Medical

Esperanza – Hope For The Children’s medical work

Adapting & Thriving

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Astrid_Formal

Fourteen year old Astrid is a week away from completing her first year boarding at Fay School in Southborough, MA. It was one year ago when the opportunity to attend this prestigious school lay in peril because Astrid’s student visa was being denied. Thankfully, with great support from many, including local politicians, Astrid’s application was approved.

It absolutely amazes me how adaptable Astrid has been transitioning from living at home in Honduras to sharing a dorm room with roommates from China and Japan. She has embraced the opportunity of befriending people from many countries, and she is loved by her peers. Although most of her classmates come from very wealthy families, Astrid remains very proud of her family and their modest means.

Astrid is not only ambitious about her education, she is very philosophical about her future. Recently she explained the career choices she aspired to not only determined by her interests but for the ability to positively impact her family. Sincerely she stated, “we can’t be dependent on others “to survive in the impoverished country, we have to want to work our way out.

Not only has Astrid thrived in her new academic environment and acclimated back and forth between the first and third worlds, she has courageously faced her medical needs. In March Astrid had extensive reconstructive surgery on her left foot and was in a cast for 12 weeks. Learning to navigate campus and having to rely on others for help was a challenge for her.

Astrid is truly one of the most inspiring people I have ever met. As William Shakespeare stated, “though she be but little, she is fierce.”

From A Statistic To Member Of Our Household

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Ostin Pudding

He’s no longer a number…he’s more than a name…he started as a patient…and now he’s one of “our” kids. The statistics are staggering, more than 80% of Hondurans do not have health insurance. Three years and five months ago we first heard the name “Ostin” and learned he was in need of medical attention. At first we helped from a distance…communicating with doctors in San Pedro Sula and sending money to cover the visits and transportation. Next, we were able to meet him and his family in person. We contacted doctors at prestigious hospitals in Boston, listened to their advise about protocol for treatment and forwarded that information on to the doctors in Honduras.

We continued to visit Ostin, reassuring his parents we were still committed to helping. Many months would pass, and eventually we helped obtain a drug from Japan which the doctors in Honduras were able to inject into Ostin. We returned to Honduras and accompanied Ostin and his mother to medical appointments. Initially, the drug seemed to work and Ostin was showing improvement. Months would pass, more injections would be given, and then we would return for another visit. At last, the doctors felt they had done all they could do for Ostin and he would need to go to the States for more treatment.

Many more months passed as we coordinated doctors, hospitals, financing, and visas. Ostin arrived here 10 weeks ago and since then has undergone two big surgeries and other procedures. Once a child moves into your home, he/she is no longer a patient…he/she becomes one of your own. We know his fears, what makes him happy, his favorite foods, the toys he likes to play with. Sometimes it’s a slow process, other times it’s more immediate, but they crawl into your heart.

Having a child living with a serious medical condition is extremely stressful. We try focusing on one medical appointment or procedure to the next, but then there are unpredictable setbacks in his health or unforeseen issues with financing and the feelings of frustration and disappointment escalate.

Loving a child who has no health insurance and has one opportunity to receive medical treatment before returning to his life in poverty adds a whole new dimension…especially when you feel like you’re his voice.

From Toddlers To Teens, Inspired By Others With Lymphatic Malformations

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Last month we returned to Lenox Hill Hospital for Ostin’s second surgery. We had the pleasure of meeting little Nora, who instantly charmed us with her out going personality, adorable smile and abundance of love (blowing kisses to all)! Nora, her mom, Carrie, and grandma joined us in the playroom where we had an opportunity to share “our stories.” Nora is a 16 month old girl who was born with a lymphatic malformation, similar to Ostin’s. It is incredibly comforting to be with children and their families who can relate to your situation, discuss different treatment plans and explain where they are on their journey. Carrie really inspired us with her strong faith, extensive knowledge of this medical condition and great sense of humor! As Carrie describes on her blog,littlelightofminenora.blogspot.com, Nora’s name means “light” and she truly is the light in their loving family.

The month before, we had been sitting in the same playroom, when we had the good fortune of meeting a 16 year old girl, and her father. Her dad inquired about Ostin, wondering what type of diagnosis he had. We knew it was a “safe” environment and he was truly asking out of concern. When I responded, “he has a lymphatic malformation”, he turned to his beautiful daughter, and said, “so does she.” This articulate and poised young lady proceeded to share her experiences in a very factual, easy going manner. She had been born in Mexico and at the time of her birth, her father knew that something was “wrong.” Unfortunately, the doctors denied his insight and no treatment was offered. When she was two years old, the family traveled to the United States where medical care was available, and they settled into their new environment. It’s been a financial struggle for this family of five…the father works two jobs and can only afford health insurance for his children, not for his wife or himself. Yet, he never complained. Receiving medical care for his daughter was his priority, and he knew he was more fortunate than others.

We were grateful they are fluent in Spanish, and left Ostin’s mom, Karla, with them so they could have the opportunity to talk. They learned Karla and Ostin are from Honduras, and living with us while Ostin receives medical treatment. The father told me that Karla has the desire to learn English, and then quietly handed me $50.00, saying, “could you put this towards that?” At first I resisted, but looking in his eyes, I knew this was a gift from his heart.

True example of generosity…the person with the least, offering the most.

This Semana Santa We’re Celebrating Another Miracle

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Karla with the doctors

Semana Santa (Holy Week) is a hugely celebrated time in Honduras. Most businesses are closed, transportation is limited and people spend days cooking special foods. Many people head to the water…the beach, the river or a local pool. Just after midnight on Holy Thursday, people gather on the streets of Comayagua with their brightly colored sawdust and cardboard stencils to create the beautiful alfombas (carpets) depicting religious scenes. Just nine hours later, there will be a holy march over the alfombras, marking the stations of the cross in remembrance of Good Friday. On Pascua (Easter), people will celebrate the miracle of Jesus’ resurrection.

This week we will celebrate many of these traditions at our own church. However, our thoughts will also be on the “miracle” of Ostin’s medical treatment and the team providing his care. Under the leadership of, Dr. Milton Waner, “ an internationally recognized pioneer in the development of successful treatments for hemangiomas and vascular anomalies”, he is joined by Dr. Aaron Fay, “a pioneer in the field of orbital surgery and vascular malformations” and Dr. O, “a head and neck surgeon specializing in the surgical treatment of hemangiomas and vascular malformations.” We couldn’t be more fortunate in having been introduced to such a specialized and experienced group which provides world-class care. Please visit http://www.vbiny.org to learn more about The Vascular Birthmark Institute.

Today marks the seventh week since Ostin and Karla arrived to the United States. It has been an amazing experience to watch the physical transformation of Ostin’s face. He arrived with the left side of his face distorted…his eye pushed out of its socket, his cheek and chin line far greater than the right side of his face. After two surgeries and one steroid injection, his eye has been re-positioned into the socket, and the swelling in the cheek has been substantially diminished. This week Ostin’s stitches will be removed and he will receive another steroid injection in the eye. In three weeks, the doctors will address the corner of his mouth and under his jaw which they hope to treat with sclerosing injections.

May you all discover and celebrate your own “miracle” this week.

Back in NYC for Ostin’s Second Operation

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Yesterday, we arrived at The Ronald McDonald House at 9:30 a.m. to pick up Ostin and Karla. Everyone was familiar with the pre-op routine…no food or drink, and keep Ostin as distracted as possible so he wouldn’t obsess about it. He was admitted to Lenox Hill Hospital and we were sent to the pediatric floor where he was assigned a room and given the freedom to play. Later, the crew from Inside Edition arrived to take some pictures and videos. Ostin was shy at first but then took command of the situation…he hid behind his iPad and filmed all the crew, while greeting each one with “hola!” He thoroughly entertained all of us.

We headed to the pre-op room for consents, questionnaires, and monitoring. The whole process went much more smoothly than last time. Once again, Karla walked Ostin into the O.R., and returned in tears…this is the hardest moment for her. She called her husband in Honduras and was able to update him about the operation. He would then share the news with his family and then their church, where they have been lighting candles and constantly praying.

The operation took about 5 1/2 hours, and the doctors explained it was called “a face lift incision” (a surgical line starting from above his ear to bellow his chin). They were able to successfully remove the lymphatic debris. Preserving the facial nerve was especially difficult due to the lymphatic matter being “cemented” around the nerve. Both surgeons were pleased with the results and explained he will return home with a drainage tube (which will remain for up to 4 weeks), his stitches will be removed in 10 days and he will have another procedure in 4 weeks. Ostin and Karla were settled in for the night.

This morning when we arrived Ostin was in a significant amount of pain but just as defiant in taking any medication. He had already ripped out his IV so they were no longer able to administer it that way. One brilliant nurse injected his medicine into a juice box, and with tremendous amounts of coaxing (and bribing), we were able to get the medicine in. This operation was more extensive, covering a larger area and we expect the recuperation to take longer.

Thank you all for your continued support.

The challenges of life with a lymphatic malformation

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Ostin-Rick

It’s been almost a month since Ostin received his first surgery at Lenox Hospital, in New York City. The surgery and recovery went well, and Ostin was thrilled when the drainage tube was removed and the medications were finished. He was freer to play and became more relaxed and engaging with us, and met new friends, as well.

This past weekend, his eye became more swollen and bruised. Reluctantly, I texted a picture to one of his physicians, not wanting to bother him on a Sunday but concerned he might need immediate attention. The doctor wondered if he had a hemorrhage, and said if the pain was tolerable, he could wait for his scheduled appointment on Tuesday.

As it turned out, it was not a hemorrhage, rather it was lymphatic fluid which had built up. Early this morning, Ostin underwent anesthesia and then the doctor was able to remove 5 cc’s of fluid, and give him steroid injections to the upper and lower eyelids.

Once again, Ostin showed his spirited self…protesting the abstinence of food/liquid before the procedure, and making it known that he wanted to leave the hospital ASAP. He thought he could hasten the process by removing his hospital ID and the IV himself.

Ostin is happy to be back home, snuggled in his bed. The nurse had suggested giving him tylenol but we have learned, he would rather deal with the pain than swallow any medicine. Hopefully, Ostin will continue to make strides in the treatment of his lymphatic malformation. His next surgery is scheduled for March 25th.

 

One little boy…one BIG hope for medical care.

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Ostin

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.

Easter Blessings

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Recently, we returned from 18 days in Honduras. During our stay, we were introduced to new patients including a young woman, “Katherine”, who visited us with her foster mother. She had moved from her home because her mother suffers from severe mental illness and it was an unhealthy environment. Katherine’s symptoms included severe headaches, blurred vision and a deep fear “she was going crazy.” Tom took a medical history, did an eye exam and spoke with a neurologist we had recently met in Comayagua. He arranged for an appointment the next day, and also found a trustworthy place to perform a CT scan.

Thankfully, the neurologist agreed with Tom’s initial assessment, Katherine was suffering from migranes, and although they can be incapacitating, it wasn’t what she truly feared, or anything life threatening. The day after Katherine’s medical exams were completed, we received the letter below which was kindly translated by Esperanza supporter, Ursula Millard.

Dear Doctor and his Wife,

I am very grateful for what you have done for me. I cannot pay for it, but I know that God will bless you wherever you go because you do something very special. Thank you, thank you, and thank you very much. I know that God brought you to my life, and you have been such a blessing. I wish you the best always. I will always remember you. You are people with a great heart and I know that God will always be with you and will make you stronger. With the blood of Christ bless you always. Thank you. I appreciate it with all my heart. I love you very much.

If God is with you nothing can harm you.

Do not be afraid nor give up because The Lord is with you.

I love you a lot. I love you a lot.

Katherine Ramos

As we celebrate Easter today, we are reminded of the many blessings in our lives. Receiving Katherine’s letter was quite humbling and once again we realize the gifts we receive from others far outweighs the efforts we make.

The Harsh Reality in the Lack of Medical Resources

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Denis Javier Acosta Gallardo

This past week I was hit with a nasty viral bug. It came on suddenly and wiped me out quickly. I chugged a variety of medications, slept as much as I could and anxiously awaited relief. But while I waited, I thought of people in Honduras who are faced with similar common illnesses and those who suffer from far greater ones. How much harder they endure and with far less complaining than me!

After years of working in the medical field of Honduras, we’ve been accustomed to a shortage of supplies in medicine and equipment, but things have become worse. Last fall we learned about hospitals having to cancel surgeries because they lacked oxygen. Now, there are 28 public hospitals having to postpone surgeries because they lack basic operating materials.

It’s alarming to hear this news which tremendously impacts the general population, putting the majority of Hondurans at risk. We also witnessed this personally, in our village of Flores, with a neighbor suffering from Guillean-Barre Syndrome. This illness struck the nervous system of a healthy 18 year old, and now poses life-threatening complications.

This situation would be terrifying enough for any family but imagine facing the monumental task of coming up with $15.00 a day for the medication when that exceeds your daily income? And then…facing the obstacle of actually finding a place that has the medication available? That’s just the beginning…the mom couldn’t have been more appreciative of the basic supplies (gloves, gauze, oxygen tubing) which we could provide. These items were not available in town and she didn’t have the resources to look elsewhere.

We’ll continue to collect as many resources as we can, and deliver them in March. Hopefully, there will be additional aid on a National level, as well.

Packing For Honduras

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Honduran Hospital

In less than a week, we will be on our way to Honduras. For the past several months we have been collecting school supplies, footwear and medical supplies. I have certainly learned the “art of packing” and remove any excess packing materials, pack in lightweight canvas bags and fill each one to exactly 50 lbs. (our heavy stuff goes in the carry-ons!) We are allowed one checked bag for free but pay the additional fee ($50.00 each) to bring 2 extras…far cheaper than sending by mail, and generally, reliable.

Part of the packing process is assessing which items are the greatest priority. Certainly medical supplies comes to the top of the list and we will be carrying medicine and equipment. However, one item we are unable to take and is greatly needed is oxygen. I just read a report that Mario Catarino Rivas, a large public hospital in San Pedro Sula is currently without oxygen. Not only elective surgeries, but emergency surgeries are cancelled. The issue is a supply problem… the hospital is in debt to its only supplier. This just adds another element to the long list of problems with the healthcare system… chronic shortage of medicine, equipment and supplies, along with striking doctors.

Hopefully, we’ll stay healthy during our trip and fortunately, we have the means to receive private care. We’re certainly in the minority  for this privilege.