Life with Ostin

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The day after surgery, Ostin was discharged from the hospital and we drove from NYC to our home in Concord, MA. Ostin had adjusted to the car seat and was still rather drowsy, so the car ride went well. I had imagined he would need a few days to recover and would be “lying low”, but that certainly wasn’t the case. We soon found out Ostin is very active and into everything! Although he is almost three and a half, his behavior is more similar to a curious, experimental, defiant two year old who was now in a whole new environment and making up for lost time.

Ostin’s first discovery, the pantry in our kitchen where most shelves are in his reach and he went exploring. Next stop, the cabinet with a “lazy Susan” and all the spices and other ingredients he needed to shake and spread on the floor. We quickly realized we’d need to install child proof latches immediately! Things were moved to higher spaces and we learned our carpets are targets if he is without a diaper.

Soon it was time to give Ostin his medication which would become routine twice a day. We needed three adults to administer two medicines (antibiotic and steroid) in the mouth, drops in his eye, and an ointment on his lid, and it is still a challenge. Ostin goes “all out” in not letting any medicine enter his body…we hold his head, his arms, his legs and have a small towel under his chin for when he’s successful. Despite the reward of a little toy afterwards, Ostin continues to put up a good fight. During the day, if he sees a dish towel around, he associates it with medicine and yells “no vitaminos!”

After dinner, we helped settle Karla and Ostin into their new bedroom…it was nice to be home.

 

The big day finally arrives.

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Our day began bright and early, and we picked up Ostin and Karla at the Ronald McDonald House at 6:30 a.m. Ostin had been scheduled for an MRI which required anesthesia and therefore he couldn’t eat after midnight. We drove to NYU and spent the next few hours filling out forms, having the exam and waiting for the CD which we needed to take to Lenox for the surgeons to review prior to surgery. As soon as we had the disc in hand, we were on our way, and running late.

There is no way to rationalize with a toddler that he can’t eat before surgery. Ostin is still breast feeding, and he was hysterical and grabbing at his mother. We had to separate the two, and remove a wailing child into a small “cut through” between two hallways, which was separated from the other patients. We were hoping to muffle the sounds which were spreading into every waiting area. After a half an hour or so, Ostin exhausted himself and Tom’s soothing voice comforted him, and he calmed down.

At last he was ready for pre-op. The surgeons explained the operation, the anesthesiologist described his role, and Karla dressed in a gown, hat and shoe covers so that she could carry Ostin into the OR. There was an interpreter by Karla’s side who also provided support while Inside Edition was filming Ostin’s story. Karla remained strong as she carried Ostin away but when she returned alone, this is when she allowed herself to let the tears stream down. She was frightened and overwhelmed…we tried to reassure her he was receiving top notch care, and thankfully she has a strong spiritual faith.

The surgery took about three hours, and afterwards the doctors met with us to discuss their satisfaction with the accomplishments of the surgery. They were able to clean out the lymphatic build up behind the eyeball allowing the eyeball to fit back into the bony socket. He was left with a drainage tube close to his eye which helps remove any accumulation after the surgery, and will remain in place for up too four weeks. Ostin’s next surgery will be in March when the doctors will be focusing their attention on his cheek and neck.

Karla breathed a huge sigh of relief and expressed her appreciation to all the doctors and physician assistant. We then waited anxiously to hear from the recovery room that it was time we could visit Ostin.

Ostin’s first day in The Big Apple

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Ostin’s day began with the continental breakfast buffet. He was quite fascinated by the containers of cereal, pressing the button for juice, and spreading packets of butter everywhere! I don’t think he ate much but he found the experience quite entertaining. After things got a bit out of control, his mom took him back to the room where it was easier to manage him in a confined environment. We waited until the stores opened, checked out of the hotel and were on our way in search of sneakers for Ostin. It was a quick decision for him…the Cars far outweighed the Ninja Turtle ones.

We were then on our way to Lenox Hospital to meet the doctors. Thankfully, I have experience driving in Boston but NYC is more challenging with many roads under construction, snow piles, and using blinkers rarely happens.Tom joined Karla and Ostin’s first meeting with the doctors while I spent time finding a place to park. By the time I entered the hospital, the introduction and examination were finished and the doctors were back in the O.R.

Next stop, the Ronald McDonald House where Karla and Ostin were spending the night. The staff was incredibly kind but it was overwhelming for Karla as we toured the many floors beginning with their private room and bath. She was handed a “key” on a lanyard and showed that you just needed to wave it in front of the key pad and the door would unlock…magic! We then saw the dining room and kitchen facilities where each family is given their own cabinet for food, and bin in the fridge. A buffet dinner is served at 6:30, but I quickly thought how is Karla going to know the time since there’s no clock in her room and she couldn’t read my analog watch? They reassured me they would ask someone to stop by their room, and escort them. I wasn’t sure Karla would be comfortable leaving her room so I went to the grocery store while they spent time in the play room.

I quickly grabbed a container of watermelon, a bag of chips and salsa, a roasted chicken and a carton of milk…dinner was done. Back to the Ronald McDonald House to settle Karla and Ostin in their room. Everyone exhausted from “Day #1.”

Welcoming Ostin and Karla

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Ostin and Karla arrived safely to New York City. Although they’re both mobile, we had requested a wheelchair so that someone could help navigate them through immigration and customs in Miami. A couple who happened to meet them in Honduras, escorted them to meet us and handed me a small bag, smiling as she said, “this is all they have.” It didn’t surprise me at all, nor did seeing Ostin in sandals about to face the freezing cold. Part of me admires the simplicity, and how much I over pack every time I travel. But I also know the reality that Ostin does not have sneakers or other footwear, things we often take for granted.

As we headed to the exit, we handed them winter coats, but they didn’t seem too interested. Once we opened the door to the parking garage, the look of shock on Karla’s face was priceless. “Mucho frio” (very cold) as her eyes widened and she gasped in the cold air! She quickly grabbed the jackets and wrapped Ostin in his new quilt. As we opened up the car door, the next cultural adjustment to hit them…a car seat! We quickly learned Ostin is no fan of these and his piercing screams remind us.

Fortunately, it was a short ride to our hotel. I had reserved one room because I didn’t want them to feel afraid and alone, but I did wonder if this was a wise choice as we tried to settle in for the night. The night actually went better than I expected, and before I knew it I woke up hearing Ostin saying, “que es eso?, que es eso?” (what is that, what is that) as he stared out the window. A whole new world before his eyes as he stared at the street in New York City filled with cars, and buses and construction trucks (his favorite). He’d only been in the city for eight hours and was overly stimulated by the sights, sounds, and temperatures. The adventure had begun.

Anticipating Ostin’s Arrival

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For the past 14 years, Pilgrim Congregational Church, U.C.C. (Lexington, MA) has been involved with  our mission work in Honduras. Our minister, Rev. Loren Lorincz, and many members from our congregation have volunteered their efforts in our  “adopted” community of Flores. Countless members of Pilgrim have contributed their time by raising funds for projects, donating school supplies and clothing, offering their hospitality to visiting patients and so much more.

This past Sunday, we were presented with a hand made quilt created with welcoming messages from the church community. I can’t think of a more heart warming, comforting gift to offer Ostin upon his arrival, and something to snuggle with  during his many operations and recoveries.

Due to all the snowstorms, Ostin and his mom’s flights have been delayed two days. Cancelled flights are a real inconvenience for us, but it doesn’t compare to what it entails on the Honduran end. Ostin and his family live in the mountains and it is a challenge to reach their house because of the incredibly rough terrain. It’s a very time consuming endeavor for them to travel from their home to the airport in Tegucigalpa. This entails their family of four to travel on a single motorcycle, a bus and a taxi…any/all of which can break down at any given moment. Then they must face all the uncertainties and challenges of taking their first flight, which happens to be internationally. Not only is it juggling your tickets, passports/visas, going through security and finding your gate. It is making sure you have enough money to pay the taxes on the tickets, having the documentation for immigration, and paying the exit fees.

Karla is 20 years old, and tomorrow will say goodbye to her husband, older son and extended family. She leaves the familiarity and comforts of home to travel to the United States seeking more medical treatment for Ostin. We so admire her faith, resiliency, and deep sense of gratitude. We’re anxiously awaiting Ostin and Karla’s arrival and their reaction to seeing huge amounts of snow and the bright lights of NYC! Wednesday, we will meet with Ostin’s doctors and look forward to learning more about his operation on Thursday and what’s expected to follow…we’ve all been waiting for this day for a long time.

One little boy…one BIG hope for medical care.

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In November 2011 we were introduced to a 40 day old baby, named “Ostin.” His family knew we assisted with medical cases in Honduras and were desperately pleading for our involvement. Ostin was born with a malformation affecting his face and neck which was so swollen we feared he would suffocate to death if he didn’t receive immediate attention. Fortunately, we have built a close relationship with Peggy Kipps of the Ruth Paz Foundation in San Pedro Sula and she often guides us to trusted physicians. Soon, Ostin was on his way to San Pedro Sula for a physical examination and ultrasound. At that time it was determined he had a lymphangioma  and after consulting with physicians in Boston, the recommended treatment was injections of a drug called “OK-432″ which is made in Japan. The Ruth Paz Foundation assisted us in getting this drug shipped to Honduras in January 2012.

At first we were quite optimistic, after a few injections the swelling was reduced by 60%. But then we came to a standstill. The doctors in Honduras changed their diagnosis and began treating Ostin for a hemangioma by using a drug called vincristine. Unfortunately, Ostin did not show any further improvement and the physicians had met their limits and recommended he travel to the United States for medical treatment.

For the past two years we have been presenting Ostin’s case to numerous physicians and hospitals. It’s rather time consuming and requires much persistence,while walking the fine line of “keeping Ostin in the forefront of their minds, and trying not to aggravate them with frequent inquiries.” It’s a challenge emotionally…our hopes rise so high when we have expert physicians interested in helping, who then have to refer us to an array of other departments for review and approval, and then waiting many more months until finally be told the case is not accepted due to lack of funding. Frustrating for us, devastating for our patient’s family.

And then one day in August 2014, we received a call from the Ray Tye Medical Aid Foundation that they had found two physicians willing to operate and the foundation would cover the finances. EXHILARATION! We are in deep gratitude to everyone who is involved with finding treatment for Ostin including: Pilgrim Congregational Church, The Ruth Paz Foundation, The Ray Tye Medical Aid Foundation,  North Shore-LIJ Health System, and all the doctors and staff who have been and will be involved in his care.

Thank you for offering Ostin a brighter future. We look forward to continuing this journey along side him.

Privileged

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This morning I was once again reminded of how privileged I am. We arrived at Logan airport at 4:00 a.m. to send two of our patients (a.k.a. family members) back to Honduras. After waiting in a lengthy line, which included a long wait for people who had over packed their bags and spent 20 minutes shifting items (to avoid the over charge), we arrived at the counter. Once we began checking the children in, the agent told us there would be an additional charge of $150. Although I explained that I had been told at the time of booking of the set rate, she called her supervisor and told us she was following protocol, and we would be charged. I found myself really aggravated but also relieved, knowing I could pull out a credit card and pay.

This isn’t the case for our families in Honduras. When faced with an unexpected expense, they do not have the resources to act immediately. It takes people much more time and rely on many more resources when an emergency arrives. They do not carry credit cards, debit cards or have access to ATM’s. Often times they are caught without their identification cards and therefore are “nameless.” They may be able to “work out the situation”, but more often than not, they can’t in the moment, and will have to return at a later time through much more tribulation. I’m not sure if they experience the same frustration that I do, or if they are more accepting that “it’s just life” as they know it, and nothing comes easily.

Some how, there was a “change of heart” with our ticket agent and the fee was waived. I was grateful to save the money but also to be reminded of how fortunate I am, and aware of how many are not. I hope this feeling stays…