Help Richard & family get to Boston Children's

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Kyle Hall and Katie Hall are organizing this fundraiser.

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Richard and family are traveling across the country from Washington State to Boston Children's Hospital for a second opinion and "last-ditch effort" to try and improve his quality of life and reduce his health risks.

Here's the full story:

Richard was born unexpectedly at 35 weeks by emergency c-section in February 2019. At the time of his birth, we learned he was born with a rare form of Esophageal Atresia (stomach not connected to esophagus/throat). About 2 hours after he was born, Kyle and Richard were in an ambulance heading to Seattle Children’s Hospital, about 40 minutes from our home without traffic.

Richard was born with Esophageal Atresia (EA), which means his esophagus was not fully developed in utero and did not connect to his stomach. He was born “unable to swallow.” At three days old, he had a g-tube placed so he could start receiving breastmilk directly into his stomach until he was big enough to repair surgically. One week later, we also found out that Richard also has Trisomy 21 (Down Syndrome).

Richard had his primary repair surgery when he was almost 5 months old, remaining in the hospital the whole time. His surgery lasted over 8 hours. His surgeon said there was not much growth of the lower end of the esophagus, so they went with Plan B which was a “gastric pull-up” which means they removed the lower part of the esophagus and pulled his stomach up into his chest and connected it directly to the upper part of this esophagus just below his throat.

He was intubated for 13 days, which is a long time for anyone, and struggled coming off oxygen. He developed fluid around his lungs, which made it hard for him to breathe on his own. He had a chest tube placed to drain the fluid and once he was no longer in critical condition, was transferred out of the ICU to the surgical floor to continue to recover. He was finally discharged on his 7 month birthday in September 2019.

Richard has spent about 1/4 of his life in and out of the hospital dealing with complications related to his feeding tube and subsequent wound care issues.

Richard was primarily fed formula through his J-tube, but he had been having significant leakage through the stoma (hole where the J-tube entered his abdomen). There was so much leakage that he was only actually getting about 50% of his daily feeds, the rest was leaking out. Which, naturally, resulted in Richard losing weight (not to mention changing the bandage around his tube every 1-2 hours and lots and lots of laundry). In February 2022, we made the decision with Richard’s primary treatment team at Seattle Children’s Hospital to admit to the hospital in order to address the leakage and come up with a solution.

After about 100 days inpatient, in May of 2022, the team at Seattle Children's ran out of surgical options to fix the leaking around his feeding tube. What that meant was we effectively gave up on using his J-tube for feeding for the foreseeable future. We believe Richard will learn to eat food orally, but that will be at least months (many) and possibly years down the road.

Richard came home with IV feeds (TPN and Lipids) through a central line. With this change, there came notable health risks and additional lifestyle restrictions for both Richard and the family.

A central line means he basically has an IV line that is placed through his chest right next to his heart. We have to make sure everything is sterile when doing anything related to his line, and that he doesn’t pull on it or we have to bring him in to the hospital. This also meant that we had some restrictions now- we needed to be able to receive weekly refrigerated deliveries of his IV nutrition, we started out with weekly in-person GI appointments at the hospital, weekly blood draws (both of which have decreased in frequency now that he is stable on his home regimen), and that we needed to stay within a maximum of 8 hour drive from Seattle Children’s and within 2 hours of a pediatric ER, in case something happens with his central line. We also need to monitor his temperature regularly and if he gets a temperature of 100.4F or higher, we have to bring him in to the hospital to make sure his central line isn’t infected which means he gets admitted.

The plan at this point is to keep his central line along with medications through his J-tube until Richard is able to sufficiently eat enough by mouth to reduce his IV nutrition and eventually no longer need it. We have no idea how many years (honestly) this will take. Richard does receive weekly therapies including feeding therapy, but while there is progress, it is very slow-going.

There is one last chance to improve Richard's daily quality of life and reduce his daily health risks, which is to go to Boston Children's Hospital. Boston is the leader in treatment across the nation for Richard's esophageal condition. The hope is that they can return Richard's feeding tube and GI system to working order so he will not be dependent on his central line for nutrition anymore.

Our philosophy with Richard is "what Richard needs, Richard gets." We want to be able to say we tried our due diligence regarding Richard's health and his care.

This is a long trip - we will be driving our 5th wheel across the country (about 3000 miles) and will take about 25 days to complete. We do have to stop each week in order to receive Richard's weekly IV nutrition supplies and medication. We are only able to move three days out of the week due to Katie's work schedule (she is able to keep working remotely while we travel) and to give everyone a break from long days driving.

We are asking for your help - This money will help cover the cost of transportation/gas and other incidental costs of the family taking Richard to Boston and staying with him locally while the Boston team completes their evaluations and come up with a plan. Due to all of Richard's hospitalizations and unforeseen costs, our budget has a very thin margin. We are technically able to fund this trip but it would put us into significant debt, so any financial help would reduce these expenses that are above and beyond the possible medical costs. Ideally, the funding will also help with our return trip as well.