Tag Archives: decisions

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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Something’s Gotta Give

I’m really getting tired of reporting Braxton’s tummy woes.  It’s the absolute worst to follow everything the doctor tells you do, only to find that it is still not best for your little one.  Seems like we find a solution and it works for a couple weeks and then BAM! back to square one.  I was really excited when we added corn starch to Braxton’s feeds and were able to run his feeds over 30 minutes instead of an hour, but alas, the vomiting has returned.  I’ve documented everything, but can’t pinpoint exact cycles, so I’m not sure if I’m dealing with Cyclic Vomiting or if it’s simply all part of the Dumping Syndrome.  Everything I’ve read on CV though is pretty severe and a lot of kiddos end up in the hospital for it, so probably not that.  It’s just so frustrating! Even moreso when I can’t get a doctor to return calls while I’m dealing with a child who can’t keep his food down….if that’s not an emergency or at least worthy of a call back I don’t know what is! Possibly time to find a new doctor.  Yes, I know they have other patients and are very busy, but certainly not everyone who calls is vomiting uncontrollably! I’m just at my wits end and feeling like somethings gotta give; my sanity being most likely the first thing to do so.

After a lot of research, sleepless nights, and just misery watching my poor baby, I’ve finally decided it’s time for a change.  We’ve tried several different formulas, medications, and other remedies and they have all failed.  So, I’ve decided to tackle a Blenderized Diet for Braxton.  Just doing the research and trying to wrap my head around it all has me feeling a bit overwhelmed.  Brings back NICU memories when we were being released with endless discharge instructions and appointments to be made. But, we made it through that and we’ll get through this and hopefully it finally brings relief.  All of the research shows that a Blended Diet is healthier and has several benefits, so in the end, if it’s better for Braxton, then I’m all for it.  I’ll do whatever it takes to help my little man.  Many people who have tried Blended Diets did so because their child had several GI issues which included severe vomiting. Almost all who made the switch report that the vomiting stopped within the first week of switching, and many have said their child even started tolerating oral feeding as a result. [ I sound like an infomercial! Possibly still trying to convince myself here….who knows] If we could get Braxton eating by mouth again I would be ECSTATIC!! [So would our Speech Therapist!] There are still some conversations that need to happen before we can forge ahead, but some of the important ones have already happened.  Our Speech Therapist and Occupational Therapist are on board with this decision which is a blessing.  We need to talk to our GI doctor when we see him Thursday to get him on board, and a nutritionist so that we make sure we’re still getting Braxton all the vitamins, nutrients, calories, and everything that he needs to stay healthy and continue growing.

It’s all a little bit scary and very overwhelming, but I’m confident in moving forward with this decision.  I’ll definitely be keeping detailed journals on everything that we try so that we can come back and post here what worked for us.  I can only hope any of the information I write here might help anyone out there in the same journey.  I’m open to suggestions/advice too so if you have any helpful info on getting started, things to do/not do, recipes etc. use the form on the “Contact Us” page and send it over! Thanks in advance!

/// On a brighter note! Braxton took pictures at daycare a few weeks ago and we received our prints today of our handsome man!

Sweet little boy :)

Sweet little boy 🙂

Brax's little smirk like he's too cool for the camera

Brax’s little smirk like he’s too cool for the camera

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