12 June 2002
A list of Henry’s wounds, bottom up:
· IV line in left foot.
· Blood blisters on both thighs from infection.
· Heart catheter wound to femoral artery.
· IV line sutured into groin, an evil triton looking contraption which Henry has already pulled out once.
· Stomach (feeding) tube.
· Two chest tubes, each one having been infected at some point.
· Incision from under his left armpit to the middle of his back where it looks like they used a machete to do his first, failed, BT shunt. Site of the original staph infection.
· Chest scar (second BT shunt) – a long thread from his sternum to almost his belly button.
· Stitched up left wrist for an IV they couldn’t thread. I guess this was from when they thought they were taking him back to surgery yesterday.
· And, of course, the ventilator taped to his face which isn’t technically a wound but pretty damn distressing to see anyway.
But, my child does have great hair. Thick, lush almost black. At the roots, it seems to be turning red.
14 June 2002
This is the world I live in. Ned’s been sleeping at the Parent Hotel and I am covering days. I needed to spend some more time with Gwyn and Ian. I take Ian to preschool. A Honda zips into the parking space next to me. I watch the mother jump out and grab her toddler whom she has let stand in the front seat for the car ride. I am so pissed. Decapitated by the air bag. Hurled through the front window in a 30 mph wreck. Apparently this mother has not considered the multiple ways her child could die.
We find out that Henry may be Protein C Deficient which means his blood clots too quickly (this would explain some of his surgical complications, especially the BT shunt they had to redo). I am delighted to hear that Ned has to go for a blood test because, pathetically, I want something else besides my own crappy womb and metabolism to be at fault here. I have to go, too.
Blood tests come back. Neither one of us have it.
15 June 2002
Early Saturday morning. I drag the kids out of bed to meet Ned at the Parent’s Hospital. Supposedly they are going to try extubation again. Maybe the third time will be the charm.
When I get there, Ned and I are combative, more with stony resentment than actual words. I’m livid that his two days off this coming week will be consumed with him traveling for business. He should be here for Henry, for me. His company should understand the crisis we’re in. He’s pissed I can’t remember that we still need an income and, more importantly, insurance benefits. Neither of us seem to notice Gwyn and Ian sitting in the hotel room , eating donuts and watching cartoons, waiting for their lives to resume.
Later, Henry extubated. But not doing well.
16 June – Father’s Day
Ned has had some sort of breakdown. Or maybe it’s a breakthrough. He’s been here in the PICU almost 36 hours. Slept in the recliner. Skipped out on almost all of work. If they fired him now, I think part of him would be relieved. There is something about this time, when we’re fighting for Henry to stay extubated, where Ned is panicking but is also bonding deeply with his boy. Maybe, before, Ned’s focus had been on keeping me going and Gwyn and Ian on some sort of schooling/sleeping/feeding schedule. Now that we can hold Henry, Ned sits in the rocker with him for hours.
Yesterday he collapsed. Very angry and weepy and not able to articulate what had set him off. As is he needed to justify what was breaking him. We’ve understand the cumulative effect of our enjoined lives to this point – burying my sister and then his father this past year, especially. We knew only the two of us understood each other’s sadness. We can be jackasses to one another when better, richer and healthier. But, in the trenches, I am acutely aware of how much I love him.
I’m learning how imprecise doctoring can be. Each doctor has his own prognosis and treatment suggestions. Clarke wants to reintubate this morning, Knott-Craig thinks that’s “foolishness.” He tinkers with Henry all day. Are his wife and kids pissed that he is spending Father’s Day here or are they just resigned to the fact that his professional calling supersedes time with them? Knott-Craig adjusts the bed temperature, when medicines are given and the angle of Henry’s neck under the oxygen hood. If we can get through today, he claims, “We’ll be home free.” Of course, this is no way means we are heading home. He pats my shoulder as he leaves, compliments me on our classical music choice for the day. I realize I am desperate for him as a young girl craves her father’s attention. My own father has not come to see Henry. He tells me it is too much for him to witness after losing his other child.
Some people think Henry will die, that sooner than later this mutilated heart will stop its sickly thumping. Many of the doctors have no idea which way it will go, baffled by both his complications and resilience. A few, namely Knott-Craig, believes Henry will eventually go home but that time is Henry’s best medicine. That we must have more faith in Henry than we do in medical expertise.
19 June 2002
A list of Henry’s wounds, bottom up:
· IV line in left foot.
· Blood blisters on both thighs from infection.
· Heart catheter wound to femoral artery.
· IV line sutured into groin, an evil triton looking contraption which Henry has already pulled out once.
· Stomach (feeding) tube.
· Two chest tubes, each one having been infected at some point.
· Incision from under his left armpit to the middle of his back where it looks like they used a machete to do his first, failed, BT shunt. Site of the original staph infection.
· Chest scar (second BT shunt) – a long thread from his sternum to almost his belly button.
· Stitched up left wrist for an IV they couldn’t thread. I guess this was from when they thought they were taking him back to surgery yesterday.
· And, of course, the ventilator taped to his face which isn’t technically a wound but pretty damn distressing to see anyway.
But, my child does have great hair. Thick, lush almost black. At the roots, it seems to be turning red.
14 June 2002
This is the world I live in. Ned’s been sleeping at the Parent Hotel and I am covering days. I needed to spend some more time with Gwyn and Ian. I take Ian to preschool. A Honda zips into the parking space next to me. I watch the mother jump out and grab her toddler whom she has let stand in the front seat for the car ride. I am so pissed. Decapitated by the air bag. Hurled through the front window in a 30 mph wreck. Apparently this mother has not considered the multiple ways her child could die.
We find out that Henry may be Protein C Deficient which means his blood clots too quickly (this would explain some of his surgical complications, especially the BT shunt they had to redo). I am delighted to hear that Ned has to go for a blood test because, pathetically, I want something else besides my own crappy womb and metabolism to be at fault here. I have to go, too.
Blood tests come back. Neither one of us have it.
15 June 2002
Early Saturday morning. I drag the kids out of bed to meet Ned at the Parent’s Hospital. Supposedly they are going to try extubation again. Maybe the third time will be the charm.
When I get there, Ned and I are combative, more with stony resentment than actual words. I’m livid that his two days off this coming week will be consumed with him traveling for business. He should be here for Henry, for me. His company should understand the crisis we’re in. He’s pissed I can’t remember that we still need an income and, more importantly, insurance benefits. Neither of us seem to notice Gwyn and Ian sitting in the hotel room , eating donuts and watching cartoons, waiting for their lives to resume.
Later, Henry extubated. But not doing well.
16 June – Father’s Day
Ned has had some sort of breakdown. Or maybe it’s a breakthrough. He’s been here in the PICU almost 36 hours. Slept in the recliner. Skipped out on almost all of work. If they fired him now, I think part of him would be relieved. There is something about this time, when we’re fighting for Henry to stay extubated, where Ned is panicking but is also bonding deeply with his boy. Maybe, before, Ned’s focus had been on keeping me going and Gwyn and Ian on some sort of schooling/sleeping/feeding schedule. Now that we can hold Henry, Ned sits in the rocker with him for hours.
Yesterday he collapsed. Very angry and weepy and not able to articulate what had set him off. As is he needed to justify what was breaking him. We’ve understand the cumulative effect of our enjoined lives to this point – burying my sister and then his father this past year, especially. We knew only the two of us understood each other’s sadness. We can be jackasses to one another when better, richer and healthier. But, in the trenches, I am acutely aware of how much I love him.
I’m learning how imprecise doctoring can be. Each doctor has his own prognosis and treatment suggestions. Clarke wants to reintubate this morning, Knott-Craig thinks that’s “foolishness.” He tinkers with Henry all day. Are his wife and kids pissed that he is spending Father’s Day here or are they just resigned to the fact that his professional calling supersedes time with them? Knott-Craig adjusts the bed temperature, when medicines are given and the angle of Henry’s neck under the oxygen hood. If we can get through today, he claims, “We’ll be home free.” Of course, this is no way means we are heading home. He pats my shoulder as he leaves, compliments me on our classical music choice for the day. I realize I am desperate for him as a young girl craves her father’s attention. My own father has not come to see Henry. He tells me it is too much for him to witness after losing his other child.
Some people think Henry will die, that sooner than later this mutilated heart will stop its sickly thumping. Many of the doctors have no idea which way it will go, baffled by both his complications and resilience. A few, namely Knott-Craig, believes Henry will eventually go home but that time is Henry’s best medicine. That we must have more faith in Henry than we do in medical expertise.
19 June 2002
Malley went home yesterday. And another PICU kid, Mason, is dying today. Knott-Craig says we will be going home within a couple of weeks.
Now, when I hold Henry, he looks like he might forgive me. He goes after the pacifier with a voracity that makes me scared to nurse him. I guess I need not worry about that since he will have the feeding tube for a while. I get to see his sweet round face without any tape or tubes.
The geneticist comes by today to tell us they cannot find anything on our DNA panel that would indicate our genes were the obvious cause of Henry’s heart defect. They first met with us three days after my c-section. I remember sitting in a wheelchair next to Ned answering their long series of questions. Yes, I had a mild heart murmur but we thought that was because I had scarlet fever as a young girl. Yes there was heart disease on both sides of the family but the lives that claimed were of grandparents whose lifestyles complicated their heart health. Was there Down’s Syndrome in our families, were either of us Sephardic Jews, had I taken meth when I was pregnant? My favorite question, which the genetics team asked at least three times , was if Ned and I were cousins. I am 5’11, dark and olive skinned and pretty much look like a giraffe. Ned is 5’8, pale skinned, Nordic blond and barrel chested. Hell, we’re barely the same species.
Now, when I hold Henry, he looks like he might forgive me. He goes after the pacifier with a voracity that makes me scared to nurse him. I guess I need not worry about that since he will have the feeding tube for a while. I get to see his sweet round face without any tape or tubes.
The geneticist comes by today to tell us they cannot find anything on our DNA panel that would indicate our genes were the obvious cause of Henry’s heart defect. They first met with us three days after my c-section. I remember sitting in a wheelchair next to Ned answering their long series of questions. Yes, I had a mild heart murmur but we thought that was because I had scarlet fever as a young girl. Yes there was heart disease on both sides of the family but the lives that claimed were of grandparents whose lifestyles complicated their heart health. Was there Down’s Syndrome in our families, were either of us Sephardic Jews, had I taken meth when I was pregnant? My favorite question, which the genetics team asked at least three times , was if Ned and I were cousins. I am 5’11, dark and olive skinned and pretty much look like a giraffe. Ned is 5’8, pale skinned, Nordic blond and barrel chested. Hell, we’re barely the same species.
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