Maria Deysi's Story...


Maria Deysi Aguilar was born on March 15th, 2003, in Okinawa, Bolivia (in the department, or state, of Santa Cruz). She is her mother's third child and only girl. When she was three months old, her mother left their dwelling (a wooden structure with a tarp roof) to look for food, leaving Deysi and her two older brothers alone. As it was a cold night, she had left the embers of their cooking fire burning. A stray spark made it up to the tarp, which caught fire and began to melt and drip onto the dirt floor of their home, where Deysi was sleeping, wrapped in a blanket. The only exposed parts of her body (her face and hands) were severely burned by the burning, liquid plastic of the tarp. By the grace of God, Deysi and her mother made it to the city of Santa Cruz (a two-hour drive) and Deysi spent four months in the burn center at the city's childrens hospital. After two skin grafts and many weeks of painful recovery, she was finally released, but after realizing that she was unable to adequately care for her daughter, Deysi's mother chose to place her in the girls orphanage "Hogar Sagrado Corazon" (Sacred Heart Home) in Montero, shortly before Deysi's second birthday.

How is she now?


Deysi is now 10 years old and will start fifth grade in March. She still lives in the childrens home "Hogar Sagrado Corazon" and is well loved by all. She has a sweet disposition and a quick, easy smile. She is doing well in school and is a hard worker, not easily frustrated and generally well behaved. She has been blessed by more frequent visits from her mother and brothers recently and continues to rekindle the bond that she has with them.

Her skin is completely healed (and has been for some time now) but the effects of the burn are still very noticeable. Deysi has never been self-conscious about her differences, but is approaching an age where those differences will start to matter more. In 2014, thanks to the generosity of Shriner's Children’s Hospital in Boston, and the skill and dedication of their professionals, she has undergone a second surgical procedure (on January 27th). This most recent surgery removed the nail bed of the thickened fingernail on her left hand and grafted skin from her leg onto the back of her left hand, allowing more movement in her fingers and replacing a portion of the scarred skin with her own healthy skin. She has also undergone the first of a series of laser procedures to gradually lighten the areas of (darker) grafted skin on her face. We are so grateful to Shriner's Hospital and to all those who have contributed to allow this second trip to become a reality!

Wednesday, January 29, 2014

All is well

We are done!  We are back in the hotel resting and grateful to not be in the hospital (though the doctors and nurses at Shriners certainly couldn't have done a better job of taking care of us).

The surgery lasted four and a half hours (!!) and was quite a bit more complicated than I had anticipated. Our surgeon did mention that he would see about a skin graft for her hand once in the OR, and he did in fact deem one necessary--I'm guessing that was the reason behind the long surgery time.  She had the graft taken from the back of her left thigh and it is the size of a large bookmark.  Everyone tells us that this will be what will hurt the most, but that it will dry out and heal within about a week--since the former has certainly proved to be true, I am hoping that the latter does as well.  The donor site has a sort of "fake skin" type patch on it but is otherwise unbandaged and we are required to keep it open to the air to help it to dry out as quickly as possible.  Her left hand is in a very large splint with a hard base and mounds of gauze wrapped around it almost up to her elbow, all in an effort to protect the skin graft and stitches on the back of the hand, in between her second, third and fourth fingers, and around the nail bed of her ring finger.  That all LOOKS worse to me, but she is very sure that what really bothers her is the leg (graft donor site).  Her face at this point doesn't bother her much, though it was painful for the first few hours after surgery (she had a laser treatment done on the scarring on her face) and though it looks quite dark and splotchy now, the effect will surely be good in the long run.

She did have a hard time coming out of surgery--she was (obviously) very disoriented and was (as the lovely attending nurse, who was so very patient, put it)--she managed to undo the bandage on her donor site within an hour of coming out of the OR, garnering her the nickname "Houdini" and causing some consternation for those that had to re-wrap her!  Once we got down to our room she had calmed considerably and, though she did have a bout of nausea once she started to really wake up from the anesthesia, our wonderful nurse was able to give her just the right amount of Benedryl to get her past it and into a nice, deep sleep for the night.

Today she started to feel much better once she was able to eat and drink, and we were able to leave the hospital after lunch.  Getting from the 7th floor, down to the parking garage (one level below ground), into the car, out of the car and up to the 3rd floor of the hotel with all our many belongings proved to be a bit tricky, but I just got her comfortable wherever that was possible and then made as many trips as it took.  We spent the afternoon resting and watching a movie (her) and doing some laundry and trying to figure out what to have for dinner (me).  We managed both fairly well.

Once things are a bit less painful and we start to venture out (and once she can be fully dressed most of the time!!) I will post a few pictures.  We really are well and so grateful to all those who have prayed for her and helped us to get this far.  Do keep those prayers coming for a speedy recovery--a Deysi who stays where you put her is a strange and unnatural thing, and we are both ready to have her back to normal as soon as possible!

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