The latest with my cousin's baby Joe, who was born with Hypo Plastic Left Heart Syndrome six weeks ago:
The jaw distraction procedure didn't help Joe breathe on his own, so after five unsuccessful extubation attempts, doctors performed a tracheostomy. He could have it in up to two years. I didn't realize all the dangers it poses. It does allow him to breathe, and he's off the vent. But the risk of infection is very great. His parents have to learn a long list of safety procedures and steps to keep his environment as sterile as possible. They will have to give up their family pets. Joe won't be held, or maybe even visited, by very many people because the risk of infection and illness won't allow the contact. The average infant could probably handle infections or the sniffles, but Joe's heart is so delicate and in such a precarious situation that an infection could prove fatal.
My cousin Kerry is overwhelmed. There's no other way to say it. She's also frustrated because she'd hoped to have him home by now. Also, in an e-mail the other day, she talked more about the repercussions of the trach and why it was a last resort she had hoped would not be necessary. Joe won't be able to suck from breast or bottle. He won't be able to eat through his mouth at all. Instead, he will be fed through a tube in his stomach, which cannot be inserted until his open-heart-surgery chest wound heals completely. That means he's probably not getting as many calories as they'd like him to get (through IV feedings, etc.). They'd like to see him getting bigger and stronger so he's better able to battle whatever comes his way. I think he's doing OK, though, because Kerry says his newborn knit hat is now too small for his big beautiful head. That's nice news. The positive stuff...we take it wherever we can get it!
They also won't be able to hear him cry, babble, or make any noises. The trach may silence his vocal abilities, but it certainly won't affect his need for love and snuggles from his mommy and daddy, and continued well-wishes and prayers from everyone else.
We're visiting them in June. I sure hope Joe's home by then. For everyone's sake. Even if we can't see him in person, I'm anxious to give Jason and Kerry hugs of support and spend time with Joe's big brother, Jack...who may be getting the worst end of all this. He's old enough to understand what's going on but not necessarily old enough to be at peace with the fact that his world's upside down and he misses mommy's undivided attention. Perhaps that's the beginning of sibling rivalry for any newly designated big brother.
There may have been complications and setbacks, but we look at the brigher side. Joe's still with us. His fragile, special heart is beating. And he's touching everyone else's.
The jaw distraction procedure didn't help Joe breathe on his own, so after five unsuccessful extubation attempts, doctors performed a tracheostomy. He could have it in up to two years. I didn't realize all the dangers it poses. It does allow him to breathe, and he's off the vent. But the risk of infection is very great. His parents have to learn a long list of safety procedures and steps to keep his environment as sterile as possible. They will have to give up their family pets. Joe won't be held, or maybe even visited, by very many people because the risk of infection and illness won't allow the contact. The average infant could probably handle infections or the sniffles, but Joe's heart is so delicate and in such a precarious situation that an infection could prove fatal.
My cousin Kerry is overwhelmed. There's no other way to say it. She's also frustrated because she'd hoped to have him home by now. Also, in an e-mail the other day, she talked more about the repercussions of the trach and why it was a last resort she had hoped would not be necessary. Joe won't be able to suck from breast or bottle. He won't be able to eat through his mouth at all. Instead, he will be fed through a tube in his stomach, which cannot be inserted until his open-heart-surgery chest wound heals completely. That means he's probably not getting as many calories as they'd like him to get (through IV feedings, etc.). They'd like to see him getting bigger and stronger so he's better able to battle whatever comes his way. I think he's doing OK, though, because Kerry says his newborn knit hat is now too small for his big beautiful head. That's nice news. The positive stuff...we take it wherever we can get it!
They also won't be able to hear him cry, babble, or make any noises. The trach may silence his vocal abilities, but it certainly won't affect his need for love and snuggles from his mommy and daddy, and continued well-wishes and prayers from everyone else.
We're visiting them in June. I sure hope Joe's home by then. For everyone's sake. Even if we can't see him in person, I'm anxious to give Jason and Kerry hugs of support and spend time with Joe's big brother, Jack...who may be getting the worst end of all this. He's old enough to understand what's going on but not necessarily old enough to be at peace with the fact that his world's upside down and he misses mommy's undivided attention. Perhaps that's the beginning of sibling rivalry for any newly designated big brother.
There may have been complications and setbacks, but we look at the brigher side. Joe's still with us. His fragile, special heart is beating. And he's touching everyone else's.
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