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

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

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.