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.

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!