Surgery is No Easy Decision

Welp, we saw the Ocularplastic Surgeon today, and Braxton will definitely need surgery to have Jone’s Tubes placed in his tear ducts. BUT, the surgeon doesn’t think there is any need to rush in to the surgery just yet because the procedure is so high maintenance.

The doctor confirmed that Braxton’s upper tear ducts are absent and he agrees that his lower tear ducts are incredibly small, and probably still too small to try the silicone stents.  Since probing was already tried and unsuccessful, the next thing would be the silicone stents, but if a probe won’t go in a tube won’t either AND it’s more of a temporary fix, so it’s time to consider other options. I asked about possibly surgically opening the entrance to the tear ducts so we could do the silicone tubes, but the doctor said if the probe won’t go in, it’s likely the tear duct system isn’t functioning properly, so it wouldn’t help.  He explained another procedure called Dacryocystorhinostomy (DCR) Surgery that would be done IF Braxton had upper tear ducts. With DCR surgery they would break a small part of the nasal bone to redirect the tear duct to drain to the nose and bypass his natural tear duct system.  This is ideal, but Braxton doesn’t have the upper ducts. So, the only other option now is Jones Tubes. With the insertion of Jones tubes, a small piece of the nasal bone is still broken, but in addition, a GLASS tube would be inserted into the tear duct to physically construct a passage way for the eyes to drain.  Yes, you read that right, a glass tube will need to be inserted into my child’s face.  When we were told about this previously, I didn’t realize it was a glass tube! (Image source)

This. In Braxton's eye. o_O

This. In Braxton’s face. o_O

The doctor explained that he said the procedure is high maintenance, not because it requires a lot of care, but because it requires a lot of follow up and adjustments with complete sedation any time any adjustments need to be made since Braxton is so young.  In adults, the adjustments can typically be done in office.  Some of the issues he mentioned were having the tube fall out, the tube breaking, the tube being moved out of place and needing to be repositioned, etc.  My mind was reeling at this point and about 50 questions poured out. If it’s glass, does that mean just bumping it the wrong way can break it? If he falls on his face the tube can break? Can it break and just sit in there? What? It can? So how do we know if it’s sitting in there broken?! How can it just fall out? If it’s broken and part of it comes out can the other part injure him inside? What about recovery time?  etc, etc, etc….sooo many worst case scenarios immediately came to mind and poured out (better than my own tears instead I suppose) The doctor told me these were all valid scenarios which is why this is a decision that really need to sit down and consider heavily before proceeding.

What if it was your child? [If you are ever unsure, ask this question and you’ll get an honest opinion.] I did ask.  The doctor said if this was his child, he’d wait.  He said he would give the child more time to grow and wait until he could walk and some of the danger of falling, crawling into a wall, or bumping his face would be removed, but that he would definitely have the procedure done.  For Braxton, he said this is really probably the only option if the ducts don’t open on their own as he gets older, so we could give him more time and just deal with the goopy, crusty eyes for now, and re-visit the placements of the Jones Tubes in a couple years.  He said he didn’t feel the procedure was extremely critical right now, but that Brax would most likely need it done and that he would talk to our ophthalmologist to see what she thinks and why she was recommending the tubes now to begin with.  Ultimately, it is our decision, but he wants to speak to her directly to see realistically what can be expected.

*sigh*

Now, it’s time to weigh our options and decide what we are going to do for Braxton.  On the one hand, waiting is great. He doesn’t need it right now? Awesome, see ya in a few years doc. But on the other hand, Braxton wakes up with eyes crusted over at least 80% of the time. Even taking a nap, when he wakes up goo is all over his eye, making it impossible to see.  The skin around his eyes is so red and irritated from all the cleaning we do throughout the day with warm washcloths and baby wipes.  If I go anywhere near his eyes, he just freaks out.  He barely tolerates having his eyes cleaned anymore.  It kills me to see him like that.  While it doesn’t appear to cause him any physical pain, I know how I feel when my eyes are crusted from allergies or pink eye so I can’t imagine what he feels like! The doctor says he is fairly certain it doesn’t affect his vision, but I don’t see how it doesn’t. Surely, trying to see through goop all day can have some effect, no? OH, I dunno. All I do know is that I need to wrap my head around this and make some decisions.  We follow up with our ophthalmologist at the end of May and hopefully she can provide some more answers.

you can see some of the goopiness...it's usually worse, but today is a good day.

you can see some of the goopiness…it’s usually worse, but today is a good day.

10 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

10 responses to “Surgery is No Easy Decision

  1. Good luck with everything Vanessa. I hope everything works out just fine and that his eyes stay clear and infection-free until they do the surgery.

  2. I just missed you on facebook, I was hoping you would get back on when you saw I messaged you. I was born with out tear ducts.. I had many surgeries when I was little. Even now I need to go see a ocular-plastic surgeon, because one of my tear ducts is blocked.
    I don’t know some of the details you are looking for, but I am a little more familiar than the average person. I just asked my dad if I had glass in my face, he doesn’t have the best memory but he doesn’t think that I do, but both top and bottom tear ducts were missing. Reading your post makes me want to see that ocular-plastic surgeon sooner to ask.

  3. Praying for you as you make decisions. It is sooooo hard figuring out what path to take sometimes!

  4. So hard. We’ll pray for wisdom for you. Have you tried cleaning his eyes off with warm baby oil?

    • I’ve not tried baby oil, didn’t even think of it! We usually use a warm washcloth which he will tolerate better than a baby wipe. We’ve tried 2 different ointments that don’t seem to provide much relief, and now he can rub his eyes so I only use it at night to keep him from getting it in his mouth :/

  5. Pingback: A Big Day Ahead | Journey Full of Life

  6. Pingback: Surgery Day | Journey Full of Life

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s