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.
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.