Interstitial Laser Treatment

Atticus had an appointment with ENT today to discuss his upcoming interstitial laser treatment.  We had a lot of questions going into the appointment, and some were answered, but because of the nature of lymphatic malformations, no doctor can ever answer every question.  There will always be unknowns, and that is just something that me and Brian have learned to accept and be OK with.

I had done some research on interstitial lasering of venous malformations, so I went into the appointment knowing a little bit.  First, I have to explain that I’ve been calling Atticus’ malformation a lymphatic malformation, which is sort of the general term, but his actually has a large venous component and probably only a small lymphatic component.  I guess technically, it is a mixed venous lymphatic malformation.  There’s a whole classification system that was developed by Mulliken and Glowacki in 1982, if you’re interested.

Table 1.: ISSVA Classification of Vascular Anomalies

Vascular Tumors	Vascular Malformations
	Simple	Complex	Flow
Hemangioma Pyogenic granuloma Hemangiopericytoma	Capillary (CM) Venous (VM) Lymphatic (LM)	Lymphatico-Venous (LVM) Capillary-Lymphatico-Venous …	S L O W
Hemangioendothelioma Tufted angioma	Arterial Arteriovenous (AVM)	Capillary-Arterio-Venous …	F A S T

I’ll try to simplify the classification.  Vascular anomalies are a heterogeneous group of congenital blood vessel disorders.  These can be broken down into vascular tumors (the most common vascular tumor being hemangioma) and vascular malformations.  Vascular malformations can be lymphatic, capillary, venous, arteriovenous, or some combination of these.

Because Atticus’ malformation is venous lymphatic and goes deep into the tissue of his tongue, he is a candidate for interstitial laser surgery, which penetrates deeper into the tissue than a surface laser does.  Atticus is scheduled for his first treatment of this type on January 29th.  They will use an Nd: YAG laser and will enter the tongue with a catheter, which the laser will pass through.  They will probably laser two spots on each side of the tongue for a total of four spots.  Atticus’ team of doctors has not performed this specific type of laser treatment before, so they will be conservative on the first treatment and be more aggressive in future treatments, after they see how he responds.

No doctor has done a ton of these treatments because it is just not very common.  However, Dr. Gresham Richter in Arkansas has probably done more than any other doctor.  We are lucky that Atticus’ doctors have a direct connection to Dr. Richter and are consulting with him on the specifics of the procedure.  Atticus’ team of doctors feels comfortable and confident in their abilities to perform the procedure.

We asked about risks of the treatment.  The major ones seem to be internal bleeding in the tongue after the procedure, or the possibility of hitting a nerve in the tongue.  There are really no new risks to this procedure over any other procedure Atticus has already had.  We are expecting swelling, which will affect eating, so we will see how to deal with that after the procedure.  Because Atticus has a trach, swelling affecting the airway will not be an issue.

The most we can hope for is some shrinkage to the tongue.  We are not sure how much shrinkage to expect.  They are going to be conservative in their first treatment, so really, only time will tell.  We have to be patient and positive – two qualities that we quickly learned to embrace after Atticus was born.  There are no quick fixes or easy answers when dealing with vascular malformations.  At this point we are all too familiar with the answer of “I don’t know” from doctors.  While this can be unsettling, we appreciate the honesty of Atticus’ doctors.  For now, we just take it one day at a time, stay positive, and hope that this treatment will make a difference.

Thanksgiving 2013

Sorry I have been MIA, but the past couple weeks have been CRAZY!  We traveled to Pennsylvania for Thanksgiving and that is a LONG drive.  Throw in some snowy weather and a very active 18 month old and it makes for a somewhat stressful trek.  Every mile of that drive is worth it though.  It’s not always easy living 700 miles away from all of your family, but we will not let that get in the way of seeing them for holidays.  I like to think of it like, “at least it IS driveable!”.  Anyway, Atticus had a great Thanksgiving (as did me and Brian).  What a difference from last Thanksgiving.  Not that we didn’t have a great Thanksgiving last year too – it was just very different.

Last year, Atticus was discharged from Wake Forest Baptist Hospital the day before Thanksgiving (he had tongue reduction surgery on Nov 7, 2012).  So, we were headed back to Charlotte with our newly trached 6 month old last year on Thanksgiving eve.  When we got home, we were quickly overwhelmed by all of the new things that we would be dealing with:  medical supplies, medical equipment, home care nurses, etc.

And, since Thanksgiving was the next day, Brian and his mom ran out to the grocery store that Wednesday night with the hope of still being able to find a turkey!  So there I was – just me and Atticus, his new (smaller) tongue, his trach, and his feeding tube.  It was an overwhelming time, but the uncertainty leading up to Atticus’ birth taught me the extremely valuable lesson of just taking it one day, or even hour, at a time.

Someone from the medical supply company came to set up Atticus’ oxygen supplies (in case of emergency), his suction machine, and his trach humidifier (for use at night when he sleeps).  Then two nurses from the nursing agency came and we answered a million questions and got set up with our nurse for that night.  It’s a big adjustment getting used to having a stranger in your home,especially a stranger who is going to help take care of your child.  This particular nurse never came back after that first shift.  It’s not that we didn’t like her.  She was very nice, but she kept treating Atticus like he was so sickly.  It was like she was pitying us.  Even though this was all so new to me, I knew right away that anyone who perceived my child as ‘sickly’ is not someone who I wanted to be around him.  Atticus is so healthy.  He just happens to have a large tongue which required survery (and thus, a temporary feeding tube, and trach).  There is nothing sickly about him!  He is the picture of health.

I look back on everything we have learned in the past year, and it is hard to believe that so much could happen in just one year.  Taking care of Atticus’ trach is like second nature to us now.  I never thought I would be so comfortable with all of the extra care that his trach requires, but you quickly learn to adapt, especially when you really have no other choice.  We are so lucky to have, after some trial and error, great home care nurses who are so devoted to Atticus and are almost like part of the family.

This Thanksgiving was so special because Atticus was healthy and we were able to travel home and be with family.  There was so much to be thankful for this year, and Thanksgiving is a day when I really stop and think about all of those things.  Sometimes holidays can be stressful, and people get caught up in things that really aren’t that important.  Atticus is a constant reminder of what is important in life, and I’m so glad that I have him to keep reminding me never to sweat the small stuff.

After he was born, it was like a switch was flipped and I immediately stopped getting caught up in petty things that really don’t matter.  I feel so much more easy-going and I don’t let myself get bothered or upset by things that I can’t change or that I have no control over.  I am so much more laid back now (even though, I technically have more to worry about now than I did then), but the only way I can describe it is a switch in my brain that was flipped.  I’m happy to say that a year and a half later, that switched is still flipped.  I’m still living my life the way that Atticus taught me to live.  Even throughout the stress of dealing with lymphatic malformation and what is still to come, or the stress of working full-time, I just keep it all in perspective.  I don’t worry about work.  That’s not to say that I don’t care about my job – I do.  I am a very conscientious worker and I take pride in my work.  But, I have just made the decision to not stress over it.  I do the best that I can, and get as much done as I can in 40 hours per week, and that is all I can do.  I won’t stress over not getting everything done or meeting an impossible deadline.  After all, what is the worst that could happen?  I think back to not knowing what was wrong with my unborn child, and nothing at work will ever compare to that feeling.  Compared to that, most things in life are small potatoes.  That is my new basis of comparison and it keeps my switch flipped – flipped to the ‘life is good’, ‘be positive’, ‘things will work out’ position, and that is exactly where I want it to stay.