Seconds

The past couple weeks have marked some pretty big milestones.  October 31st was the second year anniversary of Atticus getting his tracheostomy.  November 7th marked the second year anniversary of Atticus’s major tongue reduction surgery.  I remember when Atticus first got his trach, we couldn’t hear any of his little noises – not even his cry.  He has come such a long way since then.  His speech is even better than your average 2.5 year old, even with his enlarged tongue.  And even with a trach, you can understand what he says perfectly.  He is so talkative that it is hard to imagine that we were ever concerned that he wouldn’t be able to speak intelligibly.

The little boy in the train engineer costume had an amazing Halloween.  He went trick or treating and came home with a Frankenstein bag full of candy.  What a welcome change from spending Halloween in 2012 in the hospital getting a trach and gearing up for a major tongue surgery.

This is also a big week for Atticus.  He will have his second treatment with Dr. Richter at Arkansas Children’s Hospital at the end of this week.  He will have another round of sclerotherapy (bleomycin injections) and he will get more lasering done to his lip.  It will be very exciting to see the results that we get from this treatment, especially since it may take a couple treatments to see results.  We do think that we see results from the first treatment though – so we will excitedly wait to see the results of the second treatment.  As always, there will be swelling afterwards, so it’ll take a month or so to see the effects.

Stay tuned!

Year Anniversary of Trach…and a Real Halloween

Hey Everyone!

I’ve been super busy lately with not a ton of time to write, but I quickly want to point out that today marks the year anniversary of Atticus’ tracheostomy.  I remember that day like it was yesterday.  Driving up to Wake Forest at 4:30 am and cherishing each little noise that Atticus made, knowing that I wouldn’t hear his voice or his cry again for a while.  Now that he is bigger, his airway is larger, and he wears a PMV, we get to enjoy his voice and his words, and for that I am grateful.

Although I never imagined that he would still have his tracheostomy a full year later, it is OK.  It provides him with a stable airway.  We will just take things one day at a time, and when the time is right for his trach to come out, it will come out.

Today also marks Atticus’ first REAL Halloween!  Last Halloween the little guy was sedated and getting his trach, in preparation for his major debulking surgery.  I’m so excited for him to experience a reall Halloween this year – with costumes and trick or treating.  I will post pictures of him in his costume soon!

Anyway, I am so grateful to look back to October 31, 2012 and see how far we have come.  Atticus continues to amaze me everyday and he keeps me grounded, he makes me realize what is important in life, and he makes me a better person.

HAPPY HALLOWEEN!

Atticus’ Business Cards

I guess I am so used to Atticus’ tongue and lip that I don’t even notice it anymore.  It’s becoming more apparent though, that others are unsure of what exactly is going on.  It’s pretty obvious upon interacting with Atticus that there is nothing ‘wrong’ with him, so people tend to be confused as to what is going on in his mouth region.  We’ve gotten some interesting questions from people.  It’s actually pretty interesting to see people’s reactions.  Kids tend to stare, but not in a mean way, just in a curious way.  Adults either don’t say anything, or sometimes they’ll ask questions, not always in the most tactful of ways.

One day we were sitting in the hospital waiting room before Atticus’ last pe-operation assessment appointment and some guy looked at Atticus and asked, “What happened to him?”  Not the most tactful way to ask, but you have to give the guy a little credit for wanting to know.  We explained that he was born with an enlarged tongue and lip.  He asked, “Can’t they just fix it with surgery?”  Well, yes, sort of, but it’s not that easy.  You have to remember that a tongue does so many things.  It allows us to speak and eat, among other things and there’s no such thing as a tongue transplant.  So, with Atticus’ enlarged tongue, doctors have to tread lightly with how much they remove.  What if they remove too much, or damage nerves and the tongue becomes paralyzed and Atticus can’t eat or speak on his own?  These are things that doctors need to consider.  So, no, it is not so simple as just ‘fix it surgically’.

I sometimes struggle with how much information to give people.  When they ask, I usually say he was born with an enlarged tongue and leave it up to them to ask if they want more information.  The other day, I was ordering deli meat and the deli clerk who was waiting on me smiled at Atticus.  Of course, Atticus gave a huge smile back.  The deli clerk looked a little confused, and took a closer look. “Is that a piece of candy in her mouth?”, he asked.  Well, first off, Atticus is a boy (haha) and secondly, no, it is not a piece of candy.  I politely explained that it is his tongue and he was born this way.  “Oh dear,” the deli clerk responded.  I really couldn’t assess whether he wanted any more information, so I just smiled and added, “but he is fine”, and went on my way.

This encounter with the deli clerk got me thinking though.  Maybe I am obligated, as a parent of a child with a rare anomaly, to educate others and increase awareness.  Maybe someday people will see a child or adult with an enlarged tongue, or enlarged cheek, or mass in their neck, and maybe they’ll still be curious, but once you say the words ‘lymphatic malformation’ the person will say, “Oh, I’ve heard of those!  They can be tough to treat, but you are just the same as me…you just have a bigger tongue (or cheek, or neck, etc)”.  As of this date, any time I’ve said the words ‘lymphatic malformation’ I have never been told, “I heard of that”.  It is always a look of curiosity.  Maybe this can change, and I will certainly start to do my part.

As the first step to doing my part, I got the idea of making up business cards for Atticus.  This was one of those ideas that came to me during my morning commute.  I do some of my best thinking while driving to work, when my mind is clear and I’m enjoying my first cup of coffee of the day.  So these business cards will explain a little bit about Atticus – that he is really no different from you or me.  The only difference is that his tongue and lip are bigger than ours, and he breaths out of a tracheostomy – not because he even needs to, but because doctors don’t want to take any chances while he undergoes treatment for his LM.  Next time, when I am faced with a “What happened to him?” or a “Is that candy in his mouth?”, I can explain that he was born with a lymphatic malformation of his tongue and lip, but he’s perfectly fine in every way.  I can then offer out this card so that people will remember what I said and maybe even have lymphatic malformation as part of their body of knowledge.  Next time they see the a kid with a big body part, it won’t be a big deal.  The cards explain a bit about Atticus on the front and on the back, as much information about LM as I could possibly fit on a tiny business card, which isn’t much, but it’s enough to get started.  Click the link below to see a proof of the cards, and next time you see Atticus walking down the street, ask him for one of his cards.  He might just smile and give you one.

LMInfoCardProof2

Tracheostomy and Tongue Reduction Surgery

This post will cover Atticus’ progress after leaving St. Louis Children’s Hospital NICU up until December of 2012.  We returned to our then-home, Champaign, IL, on May 18, 2012.  Doctors felt that Atticus might be in NICU for months learning how to eat, but since he proved that a big tongue was not going to get in the way of eating, they discharged him after only 11 days.  Brian’s mom, Pat, was staying with us for the month following Atticus’ arrival home.  We had a good time.  I’ll always remember our ‘movie night’ tradition.  How many Alfred Hitchcock movies did we watch in that month?  I’m not sure, but it was a lot!

On August 1, 2012, we packed up Atticus and our two cats (Mr. Sprinkles and Oliver) and drove over night to our new home of Charlotte, NC.  Atticus’ Ear Nose Throat (ENT) specialist  in St. Louis gave us the names of a few ENTs in North Carolina.  I did my research and decided on an ENT at Wake Forest Baptist Medical Center in Winston-Salem, NC.  I figured that if we didn’t ‘click’ or if this was out of the doctor’s realm of expertise, we could always try one of the other doctors on the list.  Wake Forest Hospital is about an hour and a half from Charlotte.  Back in the Midwest we were used to driving three hours from Champaign, IL to St. Louis, so and hour and a half seemed like nothing.

We met with Atticus’ Wake Forest ENT on August 13, 2012.  It was always a concern that we would get to the doctor and he would look at Atticus and say, “I have never dealt with this before.  I’m sorry, but I can’t help you.”  He didn’t though.  In fact, the ENT proceeded to tell us about another patient of his – a little boy – who had just undergone a tongue reduction surgery the prior year.  This little boy also has lymphatic malformation of the tongue.  I immediately felt better knowing that this doctor had seen this before, and was involved in other tongue reduction surgeries.

That day, we also met with a Plastic Surgeon at Wake Forest and she also seemed really confident in her ability to treat Atticus.  I liked their team approach.  The two of them (ENT and Plastic Surgery) would be Atticus’ main team of specialists.

Atticus was put on Propranolol, a medication typically used to decrease blood pressure  Propranolol has had good results in shrinking hemangiomas.  Atticus did not have a hemangioma though, but his doctors still felt it was worth trying.  It was pretty clear after a couple weeks that the Propranolol was not shrinking his tongue.  I wasn’t surprised.

At an appointment with ENT in late September of 2012, Atticus’ doctor dropped the bomb that he wanted to do the tongue reduction surgery soon, and by soon, he meant the following month.  We had still been thinking in the St. Louis model of not doing anything until after Atticus was a year old.  Not only did they want to do a tongue reduction surgery so soon but they also wanted to do a tracheostomy a week before the tongue reduction to ensure that there would be a stable airway during and after surgery, in case of major swelling.

That appointment really sticks out in my mind.  It was a lot to take in, and we just were not expecting this to move so quickly.  The idea of a tongue reduction surgery was a lot to digest.  I had never heard of anything like this before and it sounded rather barbaric.  A tongue reduction basically involves cutting a pie-shaped portion out of the middle of your tongue and sewing the sides of the tongue back together through the middle.  If you are imagining that being done on your own tongue, now imagine your tongue is about five times thicker.  Atticus’ tongue is a lot thicker than a normal tongue, so that is a lot of tissue that needs to be cut through and stitched back together.

Atticus’ doctor talked to us about the high risk of blood loss.  He explained that there is a large vascular component to Atticus’ malformation.  There last case of this was mostly lymphatic and since Atticus’ malformation is so vascular, they were worried about bleeding.

And then there was the trach.  I had thought that we passed that hurdle.  We were nearly certain that Atticus would be trached right after birth or at least before leaving the NICU.  He proved that he could breathe on his own, so a trach wasn’t necessary at that time.  The reason for the trach now was because of the possibility of swelling after surgery.  I don’t think the idea of Atticus getting a trach really bothered me until the ENT said the words, “I want you to understand that Atticus won’t be able to make sounds once he has the trach, at least at first.”  That was it.  I started to cry.  I remember looking at Atticus in the doctor’s office.  He was on my lap.  He had just recently started making sounds and now that was going to be taken away.  We wouldn’t even be able to hear him cry anymore.

My parents came to Charlotte to be with us and help out during the tracheostomy and tongue reduction surgery.  We all drove up to Wake Forest Hospital very early on the morning of October 31, 2012.  On his first Halloween, Atticus was put to sleep and his doctor inserted a trach into his neck.  While he was sedated, they also did an MRI to look at the malformation and see if it had spread at all and to see if it was still isolated to the front of the tongue and lower lip.  It took a while to perform the trach and do the MRI but finally we were able to see him.  He was in the Pediatric Intensive Care Unit (PICU) on all sorts of machines and tubes.  Seeing him like that was more intense than I was expecting.

The sedation started to wear off after a while and I remember Atticus looking up and starting to cry.  Only, no sounds were coming out.  I don’t even know how to describe it besides unsettling.  To see his face crying but not hear the cries…made me cry.  The Plastic Surgeon stopped by his PICU room that evening and she could tell I was upset.  I can’t even remember what she said but I remember her putting her arm around me and saying something that made me feel better.

Atticus was moved to Intermediate Care after a couple days and me, Bri, my mom, and dad all spent the next week hanging out with Atticus in his hospital room.  He would need to stay hospitalized for the next week while his tracheostomy healed and then the following Wednesday, November 7^th would be the big surgery – the tongue resection.

A few days following his tracheostomy, he was back to his normal self (except now breathing through a trach).  He seemed to get used to the trach very quickly.  Brian and I took the next week to learn everything we possibly could about trach care, including changing a trach which involves taking the trach completely out and inserting a new one.  That seemed really overwhelming at first but after a few times, it wasn’t so bad (now it’s so routine that we don’t even think about it).  All of the nurses in Intermediate Care quickly fell in love with this truly bouncing baby boy (we brought his Jumperoo to the hospital so he’d have something to do for the week).

Then, on November 7, 2012, Atticus underwent his tongue reduction surgery.  After trying to keep his mind off of not eating all day, they finally took him back to the operating room around 4pm.  The surgery took around two hours.  Me, my mom, my dad, and Brian were all sitting in the waiting room when the ENT and plastic surgeon came out to tell us how everything had gone.  Atticus had bled…a lot.  Atticus needed a blood transfusion, but he was doing well.  They removed as much of his tongue as they possibly could without compromising his tongue’s range of motion and other things.  We were immediately relieved to hear that everything had gone well.  The only thing that worried me was the risk of blood loss, but now that my fears were put to rest on that, I knew that everything would be OK.

It felt like forever, but we were finally able to go back to see him in PICU.  He was heavily sedated and also on paralytics so that there would be no risk of him messing with or trying to pull out the stitches from his tongue.  We were told to expect a lot of swelling and that it could take months for his tongue to go down to the size that it would now be.

Atticus spent three entire days completely sedated.  On Saturday, they started easing up on sedation and paralytics.  By Sunday, he was awake, but in a lot of pain.  I can’t even imagine the pain that he must have been feeling.  He had just had more than half of his tongue cut off and sewn back together.  The hardest part post-surgery was seeing him in so much pain.  Since he was so young (6 months exactly on the day of surgery), there was no way he could verbalize his pain, but you could just tell.

It was during that time at the hospital that I realized what a strong baby I had given birth to.  He had already gone through more in his 6 months than most.  He spent a total of three weeks in the hospital and ate through a feeding tube for about a month after surgery.  We were told that the recovery would be tough and that there would be bumps along the way.  Atticus did so well though.  The stitches all came out naturally.  Everything stayed intact, and the swelling eventually subsided.

He is a true fighter and always has a smile on his face no matter what.  Even with feeding tube, trach, arm restraints, and stitches in his tongue, he still smiles through it all.

11/23/12

12/6/12