A Ventricular Septal Defect (VSD) is a hole in the septum between the two large chambers of the heart that allows back flow of blood against the direction of normal flow. Due to this the body is affected in 3 major ways:
A.) the heart has to beat significantly faster to pump blood to his extremities. This uses up more calories than usual leading to higher energy demands.
B.) He has difficulty putting on weight. He was exclusively breast fed up until his diagnosis 6 weeks ago at which time we learned that breast milk alone wasn't enough to sustain him. We tried supplementing with bottle feeds but he rejected until we cut him off breast feeding cold turkey. Now Tristin pumps him breast milk and we fortify it with formula to give a specific kcal dosage at each feeding. He also has trouble feeding on account of his quick respiration. A normal suck-breath-swallow reflex for him is difficult to achieve.
3.) He takes 3 medications, 3 times a day. He's on a beta blocker to reduce the effort his heart exerts in an attempt to save calories as he's off the normal growth chart (and weighs about as much as a typical 3 month old). He's also on two different diuretics to keep his fluid retention down. Due to his blood back flow he accumulates blood in his liver and fluid on his lungs. This causes him to have a chronic cough and an enlarged liver.
After serial ultrasounds over the past 6 weeks Dr. Soni doesn't believe that the hole will close on its own and due to his inability to gain weight a surgical intervention is necessary. At our appointment last Thursday a surgery was scheduled in Vancouver with Dr. Gandhi for a week's time. Since the 80's apparently all open-heart surgeries for Western Canadian citizens have been routed to either Edmonton or Vancouver as a way of concentrating resources and having all patients see the best medical professionals.
So November 20th we're flying out and will be staying at the Easter Seals House and meeting with the surgical team Tuesday for his 4-5 hour pre-surgical workup. Involved is a series of tests to ensure that he is healthy enough to survive the surgery - if not we'll be flown back home and will have to wait for him to recover from his ailments (likely staying permanently at Children's Hospital with a feeding tube in) and return at a later date.
If he passes his pre-surgical tests we will have to wait a few days until his surgical date Thursday. The surgical details will be explained to us by the surgeon later but after it's completed he'll spend 48 hours in the Pediatric ICU before he moves over to the cardiac ward for another few days. Once he meets the criteria for discharge we will return to the Easter Seals House and wait for about a week until he clears his post surgical checkup and were cleared to fly back to Winnipeg.
Back in Winnipeg we will be learning how to take care of Jake with his new
needs over the next 4-6 weeks as his sternum heals and he gets his strength back. The prognosis for this surgery is that he'll make a full recovery, get back up to normal weight and be an entirely healthy kid without any need for medications.
Whatever donations people can make would go a great distance for us in feeling more stable in a very turbulent time.
Kevin, Tristin & Jakob
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