July EUA & A Book Mystery

Tom had an EUA (evaluation under anesthesia) last Monday. I'd say this was probably the 16th time Tom has been under anesthesia. That is a lot but in his case it is a necessity. He had five retinal surgeries, three glaucoma surgeries, and his g-tube placement but the rest were just EUAs.

New toys!

I know. Just an EUA. That's enough to make your average parent want to faint. Going under anesthesia is a big deal and it isn't fun, but it's the only way to really evaluate the health of Tom's eyes. His eye conditions require regular checks of his retinas, glaucoma pressure, his optic nerves, and his corneas because of his contacts. 

I have to say that this was our smoothest EUA to date! We arrived at 10:30 and got called back to the pre-surgery prep area within 30 minutes. He sailed through his check-in with the nurses because they did an excellent job of telling him what they were going to do before touching him. 

That is SO IMPORTANT! I'm sure it's helpful and calming for any child. It is essential for a blind child.

 Can you imagine strange hands just touching you and prodding you with no warning? I know it would freak me out.  I was sure to thank them for talking to Tom and explaining their exam. Talking to Tom is a big deal as well. He is the patient so talk to him. Sure, I want you to tell me about his health care but caregivers and health care workers should speak to the patient they are caring for. I believe that going to a children's hospital really does make a big difference in the care a child gets. 

The Book Mystery

After the check-in you can go to the playroom to wait. This is Tom's favorite part of the day. Check him out in the Cozy Coupe! One thing we were looking forward to that day was finding the Braille books that were donated to the Children's Hospital of Pittsburgh.

I know the donation happened because they were donated by a very kind woman because of Tommy! Imagine my surprise when they could not be found! I looked all around. I noticed much less books available overall at this visit.

I even have a photo of one of the books that was donated for the same day surgery center. Now it was a speedy trip through the playroom this visit. We probably only played in there for twenty minutes in between meeting with the anesthesiologists and the surgeon. If we had been there longer I would have asked them to track down these Braille books for Tom. After all, that's what they were donated for!

I hope the Braille books are not being hidden away because they are special. These books should be available for use by anyone. These are just regular print books with Braille strips added. They are called twin vision books because they allow both sighted and Braille readers to enjoy them. These Braille books are produced by non-profit companies and sold at cost to encourage wide usage. Having these books available is also a great opportunity to introduce others to Braille. This is a teaching opportunity! I'll let you know if I am able to track down these books. 

I'm trying to wake up. Stop taking my picture...

EUA Results

Tom's right eye is doing well. They removed his contact and cleaned it for him. I made an appointment for a visit with the doctor who handles Tom's contacts. We are planning to order a new pair but now I am not so sure. Maybe we will only purchase a contact for the right eye this time. His left eye is not very functional. He has a bit of light perception in his left eye but that retina is barely attached and there is only a small opening in the scar tissue that allows light to enter the eye. However, that eye has continued to grow and it does not seem to cause him any pain.

Tom's doctor said his left eye presented with a pale optic nerve (not good) but there was also some hemorrhaging. This hemorrhaging was a result of trauma. That was shocking to hear. It was even more shocking when we learned that this trauma was caused by Tom's own little hands!

Tom's occasional eye poking and pressing has actually caused damage and that is scary. We have always tried to discourage those behaviors but we never wanted to draw attention to them.

You know how once a child knows an action bothers you that action becomes even more powerful? Well now we are correcting this behavior every time we see it. We don't really have a choice anymore. Frankly, we must keep Tom's eyes as healthy as possible so he can keep them.

Tom's left eye is basically a living placeholder. It doesn't function but as long as it does not cause him any pain I want to keep it. You have to have something in the eye socket or the face will not grow symmetrically. If not an eyeball, then you need a conformer to fill that space and encourage normal growth of the orbital and other facial bones.

I do not want Tom to go through the eye removal and conformer fitting process unless it is absolutely necessary. Hopefully we can discourage his eye poking and pressing behaviors and keep his eyes as healthy as possible.

I must say. This was a good EUA (minus the hemorrhaging in the left eye of course). As long as his right eye maintains its current health and his left eye stays alive I will be very happy.

I almost forgot! Tom got his teeth cleaned and evaluated while he was under. We don't want to disrupt all the progress we have made with his oral eating by putting him through a dental exam. His teeth are sparkly and healthy! We plan to make a visit to the dentist at the Children's Hospital of Pittsburgh soon to slowly introduce Tom to that type of dental care.