't work, or 2) because we didn't correct for a tilt that much (remember, it's hard to hit all 3 directions w/o touching the oblique's) or 3) maybe he's just so used to tilting his head to see his ipad that's what his normal is and he doesn't yet know that he doesn't have to do that.

28 hrs after surgery

1:30 pm

I'm finally getting this kid down for a nap.  I guess that's a good thing!  He only wants to eat goldfish and crackers but who am I to argue with that.


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Surgery T-2 Days

What a roller coaster.  We are two days out from surgery with Dr. Granet and I can't believe it's actually happening.  I'm excited.. I'm nervous.. I'm scared.. I'm ready.

You see, Jesse was supposed to have surgery with Dr. Granet back in June.  However, a major family emergency took him away from his practice for nearly 3 months!  Unfortunate for us and all his patients, but mostly for him and his family.   Yes, our surgery got cancelled, but at 2 years old, Jesse didn't know any different.  Mom, on the other hand, was pretty disappointed.

Now, however, we are two days out.

Two days from major eye surgery.  Two days from putting our little boy under anesthesia.  Two days from a life changing procedure that could mean that he won't have to use a null point to see the TV or read a book.

NERVES!

But we are excited.  I've talked to Max about how Jesse won't be able to play for a few days, or weeks.  I've talked to Jesse about being in a hospital and having surgery.  He points to his eyes and says "surgery on eyes?"  "Yes" I say back to him, "But it will be okay.  It will help you see better"

Stay tuned...



Jesse - August 21, 2017
1st day of pre-school (age 2)


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