Tag Archives: surgery

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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Hmm…where did I put my cape?

Yes, as in my superhero cape.  Oh, You didn’t know Moms were superheroes? How else do you think we can manage to run the house, keep the children fed and bathed, all the homework done, doctors visits attended, work in OR out of the home, schedules maintained….surely it takes SOME kind of super power to be able to balance all that! I truly believe that all mothers possess an inner superhero, and it’s about time for me to again channel mine. We’ve had a couple quiet months appointment wise, but that is quickly changing!

Look at that big boy waiting for the doctor!

Look at that big boy waiting for the doctor!

First, we had an appointment today with our ENT (Ear, Nose and Throat Doctor) to follow-up on Braxton’s ear tubes and hearing aids.  I wasn’t expecting the news I received.  First, the good news, Braxton’s tubes are still in place and look clean and dry. Woo! The doctor said tubes typically stay in place about a year, which we are coming up on next month, so he just said to keep an eye on them to make sure they don’t fall out.  If they do, we’d have to repeat the procedure.  I again mentioned Braxton’s constant congestion.  It really just continues to get worse for Braxton. He always sounds like he has a cold.  The Doctor said he still thinks this is due to poor oral motor muscle tone and didn’t think it would be successful for Braxton to have his sinuses probed because his sinuses are probably too small to really have benefit.  It will unfortunately just take more time and as he grows his sinuses may also help open up.  He mentioned that since Braxton also has a high arched palate, that takes up some space in the sinuses which could also cause the back up. I did ask what he thought about having his throat scoped to check for damage from all the vomiting or anything else that may help us in deciphering why Braxton refuses to eat.  He said it was probably more a neurological or sensory issue instead.  Then, the not-so-great news. He looked in Braxton’s throat and said Braxton’s tonsils are growing much faster than his mouth and are too large.  He didn’t recommend surgery right away, but he said it’s very important to now monitor Braxton’s sleep due to the enlarged tonsils.  I will have to wait for Braxton to fall asleep for about an hour and then watch him for about 10 minutes to see his breathing rhythm, note any snoring, and also note any pauses in breathing.  Pauses 2-3 seconds are not cause for concern, but pauses 5-10 seconds to where he gasps for air are very problematic. He also mentioned that having large pieces or amounts of food in his mouth would cause him to gag/choke due to the size of his tonsils.  This could very well be why he isn’t eating.  I’ll have to watch him when we feed again to note any gagging/choking.  So far it’s just complete refusal, and the few bites we do get in he does ok with. At least that I can recall.  Ideally, we’d like to avoid having the tonsils removed because not only is the recovery difficult, it could also cause extreme setback when it comes to eating, however, breathing trumps everything.  If he isn’t breathing correctly, we need to remove his tonsils.  Ugh, more surgery. Poor kiddo 😦 After we met with the ENT, we went over to see the Audiologist for an in-office hearing test.  Braxton is still a little young for good results, but he did ok with the booth test and the results were fairly similar to the last ABR we had.  The audiologist said she does think we need to have at least one more ABR to confirm the results of the last test and to make sure his hearing hasn’t gotten any worse.  We’ll try to get that set up this summer.

I’m enjoying the next 2 weeks of quiet because I have my work cut out next month.  We just added a visit to an Occularplastic Surgeon to discuss the possibility of the Jone’s Tubes should his ophthalmologist not be able to probe his tear ducts as we discussed last visit.  We will be scheduling the probing and irrigation this summer, and if that still doesn’t work we will have the plastic surgeon on hand to go ahead and do the reconstructive tear duct surgery. We’ll probably need to do some imaging since there is no way I’m letting this doc break bones without even checking the structure and investigating what else could be the issue.  That means we’ll be tacking on all the imaging everyone else wants done too.  Most likely an MRI of the Brain and Orbits will be done, and I know ENT mentioned a CT of the inner ear which I’m sure we can coordinate.  Will probably try to get that set for early May, because April is too full.  We then have our EEG scheduled the next week per our last neurology visit to check on brain activity and make sure there is still no seizure activity happening.  We will also see our Geneticist next month to go over the results from our Exome Sequencing.  Fingers crossed that we will finally get a diagnosis, or at least some hint about the underlying cause of all our issues.  All that on top of our regularly scheduled therapies.

Annnnnnd, Joseph just received a promotion at work! Yayyyy!! However, that means more training and certifications which will require him to be away from home. Boooo! Thankfully, he was able to make some calls and arrange the initial training around next months appointments so I don’t have to go it completely alone nor completely rearrange everything.  I’m a little uncertain of the schedule after that, but I’m mentally preparing for the time apart.  I’m very excited and proud to see his hard work finally paying off! It’s just like someone came and kicked the dirt up from around us.  Dealing with the initial shock and confusion of the kick is the hard part, but I know when all the dust settles, everything will be just fine.  🙂

Welp, I need to get back to looking for my dang cape!? I definitely need to channel my inner Supermom for the next few months.

Images from: Riveter Mom , Wondermom , and SuperMom

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Kids Are Resilient

There is no greater testimony to that quote than Braxton.  This child is so incredible! Sure, I’m his mom and I’m supposed to say that, but you can’t say you don’t agree! 😉  Braxton has gone through so much in his short life and yet he is always smiling and laughing and lighting up everyone’s life.  Through his recovery from the hand surgery, he’s had moments of frustration and sadness, but they pass quickly and he’s back to enjoying life.  He’s tried so hard to adapt to the situation as well.  Thankfully, his thumbs are out of the bandages so he’s becoming quite proficient at using them haha. He’ll reach out for his pacifier with his thumb and you can see satisfaction all over his face when he manages to get it and put it in his mouth without any help.  Sometimes, he’ll even just bend himself forward to try and pick up the pacifier with his mouth! I look over and Braxton has folded himself in half! He’s like that with everything though, he’s going to be a happy kid who can adapt well to any situation.  When he was learning to sit on his own, we’d sit him up and when he fell over instead of crying he just flipped himself to his tummy and started trying to pick up on all fours instead. It seems like he just thinks “Well, that didn’t work, let’s just try something else instead.” He’s not giving up, he’s finding other ways to entertain himself and strengthen and learn.  Adaptation is so far one of his strong points.

As far as the ear and sinus infections go, he’s definitely starting to feel better.  He sounds much less congested and hasn’t vomited anymore. He’s tolerating his feeds well and we’re slowly working on increasing the speed back to where he was before he got sick.  He’s been very vocal this weekend too.  We haven’t been able to use his hearing aids since he’s still having some ear discharge from the infection, but hopefully by tomorrow or Tuesday he should be ok to put them back in.  Nonetheless, he’s been babbling away and shrieking with excitement randomly throughout the day.  Watching him and sister play right now and he’s cracking up with her and actually responding to her silliness. It’s so great to see that. I can’t wait until he can really talk to her and hear her with no problems.  More importantly, I’m glad that she’s been so great with him. Proud mama for sure. 🙂

We have a busy week ahead. Braxton has his regular PT and Speech therapy appointments, OT is on hold until his hands are out of the bandages, we have a follow-up Wednesday for another bandage change, Thursday we follow-up with the audiologist for his hearing aids, and Friday we go for his Gastric Emptying Scan.  Busy, busy, busy, but Braxton will get through it all with a smile on his face. Resilience. 🙂

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We Survived the Weekend

Man oh man, we have a long, hard road ahead! If you can believe it, this has been the roughest weekend we’ve had with Brax since we brought him home from NICU.  He’s never been one to fuss too much, but he was not a happy camper this weekend.  Poor baby was doing so well trying to crawl and now he’s not allowed to bear weight on his hands at all!! It’s been pretty tough trying to keep him off of his hands. Every time we lay him down he flips almost right away, he’s up on his hands and smiling as big as ever! So, obviously it doesn’t hurt it too much, but the doctor said too much weight bearing and it could damage the surgery site and skin graft site, sooo better safe than sorry and we’ll be keeping him off his hands.

We’ve been trying all weekend to find things he can do without his hands.  We’ve sat him up quite a bit and read him some stories, he’s got a penguin punching bag type toy and he seems to enjoy that, and we’ve also let him do LOTS of jumping in his bouncer.  He LOVES that thing! He’d bounce in it all day if we let him (but he falls asleep in it, so we take him out).  He’s also been sleeping much more than usual. Probably because he’s so bored from being kept off his hands.  But he seems a little restless too.

It’s tough getting him to sleep at night, it’s like he just can’t get comfortable and just kicks and kicks until he falls asleep.  The hospital sent us home with a pain med prescription, but I hate giving him such strong medicine if he doesn’t need it, buuutt he doesn’t complain enough for me to know when he needs it! Gahhhh, talk about frustrating.  I mean, I know if *I* had surgery I’d probably need it so it seems mean to keep him from it, especially since he’s not old enough to tell me what’s wrong.  Guess that’s really been the struggle this weekend.  Knowing when to give him the pain med versus just regular Tylenol or Ibuprofen. And of course keeping him off his hands, which he is just dying to do.  Seriously can’t even leave the room if he’s awake because by the time we come back there he is on his tummy up on his hands. Silly boy.

I think, overall, it’s been a pretty good weekend.  Taxing on us mentally and emotionally, but we’ve had some good times too.  Brax still seems to be in such good spirits and manages to laugh and play with us an awful lot.  Just hurts to see him trying so hard to want to crawl, to grab his pacifier, to reach out for toys and just not be able to with the bandages on.  12 more days of this. Yikes!

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Home…Safe and Sound

After we spoke with the audiologist we were taken to the recovery room to see Brax.  The nurses were still waking him up from the anesthesia and monitoring his vitals.  As we sat there with him and holding him we managed to get a few smiles out of him even though he was still pretty groggy.  His hands are completely bandaged, and he can’t do anything with them. That means no weight bearing so there goes all the crawling progress =/ Maybe it won’t set him back too far.  His cough was still pretty bad and the nurses said they were able to suction out a lot of mucous from his chest while he was under, so hopefully that helps him.  We stayed in the recovery room for about 30 minutes then got moved to another room to prep for discharge.

In the second room they continued to monitor his vitals, but he was pretty much awake and just laughing and smiling away with us.  We put his hearing aids back in and he was just happy as could be.  His vital signs remained consistent so they took him off the monitors.  We gave him about 2 ounces of pedialyte just to see if he’d keep it down.  After about 10 minutes, they went ahead and took the IV out since he kept the pedialyte down.  We were given our discharge instructions and they finally let us go home.  Overall, everything happened much faster than anticipated.  I thought we were gonna be there forever!  We were released with a medication for Brax so we picked that up on the way home.

Now, we are finally home and Braxton is resting safe and sound. 🙂

Thanks to everyone for your prayers and well wishes!

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