Laser Treatment

Atticus had his second laser treatment on September 4, 2013.  His first was on May 1, 2013.  In May, his plastic surgeon and ENT lasered both his tongue and lower lip.  The tongue and lip both swelled pretty bad (because of his tracheostomy, his airway was not a problem).  This time, they only lasered his lower lip, to give his tongue a little break.  His lip swelled pretty badly at first, but has gone back down.  Each time they laser, his lip should get a little bit smaller.  They will just keep chipping away at his lip and tongue.

When Atticus first got his tracheostomy back on October 31, 2012, we thought that he would only have it for about 6 months.  The thought was that by that time, the swelling from his major tongue surgery would be gone.  However, after his first laser treatment, Atticus’ ENT sat down with me and Brian down and explained an updated timeline.  He said that it would make more sense to leave Atticus’ trach in until all of these laser treatments are over, which would probably be another 3 or 4 years.  The new goal is to get Atticus’ tongue to a more management size by the time he starts school.  To do that, he will require laser treatments on his tongue and lip every 4 months for probably the next 4 years or so.

During that same meeting, the ENT also described the results of putting a scope down Atticus’ throat to check and make sure that the lymphatic malformation was still limited to the front of tongue and lower lip.  I was so happy to hear that the results of the scope showed no growth in the malformation, that I wasn’t even too upset about the updated timeline for the tracheostomy.

Sure, it may seem upsetting that my child will now have a trach possibly until he starts school. But, there are so many worse things that we could be dealing with.  I cannot change the situation, but I am in control of how I react to the situation.  I am not upset.  Instead, I am grateful that tracheostomies exist, as they have given so many people the opportunity to live and breathe, even with airway obstructions or other medical problems.

So for now, we keep going on our journey of laser treatments and trach changes, suctioning, and organizing medical supplies.  All of these experiences have already made me a better person.  Every day I am thankful for my health, the health of my child, husband, and family.  A day does not have to be extraordinary for me to be happy and grateful.  The minute I wake up, I am grateful that I am healthy and that I get to experience another day of everything the world has to offer.

The True Heroes

As I was driving to work this morning, I heard an amazing story on NPR.  It was one of those mornings where I’m glad I have a bit of a morning commute because I get to hear so many interesting stories on NPR.  It was about a doctor who treats children with brain cancer.  The story highlighted this doctor’s work on something called tumor paint, which would allow a tumor to glow so that surgeons can more easily tell where the tumor ends and healthy tissue begins.  It would make surgery less invasive.

This doctor also just sounds like an amazing individual.  I couldn’t imagine being in his shoes and having to tell families that their child is not going to make it.  He has had to do that many times, yet remains an optimistic person.  He said that he mourns the loss of every child but that instead of seeing tragedy in their deaths, he sees beauty in their lives.  Someone doesn’t need to reach the age of 90 in order to have lived a beautiful life.

“A child who is going to die from their cancer isn’t mourning the high school prom they’re not going to get to go to.  They’re not mourning the fact that they won’t drive their first car. For a child, it’s, are they happy? Are their parents happy? Are people crying in the room? Is a cute dog going to come in and visit them at 2 o’clock in the afternoon? It’s all about that moment, that day.” – Dr. Jim Olson

The story then turns to a mother who lost a child to brain cancer.  Hearing this mother talk was amazing.  Her perspective on life, even though she had lost a child, was admirable.  After being given the news that her child was going to die due to his brain cancer, she and her husband went behind the curtain near their son’s hospital bed and said ‘This is just like when you’re going to be dead.  I’m still here, you’re still there.  We just can’t see each other.’

Those parents are strong people.  How they were able to hold it together and teach their child not to be afraid so soon after getting the most devastating news that anyone could ever be given.

Those parents out there who deal with things of this nature are true heroes.  I started this blog for many reasons – to connect with other parents of children with LM, to chronicle Atticus’ story, to keep friends and family up to date – but not because I think that I am a hero parent or even close to being one.

Yes, Atticus was born with a rare condition and needs period surgery and has a tracheostomy.  But, my child is healthy, my child does not have a terminal disease, my child is smart and developmentally on point.  I am not a hero.  I am just a mother who deals with some extra things and who wants to spread awareness and raise a strong boy who will rise above despite his facial differences.

The parents out there who so bravely go through life after dealing with the death of a child and who are able to see the beauty in their child’s life and remain positive and happy for their children – they are the true heroes.

It’s Amazing How the World Works

It’s funny how things happen – how the world has a way of bringing people together.  We’ve been in Charlotte for a little over a year now and it was time for me to find an OB/GYN here.  I didn’t do my normal method of just picking a doctor based on location or convenience (although that was still a factor).  I really researched this one.  Especially since my experience having Atticus was nowhere near ordinary, I really needed to find someone who would listen to my story and be sensitive to my needs should me and Brian decide to have another baby.  I wanted my new doctor to be a woman, not be too young nor too old.  I researched how long each doctor has been in practice and where they went to medical school.  Finally, location mattered too.  Preferable close to work, since if we do have another baby, I’d be going to my appointments from work.

I finally found someone who looked good and I went to my appointment.  I explained everything to her – the ultrasound at 32 weeks with the large tongue, the fetal MRI, the EXIT procedure, the tongue reduction surgery.  I even went prepared with my print out explaining the EXIT procedure just in case.

I was surprised at the doctor’s look of recognition when I mentioned tongue reduction.  She explained that her best friend has a daughter with Beckwith-Wiedemann Syndrome and that this child was also born with a large tongue and has had a tongue reduction surgery.  Wow, I thought.  What are the odds of this.  We talked about being grateful for these kids and how well they are doing, and how she sees so many patients who really don’t know how good they have it.

The doctor consulted with her best friend to see if she would be interested in talking with me.  She was.  We met today for lunch and talked about our amazing children.  Her daughter is doing extremely well.  We talked about our experiences with tongue reduction surgery.  I never thought I’d be having this conversation with another mom over lunch.  We compared before and after pictures of our children, before and after tongue reduction.  She knew the feeling of trying to snap photos when the baby was holding their tongue in.  Not many parents know that feeling.

It’s interesting the way the world works.  I researched and researched my Charlotte OB/GYN and she connected me with a mother who I could talk to about things that no one else would understand.  This is something to be grateful for and I’m once again amazed at how things come together.

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