We have entered a bold new world in our family. Elli has progressed in her development (a good thing). Instead of being at the physical level of a 3-6 month-old, she is now more like a 1-year-old... but in a 7-year-old's body (a very bad thing).
In this new stage, Elli grabs everything that comes within reach, and we vastly underestimate the scope of her reach. I remember this now. But with a 1-year-old, you aren't dealing with the height and strength that Elli has. Up til recently, it was more of a nuisance. She gets her hands on food bowls at the table, pulls the tablecloth, grabs at toys left on the floor, and insists on practicing rolling even though she still can only roll one way and gets mad when she gets stuck.
Last week we decided that we have to strap her arms to her wheelchair while we tube-feed her so she won't pull the tube right out of her body. She refuses to obey us when we tell her not to even touch the tubing. So until she can learn some self-control (who knows how long that will be), we have to protect her by immobilizing her arms.
But even pulling her feeding tube out is relatively minor. This weekend she showed us just how much trouble she is now capable of getting into. Thursday night we had to rearrange sleeping quarters and put Elli on an air mattress on the floor. We didn't realize how much she wiggles and how far she can get, even with these leg splints she wears at night. Elli managed to tip over a night table, pull the lamp on it to her, and get her hand stuck inside it. It was a touch lamp, so she was able to turn it on and couldn't turn it off because her hand was stuck. She burned to blisters the entire inside of her pinky on the hot bulb.
What none of us can understand is why she never cried. Not when she burned it. And not after, which hurts worse and for longer than the actual burn does. We didn't realize the finger was burned until the next morning! (These are the things that haunt a mother.)
The next day, she wiggled across another floor to grab the power cord to a decorative lamp. She pulled the lamp down, breaking part of it, and somehow wrapped the cord around her neck.
We are praising God that we caught both incidents before tragedy struck. And we are praying very hard for wisdom and discernment to foresee and avert any other major problems until she gets through this stage. It's a somewhat frightening time for us, and will be very draining as we can no longer leave her unattended safely. I'm praying that she doesn't take longer than a normal 1-year-old to learn all these cause-and-effect and obedience lessons.
Showing posts with label Elli's diagnosis. Show all posts
Showing posts with label Elli's diagnosis. Show all posts
Nov 26, 2007
Mar 21, 2007
When Does Life End?
I’m presenting at a bioethics forum at our children’s hospital this month. It’s an amazing opportunity because it’s very official – attendees earn continuing education credit from this class! Our topic is whether there should be limits to parental decision-making, particularly when a hospital promotes family-centered care. My segment of the forum addresses how to include families in difficult decisions, not on end-of-life issues themselves. But it has gotten me thinking about ethics in health care. Then I read this article on Google New’s headlines this week: Organ Donation Trend Brings Worries
To sum up, the article states that many hospitals have begun a new procedure for harvesting donated organs, called “Donation after cardiac death” or DCD.
I have learned that our hospital has done a few DCD procedures and is currently finalizing a policy on it (this became a requirement on January 1, 2007).
I had never seriously considered these issues before my daughter was born 7 years ago. The first time anyone suggested that we might need to consider it occurred when Elli was 4 days old. She had been admitted to the hospital’s newborn intensive care unit the night before, with the intention of moving her to the cardiac ICU as soon as a room opened up.
We had been encouraged to go home to try to sleep since we were in for a long haul. I called the nurse for an update around 8am the next morning. She told me that Elli was fine but that the doctors wanted to meet with us when we arrived. I called our pastor to update him, and we gathered our things to spend the day down there.
When we walked into the ICU, we were told that we couldn’t go into our child’s area just yet. My milk had come flooding in the day before, so I was extremely uncomfortable. I told them I needed to find a pumping room, so we headed down the hall away from our daughter’s pod. Both rooms were busy. As we were walking back, we ran into two people who were obviously looking for us. The man introduced himself as Dr. S___ and the woman as a hospital chaplain.
We had minimal experience with hospitals at that point, but we had watched “Trauma: Life in the E.R.” enough times to know that when they bring in the chaplain, the situation is bad. Yet, somehow my brain refused to consider what this could mean.
In a private meeting room, we heard words I’ll never forget.
“Mr. And Mrs. B___, this morning your daughter’s heart stopped beating for 30 minutes. We tried everything we could, and finally got it beating again with a calcium injection. We did chest compressions throughout the process, but because her heart valve is in such poor condition, we have no idea if we successfully circulated blood to her brain. I wish I could say, ‘But the good news is…’ but I can’t. Even if she makes it through this, her body has suffered such a significant trauma that it will not be ready to undergo the surgery she needs for a few weeks.”
It was like being flattened by a 4x8 foot section of plywood.
I asked if we could see our baby, and he said that would be fine. But Scott wasn’t sure he wanted to go. We both understood in an indirect way that what we’d been really told was that our baby was probably going to die that day. Scott didn’t want his last memory of her to be of her struggling for life with tubes and wires everywhere.
So this gave us an idea of how difficult these situations can be for families. Different people approach the same situation differently. I could understand Scott’s feelings, but I had my own. I didn’t want her to die surrounded by strangers in the sterile hospital room. I believed that as her mother, I needed to be with her til the end. But I didn’t want to leave Scott alone either. I was torn in two.
Then our pastor arrived. I swear at that moment I thought God had sent us an angel. How else could this man have known that we would need someone with us that morning who wasn’t as emotionally-involved or physically run down
Anyway, Russ offered to go with the doctors to check on our baby before we went back. This way he could prepare us for what we would see.
I learned later that Russ also took that chance to ask the doctor out of our ear-shot what they honestly expected. The doctor acknowledged that they didn’t expect Elli to survive the day.
When Russ returned, he told us what we would see. Elli had a tube in her mouth going into her lungs, connected to a machine called a ventilator that was breathing for her. She had more IV lines going into her navel (they were able to use the umbilical veins present at birth, which is unusual in a 3-day old baby – they are usually unusable by then) with many more medicines dripping into her little body. She still had the eye shields on because they were still treating her with ultraviolet light for the jaundice she had developed. She was basically on full life support.
He also asked us to call him right away if anyone suggested that we meet with the ethics team about her. I was able to really hear what he was saying and understood that we might have to make some very difficult decisions about when to stop medical intervention. I think that he may have even said, “Just because we have the technology to do something doesn’t mean we should necessarily use it.”
That moment was the first I realized that death isn’t always clear – a flat line on a monitor or a sudden unmistakable end. Sometimes the line is blurry, sometimes it takes an agonizingly long time, and sometimes families have to make gut-wrenching decisions about when to withdraw life support. Families are often asked to decide when to extend life and whether, just because the technology is available, they should really use it.
Our road didn’t continue deeper into the valley of the shadow. The hours crept by but no-one came with more bad news. They transferred Elli into the cardiac ICU, where we began a daily vigil at her bedside. We learned more about the people, medicines, and machines used up there. And ever so slowly, minute by minute, Elli began to improve. She eventually became strong enough for an initial open-heart surgery.
So we have not had to make the decision to stop life-support, yet. And I’m not sure how we approach the donation after cardiac death issue, if confronted with it. On the one hand, in cases of irreversible and devastating brain injury, prolonging life seems cruel and unnecessary.
On the other hand, I’m concerned that this could start a move towards euthanasia or mercy-killing based on someone’s subjective idea of what is a life worth living. I am also concerned that individuals who are unable to communicate, but who can still think, will be falsely assumed to be vegetative.
Ten years ago, Elli would be assumed severely mentally retarded because she cannot speak. Now we know that she has a lot going on in her head and once we teach her and the technology catches up to her, she’ll be able to demonstrate this in undeniable ways.
To sum up, the article states that many hospitals have begun a new procedure for harvesting donated organs, called “Donation after cardiac death” or DCD.
“Under the procedure, surgeons are removing organs within minutes after the heart stops beating and doctors declare a patient dead. Since the 1970s, most organs have been removed only after doctors declared a patient brain dead.”Supporters claim that this is only done on patients suffering devastating brain injuries, such as from a car accident or or stroke. They also claim to operate within very strict guidelines, including that families make the decision to withdraw life-support independent of their decision to donate organs. This supposedly avoids the image of someone persuading a family to withdraw life-support specifically for the purpose of harvesting the patient’s organs.
I have learned that our hospital has done a few DCD procedures and is currently finalizing a policy on it (this became a requirement on January 1, 2007).
I had never seriously considered these issues before my daughter was born 7 years ago. The first time anyone suggested that we might need to consider it occurred when Elli was 4 days old. She had been admitted to the hospital’s newborn intensive care unit the night before, with the intention of moving her to the cardiac ICU as soon as a room opened up.
We had been encouraged to go home to try to sleep since we were in for a long haul. I called the nurse for an update around 8am the next morning. She told me that Elli was fine but that the doctors wanted to meet with us when we arrived. I called our pastor to update him, and we gathered our things to spend the day down there.
When we walked into the ICU, we were told that we couldn’t go into our child’s area just yet. My milk had come flooding in the day before, so I was extremely uncomfortable. I told them I needed to find a pumping room, so we headed down the hall away from our daughter’s pod. Both rooms were busy. As we were walking back, we ran into two people who were obviously looking for us. The man introduced himself as Dr. S___ and the woman as a hospital chaplain.
We had minimal experience with hospitals at that point, but we had watched “Trauma: Life in the E.R.” enough times to know that when they bring in the chaplain, the situation is bad. Yet, somehow my brain refused to consider what this could mean.
In a private meeting room, we heard words I’ll never forget.
“Mr. And Mrs. B___, this morning your daughter’s heart stopped beating for 30 minutes. We tried everything we could, and finally got it beating again with a calcium injection. We did chest compressions throughout the process, but because her heart valve is in such poor condition, we have no idea if we successfully circulated blood to her brain. I wish I could say, ‘But the good news is…’ but I can’t. Even if she makes it through this, her body has suffered such a significant trauma that it will not be ready to undergo the surgery she needs for a few weeks.”
It was like being flattened by a 4x8 foot section of plywood.
I asked if we could see our baby, and he said that would be fine. But Scott wasn’t sure he wanted to go. We both understood in an indirect way that what we’d been really told was that our baby was probably going to die that day. Scott didn’t want his last memory of her to be of her struggling for life with tubes and wires everywhere.
So this gave us an idea of how difficult these situations can be for families. Different people approach the same situation differently. I could understand Scott’s feelings, but I had my own. I didn’t want her to die surrounded by strangers in the sterile hospital room. I believed that as her mother, I needed to be with her til the end. But I didn’t want to leave Scott alone either. I was torn in two.
Then our pastor arrived. I swear at that moment I thought God had sent us an angel. How else could this man have known that we would need someone with us that morning who wasn’t as emotionally-involved or physically run down
Anyway, Russ offered to go with the doctors to check on our baby before we went back. This way he could prepare us for what we would see.
I learned later that Russ also took that chance to ask the doctor out of our ear-shot what they honestly expected. The doctor acknowledged that they didn’t expect Elli to survive the day.
When Russ returned, he told us what we would see. Elli had a tube in her mouth going into her lungs, connected to a machine called a ventilator that was breathing for her. She had more IV lines going into her navel (they were able to use the umbilical veins present at birth, which is unusual in a 3-day old baby – they are usually unusable by then) with many more medicines dripping into her little body. She still had the eye shields on because they were still treating her with ultraviolet light for the jaundice she had developed. She was basically on full life support.
He also asked us to call him right away if anyone suggested that we meet with the ethics team about her. I was able to really hear what he was saying and understood that we might have to make some very difficult decisions about when to stop medical intervention. I think that he may have even said, “Just because we have the technology to do something doesn’t mean we should necessarily use it.”
That moment was the first I realized that death isn’t always clear – a flat line on a monitor or a sudden unmistakable end. Sometimes the line is blurry, sometimes it takes an agonizingly long time, and sometimes families have to make gut-wrenching decisions about when to withdraw life support. Families are often asked to decide when to extend life and whether, just because the technology is available, they should really use it.
Our road didn’t continue deeper into the valley of the shadow. The hours crept by but no-one came with more bad news. They transferred Elli into the cardiac ICU, where we began a daily vigil at her bedside. We learned more about the people, medicines, and machines used up there. And ever so slowly, minute by minute, Elli began to improve. She eventually became strong enough for an initial open-heart surgery.
So we have not had to make the decision to stop life-support, yet. And I’m not sure how we approach the donation after cardiac death issue, if confronted with it. On the one hand, in cases of irreversible and devastating brain injury, prolonging life seems cruel and unnecessary.
On the other hand, I’m concerned that this could start a move towards euthanasia or mercy-killing based on someone’s subjective idea of what is a life worth living. I am also concerned that individuals who are unable to communicate, but who can still think, will be falsely assumed to be vegetative.
Ten years ago, Elli would be assumed severely mentally retarded because she cannot speak. Now we know that she has a lot going on in her head and once we teach her and the technology catches up to her, she’ll be able to demonstrate this in undeniable ways.
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