makes you think - page 2
Today I was out and about, running errands. I saw a family while I was out. Parents and their twins. The twins were about 8 or 9, they were in wheel chairs, with contractures, and they appeared to... Read More
Aug 17, '08Quote from prmenrsThat's how we roll. The developmental care specialist, ophthalmologist, and OT/PT begin their care and evaluations well before discharge. I think it's a great help to the parents to have some of those relationships in place before we send them out into the scary world.I think it helps if nurses know what's ahead for parents of "at risk" babies. Talk about the newborn developmental follow-up visit. Developmental observation can start before d/c and, if therapy is indicated, get that started. Have mom call her school district to start early childhood intervention programs, those can have waiting lists. Know the resources in your community.
Aug 18, '08As Ilstu99 (and many others) have said - sometimes no matter how much information the parents receive from all aspects of their child's health care team, they simply cannot understand the reality of the situation. When parents ask questions like "will they need glasses", it may seem like they have no idea what's really going on - what really should be important at the moment. However, for them, at that time, that is something that they CAN wrap their brains around. When there are so many uncertainties regarding their baby, things like that give them something more concrete to focus on.
We recently had a 25wkr who developed severe NEC at 2 weeks of life. He was one of those who when the surgeon opened him up, he should have been closed right back up and the parents told that there was nothing else that they could do. However, (for several slightly obscure reasons) he was given a fighting chance - with less than 15% of slightly healthy bowel to deal with. Obviously, his parents had numerous questions regarding his future, what his chances were, etc.... They would get frustrated with the staff for not being able to give them concrete answers. They would however continue to fuss over every little thing - like whether or not the tape (and other stuff) used to secure his ETT would leave any scars - and if they did - could we get plastics involved. Focusing on that particular problem gave them something more concrete that they could focus on. Now I'm not saying that they were right in their thinking in any of this... (this became the baby that nobody wanted to take care of d/t his parents) but just trying to give a slightly different perspective.
Sometimes, no matter how hard we work with the parents, no matter what the doctors, nurses, and specialists say or how they say it, the parents are going to think what they want to think, and hear what they want to hear.
I dealt with this on a daily basis with D's parents... they outright refused to believe that his large, muscular VSD wouldn't close on its' own - that surgery was the only option. That he really wasn't missing a chunk of his chromosomes. That by waiting to fix his heart, that his lungs wouldn't get worse and worse - and go on to develop horrible PPHN.
We can only do the best that we can.
"Some patients get to us more than others.
But you do everything that you can,
sometimes more than you thought you could,
but at the end of the day -
you have to walk away knowing that you fought a good fight" Dr. Carter, ER
Aug 18, '08I understand what you had to deal with. I do see some doctors painting a pretty picture for babies when they shouldn't. However, I do see doctors telling the exact, horrible truth and the parents will still refuse to remove life support even if the baby has NO hope of being anywhere near normal. So I've seen both sides. I am very against keeping babies alive when they are severely damaged, grade bleeds, PVL with very little brain matter, flat EEG, etc. I feel so bad when I have to do needless medical things to a poor baby who can't just die in peace.
Aug 21, '08During a family trip to Disneyland I saw a similar child at the table next to us during dinner. I was "fixated" on that child and all I could think was how many of the babies that I care for will turn out like this???
Aug 21, '08Quote from justjennyIt's entirely possible that he might have become that way long after he was born. Maybe he was in an accident or had some kind of illness that left him brain damaged? I know of several families where this happened to one of their children.During a family trip to Disneyland I saw a similar child at the table next to us during dinner. I was "fixated" on that child and all I could think was how many of the babies that I care for will turn out like this???
Aug 21, '08I think sometimes parents also associate their child's problems with being in the hospital. "Once I get the baby home where they can be in a normal situation, then everything will work out."
We tell our parents as much as we know--which sometimes isn't enough. We do have one doctor who is more "optimistic" than the rest, but other than that, I think our parents are given a pretty good idea of what could happen.
It's hard. As a nurse I can be a bit more objective r/t quality of life. As a mom, I don't know what I'd do. Some of our parents are awfully young to be having to make such hard decisions for someone they've dreamed of, planned for and deeply love.
It seems a lot of the sickest kiddos have windows where if allowed, they could have a "good" death. Once those windows are closed, some of these kids and their families can be in for a life of misery. We've sent several home without any meaningful brain function but still alive.
Like other posters, I really struggle with this. We had a 23 weeker who I don't think had a single moment where he wasn't in pain, but parents wanted everything done. He finally died after several months, but it was a bad situation. We can keep them alive, but we can't always make them live.
I wish I had the answers .
Aug 22, '08I was talking to one of our docs the other day. He started working in our follow up clinic and he was saying how he sees all the ex 24 weekers he cared for coming in with BPD, G tubes, CP, hearing aides, on and on and on, and it gives him pause. He wonders, "Did I do that? Why did I do that?" and he is little more comptemplative with his care on the unit now.
Aug 22, '08I think this is seen all over the hospital, just as another poster has pointed out in the trauma ICU, ED with adults and also in the PICU with kids.
I understand what you are saying, Julia, and my heart goes out to you because(in my opinion) you received some poor information to say the least.
But I do think that sometimes the severity of the situation just does not "hit" some of these parents even after it has been said numerous times and reinforced. I worked in the PICU last week and my 4 mo old anoxic brain injury pt was scheduled for his 2nd brain death exam. Now, the parents had been told in NO uncertain terms that there was brainstem function only and exactly what that means by an Intensivist and Neurologist and reinforced over and over by nursing and social work for 24 hours. The first thing the mother asked me when I did my assessment was if his "pupils were responding yet". And started telling the baby to open his eyes. Complete denial! Not because she hadn't been told, because she did not want to hear it.(I cannot judge because I do not know how I would react either). I cannot imagine this pain.
Of course he was determined brain dead after the second exam--- and I am always a little relieved in these situations, because the decision is then taken out of the parents hands.
Bottom line is that we do not usually know for certain what any premie will end up like...... but we need to be honest and forthcoming with all of the info, even if it is hard to hear.
Aug 25, '08I know how you feel.
Right now I have this 20 day old 23 weeker who is trying to die. He has bilat 4s and is on REDICULOUS settings. He hasn't peed in over 24 hours and has blown up like a water balloon. His whole body is translucent bc of all the fluid in his belly. The mom still thinks he is going to go home. She won't take him off...ugh. This part of my job is always the hardest. I am torturing a baby for the mothers own good. He is going to die...it's just a matter of when.