In our unit (level III NICU) because we have surgeons, we seem to see a lot of shor gut babies. Transported in from other hospitals. The one's born here usually get diagnosed in time to save most of their intestines.
What level NICU are you in? How many gut babies do you see, and how many are shortgut. How do you all treat them, and what do you tell the parents about them? Do your docs recommend removing ETT's, and support, or do you support all of them to the point where they end up getting liver failure from the TPN? Do your docs tell them that they can eventually become transplant candidates?
I know these are a lot of questions, but I am having ethical dilemmas about not making them DNR's when we know that they will be tortured until they eventually die anyway.
Our speech department also uses them. Dum-dums, to be exact. Usually cherry, because the kids seem to like it's simple sweetness the best. They use it on the trached BPD babies who were intubated so long that they were orally averted by the time they got trached, recovered, and were able to bottle feed for the first time. These kids aren't NPO (usually have G tubes, sometimes still just an NG) and usually are 44+ weeks gestation by that point. The suckers actually do help, especially when we are getting them ready for spoon-feeding cereal and baby food.
We've also had short gut babies who were NPO well after their surgeries, not because they still had active NEC, but because they lost so much bowel that when we do give them food (even breastmilk or Neocate), they just dump it right out the other end. These babies are just in such pain that we end up stopping feeds completely. Those kids are offered suckers, though. I mean, really, how much "food" is actually in a few licks of a Dum-Dum? We've even done it on babies who still have NG to suction if they're way post term, because really not much is even consumed or absorbed. These are all usually kids who we are getting stable to go home on TPN with Broviacs, awaiting bowel-liver transplants. Our Peds GI specialist recommends the suckers because he's seen a lot of kids finally get the transplants only to refuse to take food orally because they've never experienced it before.
Now, MY real issue with these very short-gut babies is this...
We've stabilized SO many of them after sugery, sent so many of them home on TPN, heard about so many of them getting on the transplant lists...
And not a SINGLE one of them survived long enough for it to actually get it.
I understand about wanting to send a baby home to be with its family. We sent one baby home on hospice as soon as she stabilized post-op, maybe a week later. She had NOTHING left. They fed her Pedialyte by bottle and gave her sublingual morphine for the two or three weeks she lived. THAT kind of thing I support.
But the others...who go home on full TPN...seriously. Most of them are back in Peds or PICU on a weekly basis, getting blood and platelet transfusions. Other times it's problems with their Broviacs, often requiring return trips to the OR for new lines. All of them are in pain. Liver failure is a horrible way to die. If I saw just ONE baby actually get a transplant and survive, I might be more optimistic. But if it was MY baby...no way. It's a pipe dream.
Sorry so long-winded. I've been the primary nurse for way to many babies that had NEC, I guess.
I appreciate the long windedness. You state my feelings exactly. If I, also, saw just one live long enough to recieve the transplant, I might feel differently. But all of the one's I have ever seen in my 14 years of nursing in NICU, have died horrible, long deaths. Never able to stay out of the hospital, and ending up getting pneumonia, or some other infection. I feel like we do these parents an injustice by not telling them exactly how long and hard their baby's life is going to end up being. I feel that if they knew, they would allow us to let them go when they are so sick that it would be a relief to their small bodies.
We do have surgeons that are trying the lengthening. But, until I see some outcomes, I'll reserve judgement.
I'm very interested in hearing about this lengthening procedure. Anyone?
I don't know much about it. Our surgeons are putting it out as a hope for our parents. I think it relates to the pull through method for Hirschprungs. We do a lot of those, and they work. If the lengthening works half as well, I can't wait till we see it as a real option.
And HERE is a one-hour video of the surgeons at this hospital actually PERFORMING the operation, with a running commentary and a doctor answering questions the whole time. I didn't watch it all yet, but very cool! Go to the website below and click on "view live webcast"...
The STEP procedure described by the above hospital is a new procedure created in Boston. There are more hospitals starting to do it as well, but I found that there is an older surgery, first performed in the 80's, called the Bianchi bowel lengthening procedure. In this one, it sounds like they take the short, dilated bowel and cut it in half long-ways, then sew each half back together long-ways to creat two long skinny tubes of bowel. They are connected together to make one long skinny length of bowel.
I have read that this procedure doesn't work as well as the newer STEP procedure because there is a high occurance of redilation of the bowel which can affect motility. Some of the patients who have had the STEP procedure first had the Bianchi one, which doubled their intestinal length but did not cure them of short bowel syndrome...
The STEP procedure described by the above hospital is a new procedure created in Boston. There are more hospitals starting to do it as well, but I found that there is an older surgery, first performed in the 80's, called the Bianchi bowel lengthening procedure. In this one, it sounds like they take the short, dilated bowel and cut it in half long-ways, then sew each half back together long-ways to creat two long skinny tubes of bowel. They are connected together to make one long skinny length of bowel.
I have read that this procedure doesn't work as well as the newer STEP procedure because there is a high occurance of redilation of the bowel which can affect motility. Some of the patients who have had the STEP procedure first had the Bianchi one, which doubled their intestinal length but did not cure them of short bowel syndrome...
And HERE is a one-hour video of the surgeons at this hospital actually PERFORMING the operation, with a running commentary and a doctor answering questions the whole time. I didn't watch it all yet, but very cool! Go to the website below and click on "view live webcast"...
Thank you Gompers, I watched this and it explains, and shows the operation very well. I was glued till it finished. It gives me hope that it will work and sounds like it has been working for the ones who have already received the procedure.
Now, LA, go to work and tell your #1 attending, "Wow, I saw a video of that lengthening proceedure. It was awesome!! I hope we can get a surgeon that knows how to do that soon!"
Now, LA, go to work and tell your #1 attending, "Wow, I saw a video of that lengthening proceedure. It was awesome!! I hope we can get a surgeon that knows how to do that soon!"
Put a bug in her/his ear, you know???
I already e-mailed the link to 2 other nurses, and intend to talk to our surgeons about it the next time I see them.
LOL, they won't hear the end of it from me till we're doing it and putting our babies on the registry for tracking.
IMO, this grandma gets it more than some of us nurses. How rare is it that a 6 month old, 9mo, or older has never licked a sucker, ice cream, or had chocolate? They never get to go outside and feel the sun, wind or rain on their faces. Everything we take for granted. Our babies are the ones missing out. They need those normal experiences that we can't give them. Isn't it torture to not get to lick something sweet, and to only have the special formulas that we have for them. So what if it came out in the ostomy bag, at least the nurse knew where it came from. We need to be more lenient with families that know that their children may not make it out of the hospital. As long as it is not hurting him, his formula probably comes through just like that dye from the sucker.
Update on this baby...I just took care of him and found out he was probably sharing the sucker with a sick sibling or parent...he ended up getting sick and needing O2 and antibiotics...along with Albuterol. The Neo was upset because he got sick after he visited the cafeteria with family and had this sucker.
So, have to say I changed my mind and think these babies are way too fragile to be exposed to stuff like this. Maybe just a trip outside would be better than around a bunch of people in the cafeteria.
Actually, our OT dept uses suckers for our babes. Obviously if the kid is NPO, that's another issue, but a little lick of a sucker can be great for combatting oral aversions.
Update on this baby...I just took care of him and found out he was probably sharing the sucker with a sick sibling or parent...he ended up getting sick and needing O2 and antibiotics...along with Albuterol. The Neo was upset because he got sick after he visited the cafeteria with family and had this sucker.
So, have to say I changed my mind and think these babies are way too fragile to be exposed to stuff like this. Maybe just a trip outside would be better than around a bunch of people in the cafeteria.
I'd be upset if I was the Neo too! What in the world was this baby doing in the cafeteria? Is this common in your unit? That is the last place I'd want an immunosupressed baby to go.
LaNICUnurse
83 Posts
I appreciate the long windedness. You state my feelings exactly. If I, also, saw just one live long enough to recieve the transplant, I might feel differently. But all of the one's I have ever seen in my 14 years of nursing in NICU, have died horrible, long deaths. Never able to stay out of the hospital, and ending up getting pneumonia, or some other infection. I feel like we do these parents an injustice by not telling them exactly how long and hard their baby's life is going to end up being. I feel that if they knew, they would allow us to let them go when they are so sick that it would be a relief to their small bodies.
We do have surgeons that are trying the lengthening. But, until I see some outcomes, I'll reserve judgement.