Loralai

I don't think we should be too quick to blame the influx of people on them "lacking common sense" or having to teach them the "basics". I have seen several media reports now that seem to TELL people to not take any chances, go to the Doctor/Hospital if you start to exhibit flu symptoms, don't wait as this is a fast progressing illness, etc. It's conflicting information. One day you see a report in your local newspaper of a perfectly healthy child dying from it in a matter of a week. That weekend you or your child starts to feel sick. In their minds it comes down to "am I going to take a chance?" Do you wait it out over the weekend to try to get in to see your Doctor? After all, if the ED's are swamped imagine what the Pediatrician's and Family Doctors are experiencing! We are telling people, who aren't trained in the medical field, who don't have degrees, to assess and self-diagnose how serious or not serious their symptoms may be. Should they err on the side of caution? And on the flip side, can they afford in these economic times to miss that much work if it is the flu? They've all heard through the media that Tamiflu must be given within 48 hours. I think it's just a large amount of information that we are expecting non-medical individuals to weigh and decide.

There appears to be a number of doctors who have spoken out against this case, that this girl does not have dystonia but a psychogenic disorder. As one doctor put it "In other words - her symptoms are not neurological, they are psychological. This does not mean she has any insight or voluntary control over her symptoms - they are involuntary and "real" - just not neurological in origin. Symptoms such as this are not uncommon reactions to emotional stress in some individuals." Some notable doctors who have spoken out against this case: Dr. Stephen Grill from the Parkinson's and Movement Disorders Center of Maryland, the Dystonia Medical Research Foundation, neuologists and more. You can read their findings here: http://www.theness.com/neurologicablog/?p=1152 http://scienceblogs.com/insolence/2009/11/dystonia_from_a_flu_vaccine.php "The movements and symptoms that Ms. Jennings displays on the public videos I have seen (linked to above) are not compatible with the diagnosis of dystonia, or any other movement disorder. Dystonia is one type of involuntary contraction of muscles. It can be reduced or exacerbated by certain movements or positions, and there are "task specific" dystonia, such as writer's cramp, that come out only with certain activity. Jennings does not display the type of movements that are consistent with dystonia. Her speech and movement are, however, very suggestive of a psychogenic disorder. This also seems to be the consensus opinion of experts who have viewed this case. The Dystonia Medical Research Foundation had this to say about the case: Because of the concern of individuals with dystonia as to whether or not to get a flu shot because of this reported case, we have sought the opinion of dystonia experts on this case. Based on the footage that has been shared with the public, it is their unanimous consensus that this case does not appear to be dystonia. Since there has never been a validated case of dystonia resulting from a flu shot, the experts polled believe this case should not deter anyone from getting a flu shot. As with any medical procedure or treatment option, the DMRF encourages you to discuss the risks and benefits of the getting the flu vaccine with your doctor." It seems anti-vax groups are using this woman as a platform for hysteria against the H1N1 shot and didn't do their background research.

Yes, you were expecting too much. Most people have never seen death before. They don't know what it looks like, what it sounds like. Their loved one looking tired with shallow breathing means to them that they just need a bit more rest, to a nurse it means they are dying. The shock of just accepting that a loved one is seriously ill is sometimes too much for a family to comprehend. Especially when such a short while ago you remember them as a vibrant, healthy, and active individual. You were also expecting this relatively young individual at 50 to fully accept their death, to plan for it, to know what to do. There are many people in this world have never had to plan a funeral, who wouldn't have the first clue where to start, who to call, how to make arrangements. The death of their loved one could, quite possibly, have been the first experience this family had with making these plans. What you experience on a daily basis and makes perfect common sense to you, is something that many families honestly have never had to deal with.

As just a note, since I have a child with a bilateral cleft lip and palate and was actually and truly confronted by a NICU nurse who accused my husband and I of inbreeding, clefts can be caused by a number of reasons. Certain medications can cause clefts (seizure medications), smoking and alcohol can, vitamin deficiencies, environmental, or genetic. Sometimes it's a fluke as well, as was the case of my son considering I can rule out everything else. I just thought I would pass that along since I was confronted by a nurse who had that wrong impression.

How do you explain that to the parents? I mean, rightfully so, any parent would probably lose their temper and it would be uncomfortable... glad the little one turned out okay. Is their any obligation to let the parents know the entire story?

I guess I don't understand the situation at all either. Why exactly do they have an NG/G tube? If the medical condition that they've got is the reason for the feeding tube then perhaps no... it wouldn't matter which feeding tube is being used for insurance purposes just the fact they have the feeding tube. Of course, I honestly haven't heard of night nursing for JUST a NG tube or a G tube. Feeding through either tube is pretty much the same unless you are saying they have to place the NG tube every night and now with the G tube they aren't.

My son was a 27 weeker born with a bilateral cleft lip and palate. They kept him on an oscillator until he was able to move to a high-flow nasal cannula and did wonderful on that. They were also considering a method a doctor had heard about in the UK with an oxygen mask secured to the face, a hat, a kind of rigged CPAP. Since doing a regular CPAP won't work. The lip repair is usually done when the baby hits 10 pounds. Rule of 10's: 10 pounds, 10 weeks, 10 g hemoglobin. They'll also put in a palate prosthesis then. When the baby is about a year old (adjusted) they'll do the soft palate repair. The hard palate and bone graft is done ages 4+. And the other question, about 1 in 750 babies born have a cleft lip/palate.

I had no idea there were policies against this. For my son's 100th day in the NICU (not that we were celebrating but it was a BIG milestone) we had Blooming Cookies deliver a huge gift basket for all the nurses in the NICU filled with treats. Would something like this be considered different then on an individual nurse basis? We weren't trying to butter anyone up, my son all ready had his Primary Nurses but we thought it would be a nice gesture since by then nearly every nurse had been with my son on some shift. Very interesting discussion.

I'm not a nurse, but had a 27 weeker who Ibuprofen worked on for his PDA. He wasn't stable by a long shot; born 760 grams, on an oscillator for 2 months, IV's in every limb and too many medications to remember, 2 PICC lines, birth defects, too many infusions to count, IVH Grade 2, etc. etc. Of course, according to the neonatologist, the Ibuprofen then gave him pulmonary hypertension. He now has a small AP collateral (L->R shunt) and mild LAE rather than PDA though.

I'm wondering about the communication in various NICU's with the parents. Does someone such as the Neo or NNP give the parents a call at least once a week to fully update the parents on the baby's status? Or is your NICU dependent on the parents calling in order to give them updates on their baby. For what issues do you feel would be valid to call the parents? Pulling blood out of a feeding tube? Collapsed lung? Test results for ROP or IVH? I've recently had a 27 weeker, 1 lb. 11 oz. due to HELLP who is still on an oscillator after 5 weeks and on iNO for 4 weeks now. His first 2 weeks we received daily updates from a Resident and then our baby was switched over to the NNP's to look after him and all communication seems to have stopped. We've asked several times now if we could receive updates from them, not on a daily basis but if there are changes in his condition. The only time they'll call is when we let the nurses know that we haven't heard anything from them in 2 weeks plus. Otherwise we are left to call in to the nurses for any updates which are always brief. The nurses just go over his current oxygen settings, weight, how much his feedings is at, any residuals etc. We've also expressed that we'd like more information on his prognosis but no one seems to be upfront with us. I know that in the NICU there's never black and white. That what they believe one day can turn a 180 the next. But we have concerns and the nurses and the NNP seem to avoid any questions concerning long-term and brush them off. I know there's never a guarantee but certainly a doctor or NNP should be able to give us more information for our particular baby? Concerns or side-effects of medication he's receiving? I believe we are having trouble interpreting information given to us as anything that's happened to our son and our questions are met with "this is common". His latest partially collapsed lung and possible infection we've been told by nurses is just "something we see all the time". And I know this is typical but certainly the cards start stacking against a baby's favor at some point and my husband and I aren't even sure that someone would call us or give us a straight prognosis if there was a serious problem at this point. This is a unviersity hospital with a level III NICU. He's in very good care, and we trust the nurses. We are just frustrated by the lack of communication despite asking several times if we can receive updates if there is something that significantly changes with his care (i.e. lung collapse, bleeding from the stomach, etc.) and don't want to come off as overbearing parents. Is there any suggestion as to how we can possibly improve this communication or is this just the norm? I know that it can be very busy and want to respect the nurses and NNP's time.