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Re: How is Genesis doing?

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  • nosliwmas
    Dear CRL, Several have been asking me privately how Génesis is doing so I figured this is a good time for an update to the ongoing saga called, Las Aventuras
    Message 1 of 1 , Apr 13, 2013
      Dear CRL,

      Several have been asking me privately how Génesis is doing so I figured
      this is a good time for an update to the ongoing saga called, Las Aventuras
      de Génesis...

      In the upcoming week or so there is a group of surgeons from New York, USA,
      coming down to Costa Rica. I don't know if it is mainly a play-date for them,
      or if they've got a medical conference, want to go fishing, or what. But one
      thing I do know is they plan to help the surgeons at HNN (Hospital Nacional de
      Niños) with some of their more difficult cases. That includes Génesis, the little
      angel we've been trying to adopt who has several congenital heart defects
      resulting from drug abuse (mostly crack and alcohol) by the biological mother
      before and during the pregnancy. You can read more about it at:


      but the gist of it is that Génesis has 2 holes in her heart between the left-side
      and the right-side and she lacks a pulmonary valve -- there is no way for
      blood to flow directly from her heart to her lungs to get oxygenated. As the
      medical texts (both in English and Spanish, BTW) starkly put it, "This condition
      is not compatible with life."

      The Costa Rican surgeons, as good as they may be, have a 30-40% mortality
      rate for the type of operation Génesis needs. USA surgeons have a less than 1%
      mortality rate for this type of surgery. When we were told this by cardiologists
      at HNN we knew there really was only one viable option for Génesis and we've
      been working on getting an operation done in the USA every since. The NY
      surgeons, "gringitos" as they refer to them at HNN, coming down to do the
      surgeries in Costa Rica are now the best chance Génesis has to get her heart
      fixed. Turns out that Génesis had the misfortune to be born during an
      economic downturn and charitable contributions have been very slow in coming
      for the Wonderfund Foundation which has been helping us collect funds for
      getting the surgery Génesis needs done at the Holtz Childrens Hospital in Miami.
      I've been told this is a real serious problem for charitable organizations all over
      the place as one might expect...

      So we got scheduled for having a diagnostic heart catheterization done so the
      surgeons have a much better picture of exactly what is going on inside Génesis's
      little heart, and also to make sure that she is physically up for surgery. The
      first time we were about to make the trek to HNN to have this done they were
      kind enough to call us and let us know that the equipment in the cath lab was
      broken and there was no need for us to come. Fine. Thanks for calling, but
      time is getting short before the "gringitos" arrive and we MUST have this done
      before they get here so they can review her case and decide if she is one of
      the lucky ones they'll work on. Last week they called us and said they had
      repaired the equipment and if we could make it for a 7:00 AM appointment
      this week, we could get this done. 7:00 AM appointments at HNN are tough
      for Guanacastecos, but of course we said we'd be there. They told us it would
      be an all day thing...

      The morning of the appointment we got up at 1:30 AM, packed up Génesis
      and a full-day's worth of San José survival supplies and headed down the
      volcano in my trusty Galloper. It's a good 4+ hour drive to San José from where
      we live in Guanacaste if there are no problems on the road and this was one
      appointment for which we could not be late. The operating room/cath lab was
      reserved for this appointment and it was not like normal where we show up an
      hour or two late and they still fit us in for regular cardiology appointments...
      We make great time going down the coast towards Puntarenas over the mostly
      flat land. There are no traffic cops and very few trucks on the interamericana
      at 3:00 AM and it is a pleasant drive. We finally stop at our favorite bathroom
      in Puntarenas about 4:30 AM and when we get ready to leave... the truck would
      not start. I'm prepared for this. We are very accustomed to the torture our
      trusty Galloper is subjected to on the rough roads we drive, and I quickly fixed
      the loose battery cable and she cranked right up. We head over to Caldera and
      start up that fine new toll-road for our trek up the mountains and on in to San
      José. I've gotten where I don't enjoy the adventure of taking the Cabronero in
      the dark so much any more. The Pista del Sol is so much nicer I gladly pay the
      ¢1800 or so in tolls whenever we head to San José.

      As the rest of the family snoozes while we breeze on down the road, I'm
      thinking we'll get to San José early enough that I might be able to find a free
      parking spot near the hospital and avoid paying ¢10 mil or so for a full-day in
      my favorite parking lot... That lovely daydream was lofting through my predawn
      mind, when... <chunk> <flub-flub-flub...> a weird noise snapped me back to
      reality. It felt like maybe a flat tire as I started slowing down. Before we came to
      a stop <POW!> ¿WTF? (I usually cuss in Spanish now, so more correctly... ¡HP!)
      Felt like the back end of the truck fell off! As we came skidding to a stop, I see
      my rear wheel pass us on the highway and roll on down the road. I immediately
      lept from the truck and chased down our wheel and brought it back to where we
      stopped. No lug nuts to be found, I had broken brake pieces dangling from my
      axle hub and my truck was sitting awkwardly with the axle on the ground. I ran
      back down the highway looking for wheel parts and brought back all I could find
      while thinking about what could be done. Clearly the truck was the least of my
      concerns. We were an hour away from the hospital and had 90 minutes to get
      there for the one appointment in 20 for which we could not be late... If Génesis
      was to have any chance of getting surgery done by these NY surgeons, we had
      to make it to this appointment on time.

      While I start taking off broken brake pieces, to see what can be done, my wife
      spots a fellow walking down the highway in the predawn light. We ask him if
      he's got a phone-number for a taxi, which like all good Ticos, he does. She
      starts calling the taxi while I gather rocks to prop up the truck. Getting a truck
      up high enough to put a wheel back on when it is sitting on its axle is not what
      a normal car-jack is designed to do. I jack things up, prop them up, jack them
      up some more, prop them up some more. Pretty soon I've got the truck up high
      enough through the magic of balancing rocks and a totally extended bottle-jack
      that I can get the wheel back on just as the taxi shows up. I steal lug nuts from
      the remaining wheels and bolt our errant wheel back on with 4 lug nuts. I've
      already lost most of my brake fluid, but by pumping furiously and using the
      hand-brake I figure we can limp off the highway back to Orotina. We've got
      family in Orotina and my plan is to park the truck and race for the hospital in the
      taxi. I'll come back later and deal with the truck. The taxi driver knew where our
      family lives in Orotina. I asked him about talleres nearby and he said he knew
      a good one that could probably fix my broken truck. They were closer than
      where our cousins, etc. lived so we drove slowly through the streets of waking
      Orotina to get to the taller. I parked the truck in front of the taller, and when
      the mecánico's dad who lives across the street came out to see what was going
      on, I explained what happened, gave him the keys, showed him where the extra
      wheel parts were and then we jumped in the cab for our race up the mountain
      to HNN. Génesis was still asleep in her car-seat oblivious to battery cables, loose
      wheels, cab-ride, etc.

      With adrenaline still coursing through my veins, I'm in a chatty mood and so the
      cabbie gets to hear the whole story about Génesis and why it is so important
      that we don't miss our appointment. He kicks it up a notch and we are flying
      down the highway as fast as his little Hyundai could go. As we approach San
      José the cab-driver is worried that we might get bogged down in traffic, so he
      suggests that we call the hospital and tell them that we might be late. I had
      already calculated that we might not be TOO late, maybe only 10 minutes or so,
      and tell my wife that it is better to hold off calling them. It is too easy to tell us
      over the phone that we lost the appointment and that it would be better to risk
      it and just show up. It would be much tougher to tell us to our face that we lost
      the appointment. We go for it.

      Our cabbie navigates traffic like a NASCAR pro and even showed me a new back
      route to HNN that I had never tried. We pull up to the emergency entrance to
      the hospital right at 7:00 AM on the dot and jump out of the cab loaded down
      with all of our San José survival supplies that normally I would have left locked
      up in the truck. For the first time in 5 visits the guards don't hassle us about 2
      parents going in for the appointment -- the last time I almost got in a fight with
      them because I insisted I was going in and they insisted that only the mother
      could go in... We rush up to cardiology to check in just as I hear the doctors
      saying, "¿Where is Génesis? Ah, there she is..." I'm still all greasy from fixing
      the truck so just do the back-of-the-arm-shake thingy with them. While my
      wife wraps up the check-in, I head off to the bathroom to change in to the set of
      spare clothes I keep packed in my San José survival kit and I return a clean man.

      With Génesis starting to dose off in my arms from the knock-out dose they gave
      her, we head on down to the cath lab. I carry her right on in and help the nurses
      get her strapped down on the operating table and calm her as she wakes up a
      little while they are trying to find a vein for the IV. The operating room was the
      prettiest room I've seen in HNN. It was air-conditioned, they had the surgeon's
      favorite mood music playing on the stereo and everything. I notice all the used
      equipment by the US hospital labels indicating this thing came from St. Jude's,
      the other thing came from St. John's, etc. I'm just thankful that the stuff is back
      in working order enough for this most important appointment of Génesis's life.
      When the surgeons came in to do the heart catheter, I leave. I'd normally ask
      about staying, but there was obviously not enough room for me and it didn't look
      like there were enough lead-aprons to go around.

      An hour later, after what seemed like 15 times of the red hazard light coming on
      outside the door, they opened the door and wheeled out a dreamy Génesis. She
      saw her mother and I waiting for her and whispered in her little baby girl voice,
      "paapaaaah..." Then she blew a kiss at her mother as she got whisked up to

      We spent all day from 10-ish to 4:00 PM in the recovery ward. In 30 minutes or
      so Génesis was ready to go, and fighting to yank off oxygen tubes, and various
      heart monitoring equipment. She's not quite 1 year old, but she is strong. I
      finally told the nurses I needed 4 hands to keep both her legs still and both her
      arms still at the same time. They tied her legs to the bed and I dealt with her
      hands. After fighting for a while she got tuckered out and dosed off in a
      peaceful sleep and we all relaxed. Finally about 3:30 PM the surgeons came in
      to check on her and gave us the best news: blood pressure in her pulmonary
      arteries was not too high to operate and her pulmonary arteries seemed to be big
      enough and strong enough to operate. They got great pictures of the anatomy
      of her heart and confirmed that the Blalock-Taussig Shunt she got almost one
      year ago was still functioning well. Physically she was ready for the operation.
      Now we wait to see if the NY surgeons accept her case...

      As we're leaving the hospital, we ask the guards if they know where la parada
      for buses going to Orotina or Jacó is -- of course it is the Coca-Cola. Thankfully
      only a few blocks from HNN. We trudge on over to the Coca-Cola bus terminal
      loaded down with baby and San José survival kit like a family of Gypsies. We find
      our bus and plop our weary bones down in a pair seats on what should be the
      shady-side for the long ride back to Orotina. Back in Orotina, we are pleased to
      find that the bus terminal is only a block or so from where we parked our truck
      in front of the taller more than 12 hours earlier. The taller was closed already, but
      the mechanic was waiting for us in front of his dad's house and our truck was fixed!
      He said he was able to use all the broken pieces I gathered off the highway and
      only had to buy some little thing that was easy to find. The mechanic was a
      friendly chap, he didn't try to stick it to us during our time of emergency, we
      invited him to our place for a beer or café if he ever got up to Guanacaste, and
      I cranked up the trusty Galloper for our long haul back to Guanacaste. 3+ hours
      later we manage to make it back up our volcano and pulled in to our driveway a
      little bit before midnight. Génesis, asleep once again, has no idea how hard of
      a day her parents-wanna-be had.

      Now we wait to see if the "gringitos" accept her case and can do the open-heart
      surgery Génesis needs to survive into her teenage years. She's a super-intelligent
      little girl and it would be a devastating loss for the world if she doesn't make it.
      I expect that she'll grow up to do great things, and Costa Rica will be a much
      better place with her help in the future. Perhaps she'll become a surgeon herself
      to better the odds Tico babies with complexities have or a scientist or something.
      At times I wonder how much she is lacking from being a "crack-baby". Maybe
      she would have been a super-genius? Sólo Dios lo sabe... In the meantime I'll
      just sit back and grin like a crazy man every time she says, "paaapaaaah..."

      Sam - "To save the lives of children without other options..."
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