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.

“For It Is In Giving That We Receive”

Josue's New Laptop

We’d like to thank the anonymous donor from Pilgrim Congregational Church in Lexington, MA who recently donated a brand new laptop. This morning we delivered the gift to 17 year old “Josue”, who is currently living at The Constitution Inn located in Charlestown. For the past seven months, Josue has been receiving medical treatment (including a prosthetic hand/arm, and a “tissue expansion” in his head) at Shriners Hospitals in Boston and Springfield.

Eleven years ago, Josue’s room in Comayagua, Honduras caught on fire due to poor electrical wiring. He suffered severe burns over much of his body. Since then, he has traveled to the States several times for medical care.

Despite the adversity he has faced, Josue remains very optimistic and has a charming personality. Josue is quite fluent in English and enjoys attending school and working. We couldn’t think of a more deserving person for this generous gift, and seeing Josue’s smile and enthusiastic reaction was just priceless!

Our sincere appreciation for the kindness of others.

The challenges of life with a lymphatic malformation

 

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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.

 

Witnessing the act of “paying it forward.”

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In 1916, author Lily Hardy Hammond wrote “you don’t pay love back; you pay it forward.” In recent years, the concept of “paying it forward” has become more popular and I love hearing and watching these random acts of kindnesses spread.

This morning we arrived early to church to meet the DeSanto family. Jeanne, the mom, had been in communication with me about purchasing a gift for Ostin. This family is well regarded in our congregation for their kindness, generosity and involvement. Today’s pre-arranged meeting was a personal request on their behalf.

Five years ago, their son Peter was treated for cancer. Jeanne and Mike have vivid memories of the long days spent in the hospital, and during one surgery, a friend sat with them and handed his iPad to them and said, “keep it.” Jeanne recalls leaving ICU, landing on the oncology floor and the surgical team arriving on rounds…”rather than looking at Peter, they were staring at the iPad”. The doctors were in awe of these newly developed instruments, and it became the DeSanto’s “life line.”

There’s nothing like having the support of others who have gone through similar experiences and can truly understand and be helpful. Jeanne has shared her son’s reactions to being poked and prodded by doctors, and can empathize with Ostin and some of the behaviors he’s exhibiting. She knows he’s sensing a loss of control, and can only imagine it’s more difficult with the language barrier and cultural differences.

Today Peter, his brother Charlie and their parents presented their family “fun pack” to Ostin… a backpack filled with coloring books, crayons, games and yes, an iPad! The family was quite excited to have the opportunity to “pay it forward” to  another patient who is facing many more hospitalizations. Peter and Charlie shared their expertise and began showing Ostin how to navigate the iPad. It was pure “magic” for Ostin as he watched Bob the Builder appear on his own private screen, and gleefully yelled “construccion” (construction)!

We’re grateful to the DeSanto family and know this will provide hours of entertainment and also a great educational tool for Ostin, his family and most likely their village.

 

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 is 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 it 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 to 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.”