Tag Archives: ophthalmologist

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.

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Good Thing I Had My Orange Juice

You’ve seen the Florida Orange Juice commercials right? The ones where the people are sitting at a table and a whole group is telling them all the things that are going to go wrong that day..and at the end they say “Well…good thing I had my orange juice” Ha, well I totally felt like I was in one today…and if you haven’t seen one, here ya go:

[Disclaimer: I am not being paid for this, it simply related to how I felt today. I actually prefer Simply Orange orange juice instead. No, I wasn’t paid for that either.]

Today, Braxton had two doctors appointments.  Normally, I schedule appointments around Joseph’s schedule so I will have help getting him to and from appointments.  I work about 5 miles from most of his appointments, so it really helps when Joseph is home for him to bring Brax and for me to just meet them there.  Well, unfortunately, this week, Joseph was called in to work early leaving me to fend for myself with today’s appointments.  Normally, I leave about 15 minutes til the appointment time and arrive just on time. When I’m on my own, I have to leave an hour earlier than I planned so that I can drive all the way south to pick Braxton up from daycare and then all the way north for appointments.  Sadly, none of the specialists we see are near our house so it’s a good 30-40 miles from home for every one of them.  Blah! Needless to say, my breakfast table had Joseph telling me he had to go to work early. Excellent. Work telling me I’d be incredibly busy for the morning. Lovely. Braxton telling me I’d have to drive all the way to his daycare to pick him up. Sweet. The dentist telling me to arrive 15 minutes early for paperwork. Fantastic. The ophthalmologist telling me I’d have to wait an hour and a half to see her for 5 minutes.  Stupendous! And the weatherman saying it was going to rain all afternoon. Oh, joy! And finally, Aileen telling me she was going to have a bad day and throw a fit when I got home.  Swell. Unfortunately, I did not have a glass of magical orange juice.

The Dentist appointment went really well! There is a special needs clinic near the other specialists that Brax sees, but the waiting list was too long, so I found another dentist who has experience with SN children.  She was super nice! The whole staff was! From making the appointment, to filling out paperwork, and even the exam everyone was very nice and patient and helpful about the whole process.  Since he is still a baby his first cleaning was a lap exam, where he sat facing me and then he was laid back so the dentist could check him.  Usually, you have to sit awkwardly on that uncomfortable exam table, well this clinic had a large comfy chair I got to sit in! Pretty nice!

Quite the cozy exam room!

Quite the cozy exam room!

The comfy chair I got to sit in while they examined Brax

The comfy chair I got to sit in while they examined Brax

The dentist checked his mouth and we knew Brax had his 2 front top and bottom teeth, but turns out he has SIX more teeth coming in!! They are all in a crazy order, but the dentist reassured me it’s perfectly normal (regardless of him being SN) His top molars are coming in on both sides and his top & bottom canines are also coming in! Holy cow! I had no idea!! Guess we’ll be investing in a toothbrush sooner than expected. I also talked to her about taking his pacifier away and she said from a professional standpoint, she didn’t see any reason for me to take it away.  She mentioned speaking to a child psychiatrist who told her that taking away the pacifier could actually be detrimental because it’s something that is familiar and is comforting for him, so if we take it away it could set him back.  He hardly uses it anyway, so I’m not too concerned about that.  Brax also has one of his front teeth coming in a little crooked and covering the frenum on the inside of the upper lip.  The frenum is that small piece of tissue that you see under your upper lip connected to your gums.  Anywho, Braxton’s tooth covers that and I thought it might have to be cut or something, but the dentist said that wasn’t necessary.  She mentioned that it didn’t appear to be losing blood supply or anything and that in the future we could put an extension device in to help straighten the front tooth out. Overall, the visit went very well and multiple times the dentist told me she sees a lot of the same things in “typical” children who have no underlying genetic issues…that kind of made me feel a little better about everything. At least not everything about him is out of the norm.

Brax's tooth covers the frenum

Brax’s tooth covers the frenum

Our second appointment of the day was with the ophthalmologist.  I have a love/hate relationship with her.  I think she is very knowledgeable and thorough, but her office is terrible! I wait over an hour EVERY. SINGLE. TIME! We went straight after the dentist, so we arrived a little early (about 2:45 for a 3:00 appt) and there was no seat, so I had to sit with Brax on one of the little kiddie super uncomfortable wooden chairs -__- until we were called back at 3:55. Doc came in right away and visited with us for maybe 5 (ok ok I’ll give her the benefit of the doubt – 10) minutes.  This was a follow-up regarding Braxton’s abnormal tear ducts.  The lower ones are very small and the upper ducts are missing.  We tried probing and irrigation in April of 2012, but even the smallest probe had trouble fitting in to Braxton’s tear ducts. We’ve been playing the “wait-it-out” game ever since. The doc said that over time his ducts would grow and eventually they could try the probing again.  Well, today she looked in office and said that she could somewhat see the tear ducts, but that they still looked a little small to try and probe again.  She recommended we again wait until just before his 2nd birthday to see if they get any bigger.  If they do, Braxton will be put under anesthesia again and she will attempt the probing & irrigation again and possibly insert silicone tubes into his tear ducts.  The tubes will help to open up the tear ducts and allow the tears to clear naturally and eventually the tubes would come out, but leave the new tissue that has grown in tact so he would have working tear ducts.  She said we’ll be coordinating this procedure with the occular plastic team, because if, for some reason that STILL doesn’t work, we will have to go ahead and do a reconstructive surgery. 😦 He would have to have Lacrimal Bypass Surgery with Jones Tubes, which means they will break a small connector bone at the top of the nose and essentially create NEW tear ducts, therefore bypassing his original ones completely.  After 3-4 months the tubes would come out leaving the system in tact for his body to use instead of the original ones.  Blah, poor kiddo. (Images below from here.)

Illustration of Normal Vs. Blocked tear duct

Illustration of Normal Vs. Blocked tear duct

Before the surgery

Before the surgery

After the surgery

After the surgery

All in all, it was an ok day, albeit an extremely busy one! Good thing is, that it didn’t rain! Woo, take that weatherman! Haha…small victories.  It’s also a good thing that aside from daily therapies, we don’t have any appointments until the end of February! Could that be right?! o_O

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15 months!!

No, we did not fall off the face of the planet! haha And nothing tragic has happened with Brax, just super busy. We did just finish moving though (ugh, what a pain!), so we’ve been extra busy on top of all our normal appointments.  No, I have no idea what I was thinking either! Nevertheless, time continues to pass and lo and behold Braxton has made it to 15 months old! Yayy kiddo. 🙂

15 Months

Silly faces at the doctor’s office for his 15 month checkup.

 

Oh gosh, so where do I begin? Ah, yes, his hands….well Braxton is indeed pretty happy about having his hands free.  They’ve just about healed up very nicely.  The stitches are still slightly visible, but will continue to dissolve on their own.  You can barely see the scar along his fingers, and as he grows I doubt you’ll be able to see it at all. The graft is definitely still the most visible, but it’s healing nicely as well. I’m very pleased with the surgeon’s work. Braxton is doing so well though using his hands without any issues.  Weight bearing is awesome! He continues to work very hard on crawling.  Braxton has actually gotten pretty good at crawling backwards [that IS the first step!] and even pivoting around while moving back.  He can pretty much get where he wants to go and can even get himself back into a sitting position [takes a little work, but he can do it!]. This past week he even crawled a few “steps” FORWARD! Ahhhh, he’s so close! I know as soon as he can go forward, there’s no stopping him. I’m certain of it.

Hmm..oh the eye doctor! We did follow up with our ophthalmologist about Braxton crossing his eyes.  Of course, he did not do it in office, but this does somewhat reassure the doc that it isn’t something that needs immediate attention or glasses.  She said that unless we start noticing one eye crossing more than the other or the eyes “shaking” or moving outward that Brax would probably grow out of it and he’s just trying to focus on something. If he does start doing one of those we’ll discuss patching or possibly glasses.

And most recently, we checked in with his regular pediatrician for his 15-month check-up.  Lil man is now 23 pounds and 5 ounces and 30.5 inches tall!! He’s actually not all that little anymore! That’s a big boy! Poor baby had to get 3 shots, but took ’em like a champ and then passed out haha We will be going to get a hip x-ray soon and are being referred to an orthopedic doctor just to get a baseline hip & spine measure and rule out anything like hip dysplasia which would hinder Braxton’s walking abilities and other movement.  No one is overly concerned about that at this point, but it’s better to get it checked now than waiting until it’s too late.

Overall, we’ve had a pretty good couple of weeks.  The move went well [loving the new house!], Braxton is feeling better, he’s doing better, he’s babbling more and making more sounds, he’s moving more….it seems as though the sickness is finally all out of him. Now, we just need to get him back to eating! As always, thank you for reading!

 

[I promise not to make you wait 2 weeks for another blog entry again either!]

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