Our miracle man will be having heart surgery on Thursday, April 13th.
Weston suffers from breath holding spells. When faced with an upsetting situation or sudden pain, Weston unintentionally holds his breath, causing him to turn bluish or pale, and then pass out. Although this is quite alarming, these spells are generally not harmful. Children who experience breath holding episodes typically recover quickly with no lasting effects. Up to 5% of healthy children experience breath holding spells. They can occur as early as 6 months and may continue until a child is 6 years old. These spells are a reflex response to strong feelings. They are not a conscious choice on the part of a child or a behavior problem.
Weston began having spells around 9 months of age. They are typically infrequent, but when he is sick, teething, or overly tired he can have 3-4 episodes in a single day. Since his first spell, Weston has suffered approximately 50-70 others. The spells are terrifying to watch, but he usually returns to baseline rather quickly. After a particularly severe spell at the end of February, we took Weston to Phoenix Children’s Hospital. They assessed him, did an ECG, and drew labs. Everything appeared normal. We left reassured, but opted to schedule follow ups with neurology and cardiology. During his cardiology appointment the Dr suggested Weston wear a heart monitor for 30 days, in hopes of capturing a live reading of his heart during a breath holding spell. The cardiologist explained that rarely does the heart actually stop during an episode, but it’s a possibility that should be ruled out. He further explained that some children need treatment options, ranging from caffeine supplements to a pacemaker.
Within of week of wearing the heart monitor, Weston took a tumble and had a breath holding spell. He fainted and turned pale, but was very much himself within a minute or two. The following morning we received a call from the cardiologist. He asked whether we would describe the spell as typical, or if it was better or worse than some of the others. We described it as typical. He fainted for a few seconds and then began to cry again, but was back to playing a short time after. The cardiologist then explained that Weston’s monitor captured an 11 second pause between heartbeats, followed by another 4 second pause before a normal rhythm resumed. He said because Weston experiences these spells so frequently, and because his heart stopped beating for such a duration, he needs a pacemaker. This conversation took place on 3/31. Since then, we’ve had several pre op appointments at Phoenix Children’s, including a meeting with the surgeon who will perform the procedure. We are confident Weston is receiving the best care!
Weston’s surgery will be 2-3 hours long. Because Weston is so young, the surgeon will need to cut his sternum in order to properly place the pacemaker leads. The pacemaker generator will be placed below his ribs, above his stomach, through a second incision. After surgery we expect Weston to spend 1-2 nights in the pediatric ICU, followed by another 2-3 days in the hospital. His total recovery will be about 6 weeks, after which he can return to being a typical, wild little toddler. Weston will likely only need the pacemaker until he grows out of the breath holding spells, but nothing is certain. Given Weston’s extreme prematurity, a family history of congenital long QT syndrome (we are still waiting on his genetic test result), and his spells, we know the pacemaker is critical to his well being.
Weston is such a strong little guy, and we look forward to seeing him continue to thrive, without the worry of his heart stopping. Westy has no idea there’s anything the matter, nor does he understand he’s going to have a baby brother in a matter of days! We are blessed to have an immense amount of support from our family and friends. Please continue to hold Weston in your thoughts and prayers!
We’re home! Weston was discharged yesterday afternoon. He was an impressive little patient and everyone agreed he could continue healing at home. He slept great and this morning he was very much his usual self. He’s been dancing and running all over the house. He literally hasn’t skipped a beat! We are trying our best to prevent falls and pulling to stand until his sternum is healed in 4-6 weeks. Picking him up is challenging because we can’t put any pressure on his rib cage. He’s a hefty boy at about 28 lbs and I’m 38+ weeks pregnant, so kudos to Austin for taking on the majority of Westy’s needs while I try to take it easy.
Weston’s pacemaker is working beautifully. He’s held his breath on several occasions but hasn’t fainted! His pacemaker is set to engage whenever his heart rate drops below 80 or goes above 175 (these settings are easily adjusted as Weston grows). We are so incredibly thankful for all of the Drs and team at PCH for this lifesaving procedure!
And thank you all for your continued prayers and words of encouragement. Weston has the best fan club!
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