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I have a family problem, and I'm hoping someone (or someones) have enough experience to help me. It is about family. My husband is my family. But it's not a traditional question asked on this forum.
But I could use some help because I don't know how to get someone's attention in the 21st century. (I'm used to writing letters, but that doesn't work in this case.)
Hubby had a couple of heart attacks the second to last Saturday in November. The likelihood of him surviving that first night in the hospital was 10-15%. Since then, he's been very, very, VERY slow to recover. But he is recovering, inch by inch, God fully in charge. He had to have a EKMO machine pump out his blood, oxygenate it, and then return it for ten days. (It's basically a longer-term bypass machine that had his blood go through tubes the width of a garden hose.) Since then he's had pneumonia, some infection of unknown origin that almost killed him again, open-heart surgery where they replaced his microvalve and the muscle around it with a pig's microvalve and muscle, a few fevers and until December 30th, he was on a ventilator full time. (Now he's being weaned off with the help of a trach.) During all this time he has had to lie on his back. (He gets off his back to sit for as long as he can breath now, but that's still leaning back on his back.) Also, between the ventilator and the trach, he can't talk, and I can't read lips, so he can't tell me what's wrong.
All that to tell why he's got new issues, but the new issues don't scare me a tenth as much as what has gone before. Also, I have been the one they need consent from for most of what has happened, so they did give me the usual warnings associated with many of the procedures and operations. They're not keeping me in the dark for that, but they seem to be avoiding telling me some of the lesser issues until way after the fact.
I thought he lost some teeth from the ventilator. (68, so he had some gone before this.) Ventilator so he can keep breathing or a few teeth? Easy decision. Well worth losing some teeth for, but they didn't tell me anything was wrong with his mouth until today. Yesterday, they found his gum was bleeding at the bottom of a tooth. The tooth has been dislodged and it's a big enough problem that they're probably going with surgery in the hospital to repair it. They gave the excuse that he can't even suck ice chips until dental came, and I didn't even know dental had to come until then. (They've been giving me excuses for him not being able to even suck on ice chips since December 30th, when he got on the trach.)
He has this open sore on his back side. It's "doing much better than they thought." Sound alright? I get there wasn't much they could do, but it was caused by him lying on his back (and shifted every two hours, so this isn't neglect). The skin specialist wanted me to see it today. She showed my the "skin in the middle, only to tell me it wasn't skin. It's not a scab either. It's a coating the body makes until the skin can grow back. If an average-sized woman punched you with her fist, that's the size of the coating. Add the skin growing back, and the whole "sore" is roughly the size of the area a man would use to punch you with his fist. The skin growing back over it is roughly the width and thickness of a finger. (Didn't look close enough to remember if it was a woman's finger or a man's finger.) It's "much better than it was." They're really happy it's coming along so well.
As said at the top, I'd like the doctors to tell me everything up front. Feels like they're hiding stuff from me. Added problem, in ICU they swap doctors every Monday, so John has gone through seven rotations now. I'd like them all to know this. I'd like the nurse to do the same thing. And I know it's not over, (those minor things they're keeping from me), because he's still not getting ice chips even after his tooth stopped bleeding. And, as said before, I don't know how to do this in the 21st century. In the 20th century, I write a letter, it goes in his file and they can read it any time they open his file.
How do I get this same thing in the 21st century?
But I could use some help because I don't know how to get someone's attention in the 21st century. (I'm used to writing letters, but that doesn't work in this case.)
Hubby had a couple of heart attacks the second to last Saturday in November. The likelihood of him surviving that first night in the hospital was 10-15%. Since then, he's been very, very, VERY slow to recover. But he is recovering, inch by inch, God fully in charge. He had to have a EKMO machine pump out his blood, oxygenate it, and then return it for ten days. (It's basically a longer-term bypass machine that had his blood go through tubes the width of a garden hose.) Since then he's had pneumonia, some infection of unknown origin that almost killed him again, open-heart surgery where they replaced his microvalve and the muscle around it with a pig's microvalve and muscle, a few fevers and until December 30th, he was on a ventilator full time. (Now he's being weaned off with the help of a trach.) During all this time he has had to lie on his back. (He gets off his back to sit for as long as he can breath now, but that's still leaning back on his back.) Also, between the ventilator and the trach, he can't talk, and I can't read lips, so he can't tell me what's wrong.
All that to tell why he's got new issues, but the new issues don't scare me a tenth as much as what has gone before. Also, I have been the one they need consent from for most of what has happened, so they did give me the usual warnings associated with many of the procedures and operations. They're not keeping me in the dark for that, but they seem to be avoiding telling me some of the lesser issues until way after the fact.
I thought he lost some teeth from the ventilator. (68, so he had some gone before this.) Ventilator so he can keep breathing or a few teeth? Easy decision. Well worth losing some teeth for, but they didn't tell me anything was wrong with his mouth until today. Yesterday, they found his gum was bleeding at the bottom of a tooth. The tooth has been dislodged and it's a big enough problem that they're probably going with surgery in the hospital to repair it. They gave the excuse that he can't even suck ice chips until dental came, and I didn't even know dental had to come until then. (They've been giving me excuses for him not being able to even suck on ice chips since December 30th, when he got on the trach.)
He has this open sore on his back side. It's "doing much better than they thought." Sound alright? I get there wasn't much they could do, but it was caused by him lying on his back (and shifted every two hours, so this isn't neglect). The skin specialist wanted me to see it today. She showed my the "skin in the middle, only to tell me it wasn't skin. It's not a scab either. It's a coating the body makes until the skin can grow back. If an average-sized woman punched you with her fist, that's the size of the coating. Add the skin growing back, and the whole "sore" is roughly the size of the area a man would use to punch you with his fist. The skin growing back over it is roughly the width and thickness of a finger. (Didn't look close enough to remember if it was a woman's finger or a man's finger.) It's "much better than it was." They're really happy it's coming along so well.
As said at the top, I'd like the doctors to tell me everything up front. Feels like they're hiding stuff from me. Added problem, in ICU they swap doctors every Monday, so John has gone through seven rotations now. I'd like them all to know this. I'd like the nurse to do the same thing. And I know it's not over, (those minor things they're keeping from me), because he's still not getting ice chips even after his tooth stopped bleeding. And, as said before, I don't know how to do this in the 21st century. In the 20th century, I write a letter, it goes in his file and they can read it any time they open his file.
How do I get this same thing in the 21st century?
