Ped Op Visit - November 2014

Alex had a Ped Op visit at Duke today.  Alex was AMAZING at this visit and very cooperative.  For the first time we were able to do the vision assessment where he identifies objects projected on the wall.  He cooperated for all of the other assessments and we even got his pressures in the office which hasn't happened in a very long time.  Not to say the assessments were done on the first (or 25th) attempt...but definitely progress.  He sat in Daddy's lap and each one was a "game".  When we asked him what his favorite part of the visit was he said the games.  Also, it might have helped that there weren't any eye drops this time.  The office was very busy and the wait times were long, but Alex and his sister did a great job.  We ran into one of Alex's former classmates from Governor Morehead Preschool and they had fun playing in the waiting area. 

We were blessed with no changes since his last clinic visit and EUA.  Pressures were good, no cataracts, patching is working to keep vision in left eye, no change to his glasses prescription.  For the patching, we will continue to patch 8 hours per week and observe, but he may need strabismus surgery in the future. 

Next office visit in May 2015.  Planning for another EUA in summer 2015 to check the drainage angle to see if any progression of the lacy membrane closing the drain.  If progression, we will discuss pros and cons of goniotomy surgery to open the drain to prevent glaucoma.

Sleepy boy at lunch.  Took a final bite of grilled cheese and then went to sleep in the booth.

Third EUA

Alex had his third EUA on Friday.  We had a 6am arrival time at Duke.  We were in a different bay than the last two times and Alex remembered that the other one had bees on the walls.  He did well with the nurse taking his vitals -especially since Daddy made it a game.  Alex did not want the oral medicine to help him relax before going back for general anesthesia.  After a lot of coaxing to try and take it with apple juice, the nurse just had to put it in his mouth.  It tasted terrible and he gagged and spit up a little, but did keep the majority of it down.  In the last two pictures you can see the medicine was working and he was getting really silly.  Recovery went well and was similar to his first EUA about a year ago.  For his second one, they did not include a drug in his IV at the end to slow his wake up and he woke up very disoriented.  This time, similar to the first one, they included the drug and he was in recovery for a while.  He woke up and wanted everything removed (IV, etc.).  He calmed down after a while and fell back asleep on my lap.

Results:  No changes.  Pressures  still low (no glaucoma), clear corneas (no cataracts), no progression of the lacy membrane that covers the drain.  Next appointment will be a clinic visit in 3 to 4 months.  Most likely will have surgery after that to correct his left eye that drifts out. 

 

First EUA

 

The Exam

Alex had his first exam under anesthesia (EUA) today.  He did really well.  In the triage area, we read a lot of books and tried to keep him on our laps as much as possible.  The walls were painted with a farm scene and Alex petted the cows and pretended the bees were stinging him.  He was given two sets of eye drops to dilate his eyes.

 

 

 

 

     Things we didn’t expect:

• How long it would take.  Our appointment time was 8:45 am (we got there at 8:15am) and Alex was discharged at 1pm.  Parents – bring snacks for yourself!
• How many diapers we would need.  Between the last apple juice 2 hours before his appointment time, all of the IV fluids, and lots more apple juice after the exam – he needed lots of diaper changes. 
• What we would need in the recovery room – diapers, sippy cup, clothes to redress.  The nurse had to find Rob to bring those things to me.
• His eyes to be sensitive afterward.   We took Alex's sunglasses off when we got home, but he grabbed them and put them back on.  He wore his sunglasses until bedtime. 

Since he is so young, the anesthesiologist recommended that Alex take an oral sedative so that it would be easier to apply the gas.  It doesn’t taste very good, but he didn’t spit it out.  He just made faces and tried to touch his mouth.  We kept him busy by having him point at things around the room.  I have a feeling this trick won’t work at his next EUA.  After Alex had the oral sedative, he started to get a bit drowsy.  His head flopped and his speech was a little slower.  Rob gowned up and we waited until it was time to take Alex back.  Rob went with him when they applied the gas and I waited in the triage area. 

 

 

The EUA took about 45 minutes and we waited in the pediatric waiting room.  Alex’s doctor met us in the waiting room and let us know how the exam went.  I went back to the recovery room and waited for Alex to wake up.  He wasn’t waking up on his own so the nurse had to wake him up.  He was groggy and cranky.  We went back to the triage area and Alex had some apple juice and graham crackers.  Rob joined us and dressed Alex while he ate and drank his snack while sitting on my lap.

 

 

 

Results

I am summarizing below from the notes I scribbled on the back my Duke Eye Center word search.  We need to do some research to get a better understanding and digest everything.

 

     The Good:

• Lenses are clear (no cataracts)

• Optic nerve has a cup, but is healthy

• Alex is more far sighted than originally thought. The doctor wrote a new glasses prescription to fill sometime in the next 6 months.  I want to look into getting the prescription Julbo’s since he wears those all the time and they don’t fall off.

• Pressure reading was 12 (no glaucoma)

 

     The Not So Good (indicators Alex is at risk for Glaucoma):

• Drainage angle is not normal

• There is a lacy membrane attached to the root of the iris.  Over time this could retract and fluid would not be able to drain. 

 

So what’s next?

• Another EUA in 4 months to see if the membrane is retracting

• The big question:  Do we have a preventative surgery to cut the membrane and prevent possible closure?  

“In the past decade, many surgical advances were made in the field of ophthalmology and some of these surgical treatments were attempted on individuals with aniridia.  As we continue to study aniridia, we are learning is that the aniridic eye is very delicate and any intraocular surgery is risky because of the impact on the other structures of the eye.  Many times, a treatment to address one issue can result in another issue (for example, corneal surgery that fixes the cornea but results in glaucoma. Or, glaucoma surgery that results in damage to the limbus region or a cataract.)   Also, a condition called aniridia fibrosis where fibrotic tissue begins to invade the interior of the eye.” – Vision for Tomorrow website

We need some time to think about all of this and do some research. 

 

Right now we are so happy to have our little boy back home.   The nurse said he would be tired and want to sleep.  Not so!  Alex told Rob he wanted to, “Run!” around the playroom. 

 

 

More information about Glaucoma from the Vision for Tomorrow website:

“Glaucoma.  Glaucoma is a group of eye diseases that gradually steal sight by harming the optic nerve. In the early stages of the disease, there may be no symptoms. In most cases, glaucoma is caused by an increased pressure within the eye. This elevated pressure is caused by a backup of fluid in the eye. Over time, it causes damage to the optic nerve.

In order to best understand what happens in glaucoma, think of the eye as a sink, in which the faucet is always running and the drain is always open. The aqueous humor (the fluid) is constantly circulating through the anterior chamber. This fluid is produced by a tiny gland, called the ciliary body, situated behind the iris. It flows between the iris and the lens and, after nourishing the cornea and lens, flows out through a very tiny spongy tissue, only one-fiftieth of an inch wide, called the trabecular meshwork, which serves as the drain of the eye. The trabecular meshwork is situated in the angle where the iris and cornea meet. When this drain becomes clogged, aqueous cannot leave the eye as fast as it is produced, causing the fluid to back up. However, because the eye is a closed compartment, the “sink” does not overflow; instead, the backed up fluid causes increased pressure to build up within the eye.

To understand how this increased pressure affects the eye, think of your eye as a balloon. When too much air is blown into the balloon, the pressure builds, causing the balloon to pop. Because the eye is too strong to pop, it gives at the weakest point, which is the site in the sclera where the optic nerve leaves the eye. As we mentioned above, the optic nerve is the part of the eye which carries visual information to the brain. It is made up of over one million very thin nerve cells. When the pressure in the eye builds, the nerve cells become compressed, causing them to become damaged and, eventually, die. The death of these cells results in permanent visual loss.”

 

Pre-op Appointment

Today Alex had a pre-op appointment for his upcoming exam under anesthesia (EUA).  He did pretty well and the nurse was very patient. She checked his weight and height, took his temperature, listened to his heartbeat and breathing, and tried to check his pulse. He kept pulling his hand away. We answered some medical history questions and that was all.  Alex is having the EUA performed so his eye doctor can get a better look at his eyes and get a pressure reading to check for glaucoma.  We will update the blog with the results of the EUA.  Thanks for all the thoughts and prayers!

January 2013 Ped Op Visit

Today Alex visited his Ped Op at Duke.  It was a standard visit to check how he is doing.   

We were unable to get a reading of his eye pressures because Alex did not like the instrument in his eyes and wanted to touch it or turn his head away.  Basically, he is a squirmy toddler and has figured out the whole doctor thing.  It is challenging because if they cry, the pressures rise.  Not that she even got a reading.  He just didn't want to cooperate.  His pressures were good and low in September so we are going to try again in May to get a reading.  If we cannot get a reading at that appointment, we will discuss an exam when he is sedated. 

To check his vision, drops were applied to dilate his eyes.   The doctor held up different glass lenses to check his vision.  Alex is extremely far sighted which she had mentioned at previous visits without the vision test.  Today the doctor prescribed glasses.  We are going to see if he is interested in wearing them to improve how he sees things close up.  We are hoping he notices the difference and wants to wear them.  This process was difficult because he did not want to let the doctor examine him (that whole toddler thing) so we had to hold him snugly and hold his eyes open so she could look.  Poor little guy.......lots of crying and tears......very sad for everyone in the room.

I was a little concerned with the length of time per week Alex wears a patch on his right eye.  But the doctor said he has improved and we will continue the patch therapy for 5 hours per week.

Wednesday is Art Cart day at the Ped Op office so Alex created art with the very nice lady who leads it.  He made dot marker art and played with pom poms in a plastic egg taking them out and putting them back in over and over.  It is nice they try to provide activities/toys/books/etc. for the children since the appointments last a minimum of two hours.

Next visit is in May so we will keep you updated.   I need to price glasses and I will make sure to post about that process.  Here is a picture of our little cutie before we left for the appointment.  

Alex - 17 months old

September 2012 Ped Op Visit



September Ped Op Visit Day





Alex visited the Ped Op at Duke at the end of September.  It was a different experience to take a squirmy toddler instead of a baby. Having his pressures checked was the hardest part because he wanted to grab the equipment or twist his head away.  He had a great visit - no glaucoma, no cataracts, no glasses.  He is using his right eye more than his left and the left is drifting out a bit.  This is called strabismus which is a muscle imbalance of the eye which leads to crossing of the eyes or a “lazy eye.” In esotropia, the eye turns inward. In exotropia, the eye turns outward, which is what Alex is experiencing.  I hadn't noticed it because of the nystagmus (wobbly eyes), but after the doctors pointed it out, I see it.

The Vision for Tomorrow Foundation has a great summary of aniridia's impact on vision.  For strabismus they note the following:

Impact on vision:  If uncorrected, strabismus can lead to amblyopia, or the loss of some vision function in the weaker eye.

Current medical/surgical treatments:  Strabismus is correctable with glasses, eye-patches and/or surgery.

For Alex, the current treatment is patch therapy where he wears an adhesive patch on his right eye for a total of 5 hours per week.  His next visit is in four months and we will see if there has been an improvement with the left eye.

We call it "patch time", but lately I try not to say "patch" because he is a smarty pants 1 year old and knows what the word means and tries to take off the patch.  The very first day he seemed scared after we put on the patch and cried quite a bit.  You can see the sniffles below.



First patch day - Mr. Grumpy

Even that first day he was easily distracted after a few minutes by playing with toys, books, and cruising around the room.  We try to give him toys that he really likes. 



Patch time is a family affair

The first few days were difficult, but he doesn't seem to mind the patch unless he is really tired.   He's worn it during meals, on walks, or out at a store.  The hardest part is getting the patch on.  I sneak up behind him and try to put it on as quickly as I can.  We are hoping the patch therapy works and we can avoid surgery.

Summer 2012 in Pictures

This summer flew by and we were busy having lots of fun.  Here are some of the highlights.

First trip to the zoo (6/24/12)

Picnic lunch on the driveway (6/26/12)

First time drinking from a sippy cup (6/28/12)

 

First haircut (6/30/12)

Marbles Museum (7/4/12)

First ride in big boy car seat (7/22/12)

Escape artist (7/23/12)

Trying puffs for the first time (7/31/12)

I'm 1! (8/21/12)

1st Birthday Party (8/25/12)