The Patient Patient

The days leading up to the second surgery of her short life, and the first in a series of many, was just a tad bit unnerving for us big people around here. Luckily the little person could not have been a more patient patient and was just overall wonderful that day helping us all survive.

One of the tricky parts was devising a plan to distract our hungry little hedgehog during the mandatory fasting period so over some ducky tub time I explained that it would be in her best interest to schedule one of her frequent wakings sometime before midnight, and sure enough at 11:30 on the dot she wiggled and sqiggled just enough to give me the thumbs up! My mom took the harrowing 12 to 5 shift (reflux es no bueno) before we all packed up for the drive to SD. So far so good.

I swear this kid knows something about the world that we do not because once we got there she started smiling and singing her same sweet tune that she had the last time we visited the hospital. After a long, drawn out registration process and some song and dance on our part to distract her while we waited past our appointment time. Despite her growing hunger, she sat patiently on her daddy's knee listening intently to all the doctor had to say before the nurse came in for that dreaded moment to take her away. She didn't cry in her arms as we watched our little girl be marched down to the OR for the second time in her short life and subsequently my heart shattered into a million pieces. Luckily Mark was there to swoosh what was left of me to the waiting room and  over an hour later they let us know it was done and she was awake 40 minutes after that before we could go in and see her. She was hungry, bruised and ready for some snuggles but after a good meal and a little tylenol she was back to herself within the hour and she left the hospital the way she came in, singing and smiling.

Since all this is so foreign to us and almost everyone around us (I mentioned this is WAY rare, right?), here's the top 5 things we get asked and some info on what just went down:

1. Why does she have to have this? 

Her port wine stains on her legs and back will continue to grow and progress over time, which could become very disfiguring and cause some additional health concerns. We've heard many times that the parents that opt out of the standard treatment mean the kids themselves come in begging for it later in life when it is more painful (think more surface area) with less chance of success.

2. What will these procedures do? 

They are laser procedures that destroy some of the extra capillaries in the areas that cause the pws.

3.  Why do they put her under? 

The laser pulses themselves feel like a snapping sensation on your skin but leave very little (if any) discomfort after its done. Some kids (and older kids) have it done awake, although it is unpleasant it is brief. Because of her age and because her pws cover so much area doing it awake wasn't really an option.

4. Is it only cosmetic?

No, we like spots, we don't like what they turn into over time and how that would affect her life. You get WAY better results on an infant than on an older child.

5. How many will times will she have to do this?

For the immediate future - 4 to 6 times with some treatments throughout the years for maintenance. It won't remove them but we hope for 50-70% lightening.