lymphatic malformation

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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IMG_5395

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.

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.