Moved, New Job, and 2nd Treatment at ACH

I’m not sure where to begin with this post.  And it might be a little disoriented (like my current mental state), but I’ll give it my best shot!  So back in July when we first had our consultation with Dr. Richter at Arkansas Children’s Hospital, we learned that Atticus would need treatment there every 2 to 3 months for the next approximately 2 years, and then treatments more spread apart after that.  This will consist of lots of sclerotherapy (bleomycin injections), laser treatments, another surgical tongue reduction, and multiple surgical reductions to his lower lip.  We were so excited (and still are) to learn of all of these treatment options for Atticus, but on our 12 hour drive back to Charlotte, it hit us – how would we pay for all of this?  How would we get the time off of work?  How can we both work full-time and travel to AR every few months?

During another 7 hour drive from Charlotte, NC to Washington, DC (this time for vacation), we started to re-evaluate our lives.  Long story short – we now live in Raleigh, NC – the Research Triangle of North Carolina.  We felt that job prospects and pay would be better there, and Raleigh is consistently ranked as a best place to raise a family.  This move also puts us around 2 hours closer to our family in PA.

I started a new job at North Carolina State University in their Office of Institutional Research and Planning and Brian is finishing up his semester at Wingate University, so he is back and forth between Charlotte and Raleigh, while me and Atticus are in Raleigh full-time.  Anyone who has ever moved knows all of the stress that comes along with that, so I won’t get into those details!

Me, Brian, and Atticus flew out to Arkansas on Thursday, November 13th and checked into Ronald McDonald House in Little Rock.  Atticus’s treatment was at 10 am the next morning.  When Dr. Richter first saw Atticus the morning of surgery, he was very pleased with the effect that the previous bleomycin treatment had on Atticus’s tongue.  Sometimes it is hard for me and Brian to tell since we see him everyday, so it is always nice to get someone else’s opinion on the tongue, especially when it’s the opinion of one of the best LM doctors in the world.

Another thing we learned on this past trip is that Dr. Richter is planning to take Atticus’s trach out on our next visit which will be sometime in January or February!  This is so exciting for so many reasons – traveling will be so much easier, Atticus will be able to be with other family members without us being present, he will be able to swim, no more medical supplies, the list goes on and on…

This was the first time that Atticus had a surgery that was done outpatient.  It was really nice not having to sleep in a hospital.  Hospital stay or not, though, the whole thing does take a toll – both on us and on Atticus.  He is getting older now, and more aware.  He still does not seem afraid of hospitals, doctors, or nurses.  He does get a little medicine to help him go back with the nurse to the operating room.  The injection/laser treatments take only about a half hour, and then Brian and I get called back to recovery.  I honestly can’t even remember, but I think Atticus was back in recovery for maybe 45 minutes and then an actual room for maybe an hour, and then we were free to go.

Seeing him in pain never gets easier and seems to be getting harder.  His tongue and lip swell up a lot after the treatments, and I am sure it is very painful.  You can see the pain in his eyes and his facial expressions and it breaks my heart.  He doesn’t eat well for days and is typically prescribed an antibiotic, a steroid (to help with swelling), and pain medication.  Administering the medications gets increasingly difficult as he gets older, stronger, and more aware of the fact that it is medicine, and medicine is no fun.

I know that I can’t go down the road of why  - why was Atticus born with this lymphatic malformation for which there is no cure, and why is there not an easier course of treatment?  As a parent, it is frustrating having to see your child go through so much for something that seems like it shouldn’t be a big deal – like being born with a big tongue.  I wish there was some magic pill that he could take to reduce the size of his tongue, that would spare him all the seemingly endless surgeries.  But I know that is just not an option – and we have to work with, and be grateful, for the options that we do have.  I try to be strong all the time – for Atticus, for myself, for Brian – but sometimes it’s OK to just let myself feel instead of always having to be strong.  Its OK for me to get upset and cry, as long as I pick myself back up and keep moving forward.

 

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.

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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!

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!

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