1st Treatment at Arkansas Children’s Hospital

Atticus had his first treatment with Dr. Richter at Arkansas Children’s Hospital last Tuesday, September 2nd.  He received his first round of bleomycin injections into his tongue, laser treatment on his lower lip and tongue, three bottom teeth extracted, tonsillectomy and adenoidectomy.  Click here for some very good information regarding bleomycin injections for lymphatic malformations.

Pre-Surgery; 9/2/14

Pre-Surgery; 9/2/14

We flew out the day before, stayed in a hotel Monday night and then headed to the hospital on Tuesday morning.  Surgery took about an hour.  Atticus was very disoriented afterwards and needed morphine.  Tuesday night he was pretty out of it.  He ended up staying in the hospital until Saturday morning because his pain was very bad and he wasn’t eating or drinking much.  We had to force him to drink via syringe and by Friday we were getting enough fluid into him where they felt comfortable discharging him early the following morning, which was nice for us because our flight back to Charlotte was Saturday morning.

His tongue got very swollen after surgery and probably peaked around 48 hours post surgery.  Each day it is slowly going down.  Atticus was prescribed a steroid to help with the swelling.  We are thinking the swelling will probably last 2 to 3 weeks and then we will excitedly wait to see what the results of the bleomycin might be.  We recognize that it may take several treatments.

It seems as though most of the intense pain that Atticus was feeling was probably from the tonsillectomy – so luckily he will never have to feel that again!  The pain stayed pretty intense for about 5 days and now is slowly easing up.  He ate really well yesterday – oatmeal, waffles, applesauce!

The next step will be more laser and bleomycin injections probably sometime in December.

And, I cannot end this blog post without expressing how impressed I am with Dr. Richter and the staff at Arkansas Children’s Hospital.  I feel so confident and at ease knowing that Atticus is in such good hands.  At no point did we feel like just a number, even though I’m sure Dr. Richter is insanely busy.  He checked in on Atticus so much while we were there and is so compassionate and easy to talk to.  You can tell he really cares and is very passionate about what he does.

View from Surgical Waiting at Arkansas Children's Hospital

View from Surgical Waiting at Arkansas Children’s Hospital

New Chapter

Wow!  What a crazy past week it has been for us.  In an effort to make sure that we are doing everything possible for Atticus, I made an appointment for him to see Dr. Gresham Richter at Arkansas Children’s Hospital’s Vascular Anomalies Center for Excellence.  We have been very happy with Atticus’s current doctors at Wake Forest and we feel that he has made amazing progress under their care, but because Lymphatic/Venous Malformation is so complex and rare I always felt that at some point Atticus would need to be seen by a doctor who specializes in LM.

We have been hearing about Dr. Richter ever since Atticus was born in St. Louis.  We were so excited to finally meet him and for him to meet Atticus.  He had heard of Atticus before, but we were excited for him to actually see Atticus.

We drove 1,520 miles round-trip, stopping over in Nashville on our way out and our way back home.  Every single mile was worth it.  We spent about three hours at the Vascular Anomalies Center on Monday, July 14th, meeting with Dr. Richter, his resident, and nurses.  Right away, Dr. Richter said that Atticus needs more than just interstitial laser.  He started telling us about multiple treatment options, which made me so relieved because I didn’t realize that there were still so many options.

For the first time since Atticus was born, a doctor spoke to us confidently about the treatment of LM and gave us hope that the procedures would work.  It is so nice to finally have answers and a positive outlook regarding the treatments.

The treatments that Atticus will have will occur mostly over the next two years.  For the next two years, the treatments will be aggressive and we will need to travel to Little Rock probably every two or three months.  After two years, treatments will become more spaced out.

Atticus’s first surgery in Little Rock is scheduled for September 2, 2014.  He will have his tonsils and adenoids removed, as these are making the malformation worse.  Dr. Richter will also extract Atticus’s front bottom teeth, as they have become damage by the pressure of the tongue, and are making the malformation worse.  Atticus will also have laser treatment on his lip, and will also receive two different types of injections into his tongue.

The first type of injection is called doxycycline, which is an antibiotic.  Atticus’s LM is microcystic (versus macrocystic), so a very small needle is used to inject the medicine into the microcysts.  The second type of injection is called bleomycin, which has been used to treat many conditions.  At very high doses, it can lead to lung damage, but the dosage that Atticus will get is very small.  The point of doing two different types of injections is to see which one shrinks the tongue more.  Doxycycline seems to be the safer drug, so if the results are similar, I think that would be the choice for future injections.

Future treatments will include additional laser treatments, more injections, another lip reduction, and another tongue reduction where he will take out tissue from the middle of the tongue.

Dr. Richter also feels confident that Atticus’s trach can come out a lot sooner than we were thinking.  This is really exciting to us after being a trach family for almost two years now.

So this is the beginning of Atticus’s new journey.  We are very excited to get things started.  We know the next two years are not going to be easy, but in the end, it will all be worth it.

 

 

Lip Reduction Surgery – June 18, 2014

Atticus had his first lip reduction surgery on June 18, 2014.  His plastic surgeon removed tissue from the inside of his bottom lip, tightened up some stretched out muscles, and stitched up the incision with three layers of stitches.  Over time, the scar tissue may help to curl the lip upward.  The focus of this lip reduction was on the inside of the lip.  Atticus will need other procedures done to the outside of the bottom lip and possibly more surgeries for the inside of his lip.

Atticus spent one night in the hospital.  He ate and drank with no problems after surgery.  It is really amazing how well he is able to eat post-surgery.  Nothing gets between Atticus and his food!  Because he ate and drank so well, and was responding to the pain medication, we were able to go back to Charlotte the next day.

Of course, as with any surgery, the bottom lip is currently swollen.  It usually takes a few weeks for all of the swelling to go away.  Once all of the swelling is gone, we will be able to see the true results of the surgery.  It may take a month or so for all of the stitches to fall out too.

Atticus had quite a bit of pain in the days following surgery, but now he is almost off pain medicine.  He is pretty much back to his normal self.  Every once in a while he points to his lip and says, “It hurts.”  But that is usually when we are cleaning it or applying Normlgel to it.

So far the healing process is going very smoothly.  Atticus is not bothering the stitches.  The only things we really need to do are clean the lip with sterile medical sponges after meals, apply Bacitracin twice daily for about one week, and apply Normlgel as needed to keep the lip moist.

We are eager to see the true results in about a month!

 

New Research Series

My very clever husband, and creator of the website Charlottology, has inspired me to add a new dimension to this blog – one where I search for medical studies relating to lymphatic malformations and create summaries based on what I find.  This will hopefully serve as a resource for people to quickly learn about the latest research concerning lymphatic malformations without having to actually read the lengthy medical journal articles.

I do not have any formal medical training, however, once you have a child with any type of medical condition, you tend to, over time, become an untrained expert in that area.  As I learn more about lymphatic malformation, I become fascinated with it, and want to learn more – especially about treatment options and the research that has been done on various treatments.  What has worked?  What hasn’t?  Which treatment options have the best success rates for the different types of vascular anomalies?  These are all things that I have researched.  I have found some really good articles from medical journals, and I want to share what I have found out with all of you.  I would also like to continue learning about LM and stay up-to-date with the latest research.

This new series will also feed my love of research, data, statistics, and my new love of the medical field.  I am a research/data analyst by training, and nowadays most of my work consists of SAS programming to analyze community college data (which I love!) but I do miss reading peer-reviewed research.  Throughout graduate school, my research area focused on perfectionism, life stress, and sociocultural influences on body dissatisfaction – and that was fun – but my interests have certainly shifted since graduate school.

My professional interests currently consist of data analysis in higher education to inform decision-making (aka Institutional Research), which I really love, but lately I am also interested in medical data analysis.  This series will also feed this budding interest of mine and seek to inform my readers about what is going on in the research world of lymphatic malformation.

I am excited to get this started…more to come soon!

Kennedy’s Cause

Kennedy is a 16 year-old girl who was born with lymphatic malformation.  She is an inspiration and through her non-profit organization, Kennedy’s Cause, she is raising awareness and funds to help improve research and treatment options for others with lymphatic malformation.  The message behind her cause is ‘Let your inner beauty shine’.  She was recently featured on Katie Couric’s talk show.  Even Katie Couric, who I’m sure has met tons of people, says that she had never heard of lymphatic malformation before meeting Kennedy.  I am so happy that Kennedy was featured on this show, first to bring awareness to LM, but also so that people can see that individuals with lymphatic malformation can and do lead happy and productive lives.  Kennedy is an accomplished violinist and volleyball player.  Nothing stops these kids – at an early age they learn to be strong and push through obstacles that others will never know.

I am happy that lymphatic malformation is finally getting some awareness.  Click here for the video of Kennedy on Katie Couric!

Ommm Yoga!

There are lots of things that I love in this world, and two of them are fitness and peacefulness.  I love that I have found a way to combine these two things – feeling peace of mind while doing something physically healthy for your body – YOGA!  I know this is nothing new – yoga has been around for centuries and has been popular in the United States for decades now.  I took my first yoga class probably around five years ago, but it didn’t truly resonate with me until more recently.  I think you need to be mentally prepared to experience yoga to its fullest.  When I used to do yoga before, I was in it more for the exercise and wasn’t really interested in all of the mindfulness.  I have changed a lot though in the past couple years and now I am ready to embrace all that yoga has to offer – both physically and mentally. It also helps that I have found a studio that I really love.  Every time I go there I feel like I get an amazing workout but that I also come away with a more positive outlook on life and a feeling that I want to strive to be a better person.

I have a somewhat long history with fitness.  I remember lifting weights in my parent’s bedroom when I was 10 years old.  Being physically strong was modeled for me as a child – my dad ran every day and lifted weights on a regular basis too.  I’ve always been big on strength and have been weight lifting on and off for the past 6 or so years.  There are so many forms of exercise that I really love, but yoga is the only one that I’ve found that gives me a complete totally body workout, including a workout for the mind and soul.

I feel so at peace especially as the class winds down and you come into shavasana, which means you lie on your back with your arms and legs spread at about 45 degree angles.  Your eyes are closed and you are breathing deeply.  How often do we just lay quietly and let go of everything?  I love that yoga allows for this.  It allows you to let go and release all of the stresses and anxieties of everyday life.

Another thing I love about yoga is that all you need is a mat, or really just a non-slip surface.  All of the strength that you are building is coming right from your own body.  You don’t need a gym and you don’t need 25 pound weights to build strength.  * Although I am still a fan of weights as well :)

If you take what you learn in yoga and actually use it throughout your life, yoga should also make you a nicer person.  When you find yourself rushing through the day or being negative, it’s like, wait…what did I learn in yoga this morning?  I need to implement that right now!  Yoga keeps me in check because, let’s face it, it is a journey to be a happy and positive person.  We live in a world where people love to complain and where people often fail to see the positives and beauty of everyday life.  Yoga helps to keep you accountable and pulls you out of these traps when you might be slipping down a dangerous path of negativity.

Yes, I have found a studio that I love, but I also do yoga at home when I don’t have time to do a full class at a studio.  It’s important to me to practice yoga at home as well as at a studio, because if I am at home, I am modeling this for Atticus.  I want him to see that its important to make time to be healthy even in this crazy busy world that we live in.  As he gets older, I see him joining in and practicing with me.  I mean, he’s already almost mastered downward dog.

School Days

As you know from earlier posts, Atticus has had some interesting encounters with other children, where they say some mean and inconsiderate things about his mouth.  As a parent, you want to protect your child from mean words, and you might feel inclined to keep them in a little bubble where nothing negative will happen to them.  In this situation, I need to do the opposite.  I took those situations and realized that I need to start Atticus in daycare as soon as possible.  He is only two and receives nursing care at home, but his father and I think it is very important to start him in daycare early so that he can get used to being around other kids, and so that other kids can get used to his differences.  It’s very important to us that Atticus has experience with other kids’ reactions to him prior to starting kindergarten.  My hope is that once the kids get used to his facial differences, it just won’t be a big deal anymore.  Once they realize that he is just like them, and as silly and sweet as can be, the facial differences will just be part of who he is.  As Atticus ages with these children, they will start to ask questions, and Atticus will learn how to react, answer, and explain.  This will prepare him for when he starts real school.

I found an amazing school here in Charlotte and I am excited to say that Atticus will be starting at Open Door School in September.  This school is part of the Unitarian Universalist Church here in Charlotte.  They are very progressive and open-minded and were very welcoming when I explained Atticus’s situation, and that he would need to have a nurse there in case of an emergency with his trach.

I’m so excited for my little guy to start school and make friends.  Since he is an only child, it’s important that he gets to play and socialize with other kids.  He will go twice a week for three hours per day, which I think is perfect for a 2 year old.  I think it will also be a great way for Brian and I to meet parents, make friends, and build our social network here in Charlotte.

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