"Healing Hearts, Inspiring Hope for Henry James"

Update on Henry James: Henry was released by Vanderbilt Children's on May 16th as they said he was cleared to go home. The family jumped in the car filled to the brim with O2 tanks, feeding tubes, and whatever else they could fit to begin the drive from TN to Virginia. They were beyond thrilled to take Henry home. After 4 days at home, Henry's struggles worsened and into the ER they went this time in Virginia. They spent 2 weeks up and down with Henry's condition worsening and the doctors stating they just didn't have the ability to care for his specific conditions and he needed to be moved to a specialty hospital...so we began the outreach to Boston Children's Hospital. After weeks of persistent outreach from friends, family and connections, Henry was approved to be flown to Boston and admitted. Henry went to the cath lab Wednesday afternoon for what was supposed to be imaging and pressure measurements to get ready for his 3rd open heart surgery. Once in there, the doctors realized how severely compromised his pulmonary veins and heart were & decided to dilate his veins in hopes of a more successful surgical outcome. Henry was struggling to stay stable so only 3 veins were able to be dilated. While opening up his Left lower vein a clot formed and though clot-busting medication and manipulations were used to try and minimize any effects we understood the next few days would require close monitoring and lots of prayers. As I continued to ask how we were watching the clot there was nothing especially being imaged or scanned….by Friday morning we raised concern that Henry was not moving his right arm and leg as much as his left. I tried to reason with myself that the hepatic access on the right side was causing him pain and that’s why he wasn’t as mobile. At this point, Henry was still intubated to keep him calm and let his heart heal, but we requested a neuro consult to be sure the clot had not moved. By Friday night Henry was taken down for an MRI and when the results came back our hearts literally shattered. Our smiley, playful little boy had suffered a severe stroke to the left side of his brain. Even writing this and hearing the words makes me sick to my stomach. Over the past 48-72 hours we have been doing everything possible to protect his brain and minimize swelling/bleeding. Henry James has been having seizures and his code alarm has been pushed several times. For neuroprotective measures, he is currently in a medically induced coma and the extent of his injury is still unknown. We take hope in knowing that at 8 months old the brain is resilient to forming new connections and praying my sweet baby is still in there & will wake up in the next few days. Travis and I understood how major his next operation would be, but we thought we would have this week playing, holding and watching him smile while savoring each moment. We feel robbed yet again that Henry has even higher mountains to climb. His heart surgery will be postponed for a while since the risk of going on bypass is now even greater. Our tough fighter hasn’t given up and neither have we. We just hope we can try and wake him up soon and see those big beautiful eyes. I would give anything for that big gummy smile right now. Travis & I will give him every fighting chance to make it through this and we will hold that chunky little hand every step of the way. We are currently living in Boston next door to the hospital and are not planning on leaving anytime soon. Any help is so beyond appreciated. #henryjames Despite everything, Henry's courage and resilience continue to inspire and capture the hearts of all who know him, and the love for him continues to grow stronger each day.

With love and amazing gratitude,

The Family