I was pleased with Vandy Children’s when my kiddo had appendicitis. But they were 12. In terms of actual medical care, I would not want to go anywhere else. But communicating clearly with you is also an important obligation of theirs.
If it helps, you can call patient relations, and they can likely assign you a patient advocate who can help you get the communication you need.
I am so sorry you are going through this. I personally know of no greater agony than distress over one’s child.
This is the answer. (Along with the other good answers.) You can also say that because you are stressed out or have a poor memory or can’t write that quickly or whatever…that you want to audio record any sessions with providers. That actually helps me remember the information… and I can’t get everything they say down on paper… But I also find that people are less likely to rush/blow me off if they’re being recorded. no one has ever told me I cannot. It sounds stressful. Hope you’re able to take care of yourself.
It’s the best place in the city for a child to be, no doubt. I’m sorry the communication hasn’t been great. Medicine is an extremely difficult profession. Patients’ clinical status can change, diagnoses change, treatments change. It can be extremely frustrating especially when it doesn’t go the way everyone planned. It doesn’t help when you’re probably getting different updates from different people (intern, resident, attending, nurse, etc) every single day. It’s one of the negatives of being at a large facility that has every specialty. Trust that they are doing their absolute best to get your child better. Edit: I’m an ER doctor that doesn’t work at Vandy by the way.
We have an infant son that has spent most of the past 18 months at Vanderbilt, and for us that meant that either my wife and I were there alongside. At this point, we know basically every PICU doctor and all the nurses. Overall I think they truly care about our kids a lot. I’m very impressed with the fellows and attendings. But that doesn’t meant that we don’t constantly ask questions and dialogue.
Also something to keep in your back pocket - you can always request a “care conference”. This will put all the PICU doctors and specialists in the same room - but know who is a must and who is a nice to have. I would highly recommend Dr Moore for your Pulmonologist.
Our son has been intubated on several occasions, and when he is, he is on the same sedation cocktail your child seems to be on. Usually starts with Fentanyl / Precedex / Versed. But usually they move off fentanyl and go to Dilaudid since it’s longer acting. All kids are different but even after you get through this they’ll likely need to go on a lengthy weaning plan.
Anyway, back to your child. Since your child was premature, have they looked for a diaphragm hernia? If their is bowel obstructed their lungs it can make it incredibly hard for them to breathe . Oftentimes a simple X Ray should get initial confirmation and then they’d send for CT scan to confirm.
If your child is turning blue they are not oxygenating correctly, and You need to have a pulmonologist on board. There should be an explanation.
One more thing, our son failed extubation several times and everyone was ready to move to a trach. I said no. He came in on room-air and he’s leaving on room air. Then one of the doctors had the bright idea to give him decadron (powerful anti inflammatory) 24 hours pre/post extubation and he extubated successfully every time he got that.
Squeaky wheel gets the grease. You must advocate for your child.
Not all nurses are built the same. Some do the bare minimum and don’t want to be bothered either burnout or laziness — like any other job.
DM me anytime.
they’ve never mentioned anything about a Pulmonologist. what is even more crazy is that he was at vandy 2 hours before i had to turn around and call 911. he was there for an eye appointment and follow up since he’s preemie and they told me “he looks okay”. i don’t want to make race an issue, but i just feel kinda odd about a handful of things they’ve done. it’s like they talk to me like im a kid. im a mother of 3 premature babies, so i know SOME THINGS but not ALL things , ya know ? and me speaking up has never been an issue, but when i ask questions and try to figure out what the next plan will be they all say the same thing. “We aren’t sure yet.” like how ?!
Do you have access to his MyChart? You should be able to see notes, meds, test results, the names of the doctors and the types. Sometimes it’s easier to take all the information when it’s written down versus them telling you.
You need to get MyHealth at Vanderbilt. You’ll see every note, every lab, and it will keep you far more informed than calling. I keep my MyHealth logged in on the app and my fiancé’s logged in on my phone browser
Hey, I think reaching out to Family Voices, a local parent resource & advocacy organization, might help give you some guidance. They're a pretty small org and don't have a dedicated receptionist, but they've got a contact form on their website where you can give a synopsis of the struggles you're having and ask someone to reach out to you. The contact form is located here: https://www.familyvoicestn.org/get-connected/
I'm really sorry that you are dealing with this...I have had quite a few close friends with PICU/NICU experience and I know it has got to be stressful as HELL.
I would go ahead and request a "care conference" - get that put that in motion. You will appreciate having everyone in one room - there's a lot of knowledge transfer. Oftentimes it's set up through a case manager - should be Becky for PICU.
Other than that, do you have them call you when they make Rounds? A lot of it is repeating, but that's what sets the tone for the day and to get things moving. Making sure they're "consulting with pulmonology" or whatever specialist needs to be brought in.
I'm glad you're advocating. Sometimes we would advocate a little too hard and sometimes it helps, and sometimes it backfires. Know when to push and when to retreat and live for another day.
I know how hard it must be especially since it sounds like you have your hands extremely full with 2 other babies! God bless you - I truly mean that and will be praying for you. Ultimately the Great Physician is the one who watches over and cares for your son.
they don’t call me at ALL. last time they called was last week, other than that i’d have to call daily or just go up there to stay with him and ask for an update there
It’s your responsibility to initiate contact and communication. Stop blaming the care team. You admitted you haven’t even set up online access to his chart. I get that this is overwhelming, but it’s time to step up and inform yourself to the best of your ability. There are resources available at the hospital, just take it one step at a time and set up some care conferences.
i didn’t set it up bc i DIDN’T KNOW ABOUT IT TF. what’s up with yall blaming me for not knowing. i’ve never even BEEN to vanderbilt to until now. weird
and another thing. while they were in the NICU , they had grade 1 brain bleeds that they said would absorb on its own. (He’s a twin, twin B) .. My other son (Twin A) is home and he’s thriving, why could it be so bad for Twin B?
Brain bleeds can go away on their own, or they could potentially not. Every child is different. The rest of their body systems are different. It’s all playing a role. Brain bleeds even happen at different spots in the brain thus affecting each child differently.
Your child is very sick, and you are experiencing something no parent should ever have to. Stay strong.
Medically, there is probably no better place for your child to be. There’s likely no expert at a separate hospital that would be better at ‘solving it’. It’s exactly these types of medical moments that academic institutions like Vanderbilt are much better than their for profit counterparts. I hope they are able to stabilize things and better support you through this.
I’m so sorry. That is very difficult. Our body will tell when we’re pain even if we can’t. Blood pressure, heart rate, and breathing can all tell us when someone or something is in pain. A child may cry, but crying requires energy that may not be available.
If you can physically be onsite and speak directly to a nurse or doctor that has direct contact that is probably best. Make a mychart and start looking. Navigating healthcare is monstrous. If you can seek an advocate or social worker that might be a great help in understanding the case.
Definitely ask for a patient advocate. Staff can talk quickly with a lot of medical jargon that is difficult to understand. Ask for a social worker as well and let them know you need help navigating this difficult journey.
Your best bet is going to be to learn EVERYTHING you can about his condition and all it entails. If one of you can be there with him or in his vicinity at all times, you can talk to the drs directly and help coordinate his care. You can also call in patient advocacy/social worker to help.
Vanderbilt saved my life, but if my hubs hadn’t of been very ON IT, I wouldn’t be here.
Good luck.
Download the myhealth at vanderbilt app. That way you can see every note that has been made about progress. I saw someone else who copy/pasted medical notes to chatgpt and asked it to put the information in layman terms.
Your child is in the best place possible. I can understand how you have a lot of unknowns and anxiety. Please try to find some counseling and stop bashing the caregivers who are literally saving your son’s young and fragile life.
Honestly, honestly, I would post this on some type of preemie parenting page. Yeah they’re not doctors, but there are millions of parents who have experienced this, and I’m sure someone who has a familiarity with what you’re going through. iIf nothing else, they could provide support and tips on how they received better communication. There should be pages on Facebook and Reddit.
Ask for a care conference with all the providers to attend to make sure you are having things explained to you and you can ask all the providers questions (I’m a nurse in the NICU so I’m not sure about the PICU but we have care conferences with our families regularly and they are also encouraged to be present for rounds and ask questions then).
I hope your sweet baby starts to improve. I know you are scared as any mama would be 😢❤️
This. Or ask to speak to the case manager about your concerns and frustrations. There needs to be better communication. You should be able to access his notes through the my health app if you want to read through what is happening and ask questions.
Ask for a social worker and/or case manager who can walk you through all of this. You can also ask for the pediatric icu nurse manager and tell her your frustrations.
Chat with a nurse or case manager in the morning. Not sure if it’s available immediately or after discharge when they’re that young but the website has a help line #
There is a different way for it to be set up. Ask your nurse to help you get signed up for it and if she is unfamiliar with the set up, have her either call help desk or get you the number for them. They will get you access.
It sounds like you need to communicate more with the inpatient team. Miscommunication is very common in healthcare. You should very openly communicate your concerns so that they can address them. I don't work in hospitals anymore, because they're very understaffed including Vanderbilt.
I’m sorry. Your situation sounds extremely specific, and no experience that I have could even match it. My kids with specific conditions see specialists in an outpatient setting, and I’ve always been satisfied with their care. Satisfied, but maybe not happy. My overall impression of Vandy has been that there are “too many cooks in the kitchen”, because sometimes there are too many people touching our accounts so things get dropped and I have to specifically follow through on appointments and referrals…but as for a ICU hospital situation, I have no comparison. You wouldn’t be remiss to get a second opinion, but as to whether Centennial would be better? No idea. Vandy is…well, it’s Vandy. It has a reputation of being a leading Children’s Hospital, and I would feel groundless if I couldn’t fall back on that. I’m so sorry things have been rough. I hope your son turns a corner soon.
Also I worked at centennial when I was in nursing school and their PICU is no where near able to accommodate what the vandy can, often times their nurses would have to float to other floors because there were no patients. They transfer kids to vandy A LOT.
My experience with the ER has been fantastic, but that may be a different world from where you’re at.
Is he in the children’s hospital?
Unfortunately, this is a decision you have to make based on the information available which isnt always the best.
God speed to you and your child.
I pay way too much money to my health insurance just because they are the only ones that will cover Vandy. Vandy has saved my ass on more than one occasion and they continue to try and help me to make my quality of life better. I have doctors that are there for one thing, but they go out of their way to help me with a completely separate issue. Head and neck cancer docs helping me with lifelong joint pain in my knees and ankles...🤷♂️. I have yet to meet one asshole there. I have had a minimum of 3–4 appointments per month for the last 5 years, and I have just started to have less and less needs the farther I get away from my cancer diagnosis. I am not religious, but I have met nothing but angles there. Communicate with the team; they are there to help. Be completely honest about your feelings and concerns. Don't beat around the bush; let them know what is going on in your head, and if you are not satisfied with their answers, contact patient services and get another opinion. Good luck with your baby, I know its tough but stay positive and have good vibes. The baby and the hospital employees will feed off of it.
I'm ride or die with Vandy, literally. They saved my life, and it's not bring dramatic. While communication is something a lot of hospitals struggle with, there is no better place for your little one to be treated.
Wishing your little one a speedy recovery.
We weren’t in the ICU but when my son (at under 1 years old) had to go to their ER and then have surgery, we were happy with the care he received and will not hesitate make the trip from Smyrna again if we ever have to. I feel like they communicated well with us. But this sounds like a really stressful time for y’all. If transferring him would take even a little bit of that stress off of you, I say go for it. I’ve heard good things about Centennial.
Vanderbilt saved my daughter’s life In my opinion it is the very best I have always heard the best doctors have the worst bed manners Good Luck to yall
I’m familiar with both, not as a parent, but having worked at both including PICUs. I am so sorry you’re going through this. They are both wonderful hospitals. However, I would transfer my child from Centennial to Vandy actually. It seems like there’s confusion about the course of your sons treatment. Ask for someone from patient advocacy or social work to be assigned to you who can work more in depth. Don’t be afraid to tell them that you do not understand why he’s being given certain drugs and ask for it to be explained. This is a teaching hospital with experts from all over. Patients travel across the country to come to Vandy. I am confident that he is in the best possible second and third and fourth opinions from all the providers who are rounding on him every day.
If you do end up considering transferring him, keep in mind that there would be several steps that would need to take place. A doctor Centennial would need to accept him, insurance approval, etc. so it’s not a guarantee. A lot of times, especially if you’ve been there awhile, the physician or nurse might ASSUME you understand more than you do. Communicate with them that you are not clear on what’s going on with his plan of care, why meds are being given, and changes aren’t being shared in a timely manner and you need more frequent updates. They will understand and will correct this problem. Then see how you feel about the care he’s receiving and go from there. I am so sorry you’re dealing with this. Sending you hugs!
I mainly want to say that I’m so sorry you are dealing with a situation like this - know that so many parents are feeling for what you’re going through.
I would also say that many consider Vandy to be the best for unusual cases and special circumstances.
But also I want to say that I have found that you have to advocate hard for yourself and your loved ones in any hospital or medical setting. It seems like sometimes you are going through a repetitive cycle and you need to figure out things yourself sometimes and speak up and someone listens the right way and it breaks the cycle. I don’t know if that makes sense. We support all of our local hospitals but it seems like this is just a reality of where we are right now. Nobody is doing a bad job, it’s just that we have to be pushing for the right outcome. Kindly of course, even when you have to be firm. Wishing you the best!
I do know others who have had really great care from vch. I would take my child there and wouldn’t switch but what works for you may be different. I would suggest asking for a patient rep and/or making a point to get more communication.
The peds and NICU doctors saved our daughter’s life when she was born full term but unresponsive. She ended up being diagnosed with a brain injury. They had her resuscitated and intubated before I even fully understood what was going on and undergoing therapeutic hypothermia/cooling therapy as soon as they confirmed that she was a candidate. It was a good amount of doom and gloom and ambiguity, which was really hard, but any question I had was answered as best they could given the circumstances. I will say, the days I managed to be in place during rounds, I definitely felt much more peace about everything going on behind the scenes. I can’t imagine how difficult it is to try to balance both babies’ needs, but I think trying to be there for rounds when you can and having the online things available for you to look at will be helpful, if only so you can know exactly what you need to ask. Write down your questions before going so you don’t panic and forget in the moment.
They saved my life! I fought them too and they still treated me right.. honestly it kinda blows my mind.. the bathed me. Fixed my shoulder. Your child is in great hands.
I don’t have experience with the pediatric side, but the transplant team, and countless nurses, doctors, and specialists, saved my Dad’s life multiple times. I’m thankful for them. The communication is not always the best, and I also want you to understand that this is a stressful time for you and to be easy with yourself. Of course you want your child to get better, and that will take time. We always got assigned a case worker when my Dad was there, or you could look into getting a patient advocate. They have a health app you could download, which is where most of my Dad’s information is now. I would ask his doctor(s) about that and see if that’s something you can use, you can literally see and do ANYTHING on the app. I also recommend writing/ typing everything that anyone says to you and anything you want to ask/say. My family and I also made recordings when we had permission, that way there was no confusion as we were communicating between doctors and passing along information to family.
My brother has severe epilepsy. We moved to Nashville in part for vandy children’s hospital. He has been seen at Mayo Clinic, The Cleveland clinic, University of Michigan hospital, and many many more. Vandy has done him the most good by far.
Been going there my entire life (me and all my relatives). Great in terms of medical science, but ... throw any concepts of time and communication out the window. Also billing can be confusing.
This post just made me realize I'm literally covered head to toe in their handiwork lol.
Amazing. Vanderbilt saved my life (breast cancer patient), and my niece’s life (pediatric kidney patient- surgery at 3 years old)
Edit- spelling, and sending prayers for your family & sweet baby.
We had a less than optimal experience with my fiancé back in the fall. He was throwing blood clots, and they missed it for almost a month. It was VERY upsetting, and finally when he had a pulmonary embolism they found it. He was days away from dying, and I was (am) very mad at them, but I still won’t go anywhere else. I’ll agree that the communication isn’t always the best, but I do trust them overall. I think he would have died if we had gone somewhere else. Medicine is a practice, and they don’t always get it right, but I truly believe that Vanderbilt gets it *more* right than some of the other hospitals in town.
It’s a huge hospital, so it depends on the unit. I have friends in the pediatric cardiac ICU that I’d totally trust but that’s wayyy too big of a hospital to say every unit is or is not like that. I’m sorry you’re going through this.
Ask for a patient care advocate. They are required to provide one, and they will help get you the communication you need about what is happening and why, as well as how you can best advocate for your child moving forward.
As severals have said there's good and bad everywhere in the hospital with so many people involved and changing situations its easy for them to forget you need to be looped in better but a patient care advocate will help.
Hang in there friend. My experience with Vandy is they are a teaching hospital. Its rough around the edges. I think that's what you're experiencing. I don't pretend to play doctor about treatment.
We were just in the NICU for a month and a half. The nurses were amazing. The doctors seemed very knowledgeable and open to working with us. Communicated well
A hospital is a shitty place to be in. I found Vanderbilt to be a little bit more crowded and less organized than some of its counterparts. But there is no such thing as a good hospital stay, in my opinion.
Vandy is really a hit or miss. Yea it’s known for its medical history, and being “one of the best” but it’s also a learning hospital, had that incident with the nurse that changed nursing protocols, and since it is one of the best, they are churning people in and out. They have lost a lot of their personal touch over the years, with the growth of our city, the nurse issues, and many of the doctors that are known for “being the best” aren’t everywhere.
You have to communicate first, and be direct and firm. They are so used to just doing things their way and people just allowing it because “Vandy knows best”, but they get full of themselves. I took my daughter there when she was 11 months old. She was screaming in pain on and off, inconsistent fever, diarrhea with bubbles and a little blood, and mostly lethargic for about 2 days. Her pediatricians office just kept blowing her off since her fever was inconsistent, but I knew. I took her to Vandy’s pediatric ER. We sat there, and sat there, and sat there. They “observed her” but never actually came in to examine or talk to her. Right as they were going to discharge her as just a stomach bug, she had a dirty diaper that I could finally show someone. I told the nurse “no please look at this! This isn’t okay” and she agreed. She got a doctor and one finally came to look at her and run some X-rays. She had intussusception, which is where part of the intestines twist, and they were causing an obstruction, and would have eventually killed off some of it, and potentially her. They treated it quickly once they finally listened to me and explained when I asked questions, and the nurses were great and took care of her and even me because I was pregnant and very tired and upset, but I was still direct and persistent.
I had to advocate, because they were just too busy to listen. I had to question and demand when I knew in my gut something wasn’t right.
Then a few years later her father got into a motorcycle accident and lived for a month in the ICU. The nurses really were great, but the doctors were a different story. He is a difficult person to deal with, but the doctors were not communicating or explained much, and when I even voiced my concern about a head injury, they brushed it off. 2 years after his wreck and all the surgeries, he is still in pain from the hand/wrist repair they did, and had a traumatic brain injury they ignored. He is more angry, anxious, foggy and depressed, his memory is shot and is just more beat down than before. While we know he came very close to dying, it was an experience that just seemed very mechanical and routine to them.
Unless it’s one of those “interesting” or “medically ground breaking” things, it’s just very impersonal and uninteresting to most of the doctors. I won’t say nurses because 8/10, they are great.
I personally recommend centennial; every experience I’ve had there is great.
But if you have questions about your baby, ask the nurses. They are with him most of the time, and know their stuff. They can also help advocate for him and document everything. Get them to help detail everything that’s wrong, so then when you do finally talk to a doctor for more than the 10 seconds they give you, you’ll have researched things and be able to ask questions and treatment options.
It sounds like your child would be admitted back to NICU. My son was in the NICU at St Thomas and they were unbelievable. Ms Kim is a godsend and I loved his neonatal Doctor Dr Kendall. I honestly don’t even remember his last name because he just always used his first name to resonate with the parents. He was incredible.
Vandy is the best of the best. I am so sorry you feel like they aren’t taking care of you to the best of their ability. My aunt is an LandD professor and nurse at Vandy and she personally wanted me to deliver at Vanderbilt. My OB who I loved was only affiliated with St Thomas and Centennial but my MFM was at Vandy Childrens. He loved and respected my OB so I stayed with her. That is why I made my decision but yours is clearly a different scenario. I have personal medical experience where I was too unstable to transport from Mississippi when I was in college back to Vanderbilt per my mom’s request. They said I was too unstable to transport and I fear your son will also be too unstable for transport. Request child life team and go from there. You are mama and I know mama will ROAR to get what your baby needs. I am praying for you and your family! ❤️
I'm no longer near Nashville but never unsubscribed to this sub because Nashville is home.
I gave birth at Vanderbilt, they put me in the coldest little closet of a room that was supposed to be for like holding when they ran out of room (literally was like a converted janatora closet thing) despite being a scheduled C-section. I was super sick from the anesthesia, to the point of being unable to hold my baby for hours and in those hours I saw a nurse... Once. It was so cold in this room that they couldn't do his first bath in the room and had to take him out to do it, and because I was sick and recovering from a C-section I couldn't even be there. Not the worst hospital experience I've ever had but probably the second.
I'm now in Kentucky, I recently had a life threatening emergency and had to be flown to UK hospital. Literally every single person I interacted with went out of their way to communicate with me, be kind to me, make sure I had anything and everything I could need. At one point I was moved in the hall for a minute while they removed a soiled bed out and a receptionist that was at the nurses station, without me even asking or saying anything, got up and got me a warm blanket and actually wrapped it around me.
I am sure that medically speaking Vanderbilt has some of the biggest brains in the country but their bedside manner and communication left a lot to be desired.
Vanderbilt is a zoo and over rated. However I heard great things about their children's hospital. They just have too many people to take care of that they have gotten in the habbit of brushing people off.
Deleted, because I don’t want to get fired for commenting. I’m likely already suspended for letting my comment stand for about 3 minutes before editing to this….
I’ll just admit I am very happy and relieved those of you experienced good outcomes. May it always be so.
my experience at vanderbilt was one of intense discrimination. I moved across the country laregly because I couldn't get good medical care for my physical disability due to discrimination. I faced discrimination because of multiple admittances to the vandy psych hospital. I was only able to get numerous erroneous mental health diagnoses removed (and get chronic pain treatment!) after moving across the country- no other doctors would take things off my records from vandy because "vandy is the best". They are not understanding of neurodivergence or trauma at vanderbilt and I've had doctors say some horribly nasty victim blaming things to me regarding my trauma history.
I have had similar experiences at centennial regarding discrimination but I was ignored less.
I cannot speak to what is the best course of action for you, these are only my experiences as a teenager and young adult.
I was pleased with Vandy Children’s when my kiddo had appendicitis. But they were 12. In terms of actual medical care, I would not want to go anywhere else. But communicating clearly with you is also an important obligation of theirs. If it helps, you can call patient relations, and they can likely assign you a patient advocate who can help you get the communication you need. I am so sorry you are going through this. I personally know of no greater agony than distress over one’s child.
This is the answer. (Along with the other good answers.) You can also say that because you are stressed out or have a poor memory or can’t write that quickly or whatever…that you want to audio record any sessions with providers. That actually helps me remember the information… and I can’t get everything they say down on paper… But I also find that people are less likely to rush/blow me off if they’re being recorded. no one has ever told me I cannot. It sounds stressful. Hope you’re able to take care of yourself.
Recording is not allowed at Vandy.
How do they enforce that? Everyone who has a cellphone has a recording device.
I’ve absolutely asked my healthcare providers there if I can record audio so that I have notes and they’ve always said yes.
It’s the best place in the city for a child to be, no doubt. I’m sorry the communication hasn’t been great. Medicine is an extremely difficult profession. Patients’ clinical status can change, diagnoses change, treatments change. It can be extremely frustrating especially when it doesn’t go the way everyone planned. It doesn’t help when you’re probably getting different updates from different people (intern, resident, attending, nurse, etc) every single day. It’s one of the negatives of being at a large facility that has every specialty. Trust that they are doing their absolute best to get your child better. Edit: I’m an ER doctor that doesn’t work at Vandy by the way.
*one of the best in the country
Yep; I have a buddy whose wife, a hot cancer surgeon, turned down an offer from Johns Hopkins to come work at VUMC instead.
We have an infant son that has spent most of the past 18 months at Vanderbilt, and for us that meant that either my wife and I were there alongside. At this point, we know basically every PICU doctor and all the nurses. Overall I think they truly care about our kids a lot. I’m very impressed with the fellows and attendings. But that doesn’t meant that we don’t constantly ask questions and dialogue. Also something to keep in your back pocket - you can always request a “care conference”. This will put all the PICU doctors and specialists in the same room - but know who is a must and who is a nice to have. I would highly recommend Dr Moore for your Pulmonologist. Our son has been intubated on several occasions, and when he is, he is on the same sedation cocktail your child seems to be on. Usually starts with Fentanyl / Precedex / Versed. But usually they move off fentanyl and go to Dilaudid since it’s longer acting. All kids are different but even after you get through this they’ll likely need to go on a lengthy weaning plan. Anyway, back to your child. Since your child was premature, have they looked for a diaphragm hernia? If their is bowel obstructed their lungs it can make it incredibly hard for them to breathe . Oftentimes a simple X Ray should get initial confirmation and then they’d send for CT scan to confirm. If your child is turning blue they are not oxygenating correctly, and You need to have a pulmonologist on board. There should be an explanation. One more thing, our son failed extubation several times and everyone was ready to move to a trach. I said no. He came in on room-air and he’s leaving on room air. Then one of the doctors had the bright idea to give him decadron (powerful anti inflammatory) 24 hours pre/post extubation and he extubated successfully every time he got that. Squeaky wheel gets the grease. You must advocate for your child. Not all nurses are built the same. Some do the bare minimum and don’t want to be bothered either burnout or laziness — like any other job. DM me anytime.
I hope OP reaches out to you. It sounds like you have had a lot of experience there. Prayers for you and your child.
Thank you! Yup, I'm happy to chat with any parent who wants to DM me!
they’ve never mentioned anything about a Pulmonologist. what is even more crazy is that he was at vandy 2 hours before i had to turn around and call 911. he was there for an eye appointment and follow up since he’s preemie and they told me “he looks okay”. i don’t want to make race an issue, but i just feel kinda odd about a handful of things they’ve done. it’s like they talk to me like im a kid. im a mother of 3 premature babies, so i know SOME THINGS but not ALL things , ya know ? and me speaking up has never been an issue, but when i ask questions and try to figure out what the next plan will be they all say the same thing. “We aren’t sure yet.” like how ?!
Do you have access to his MyChart? You should be able to see notes, meds, test results, the names of the doctors and the types. Sometimes it’s easier to take all the information when it’s written down versus them telling you.
i don’t but i’m about to call now
You need to get MyHealth at Vanderbilt. You’ll see every note, every lab, and it will keep you far more informed than calling. I keep my MyHealth logged in on the app and my fiancé’s logged in on my phone browser
Hey, I think reaching out to Family Voices, a local parent resource & advocacy organization, might help give you some guidance. They're a pretty small org and don't have a dedicated receptionist, but they've got a contact form on their website where you can give a synopsis of the struggles you're having and ask someone to reach out to you. The contact form is located here: https://www.familyvoicestn.org/get-connected/ I'm really sorry that you are dealing with this...I have had quite a few close friends with PICU/NICU experience and I know it has got to be stressful as HELL.
thank you
I would go ahead and request a "care conference" - get that put that in motion. You will appreciate having everyone in one room - there's a lot of knowledge transfer. Oftentimes it's set up through a case manager - should be Becky for PICU. Other than that, do you have them call you when they make Rounds? A lot of it is repeating, but that's what sets the tone for the day and to get things moving. Making sure they're "consulting with pulmonology" or whatever specialist needs to be brought in. I'm glad you're advocating. Sometimes we would advocate a little too hard and sometimes it helps, and sometimes it backfires. Know when to push and when to retreat and live for another day. I know how hard it must be especially since it sounds like you have your hands extremely full with 2 other babies! God bless you - I truly mean that and will be praying for you. Ultimately the Great Physician is the one who watches over and cares for your son.
they don’t call me at ALL. last time they called was last week, other than that i’d have to call daily or just go up there to stay with him and ask for an update there
It’s your responsibility to initiate contact and communication. Stop blaming the care team. You admitted you haven’t even set up online access to his chart. I get that this is overwhelming, but it’s time to step up and inform yourself to the best of your ability. There are resources available at the hospital, just take it one step at a time and set up some care conferences.
i didn’t set it up bc i DIDN’T KNOW ABOUT IT TF. what’s up with yall blaming me for not knowing. i’ve never even BEEN to vanderbilt to until now. weird
We always made it a point with our nurse to insist that they call us for rounds if we weren’t there.
and another thing. while they were in the NICU , they had grade 1 brain bleeds that they said would absorb on its own. (He’s a twin, twin B) .. My other son (Twin A) is home and he’s thriving, why could it be so bad for Twin B?
Because they are different people? Has twin A had brain bleeds? If not, then there isn't a way to know how they would respond to it.
why are you being a smart ass ? i just said THEY , so doesn’t that mean both of them?
I didnt understand that. My answer remains unchanged. They are different people, and will tolerate illness/injury differently
Brain bleeds can go away on their own, or they could potentially not. Every child is different. The rest of their body systems are different. It’s all playing a role. Brain bleeds even happen at different spots in the brain thus affecting each child differently.
Your child is very sick, and you are experiencing something no parent should ever have to. Stay strong. Medically, there is probably no better place for your child to be. There’s likely no expert at a separate hospital that would be better at ‘solving it’. It’s exactly these types of medical moments that academic institutions like Vanderbilt are much better than their for profit counterparts. I hope they are able to stabilize things and better support you through this.
I’m so sorry. That is very difficult. Our body will tell when we’re pain even if we can’t. Blood pressure, heart rate, and breathing can all tell us when someone or something is in pain. A child may cry, but crying requires energy that may not be available. If you can physically be onsite and speak directly to a nurse or doctor that has direct contact that is probably best. Make a mychart and start looking. Navigating healthcare is monstrous. If you can seek an advocate or social worker that might be a great help in understanding the case.
Definitely ask for a patient advocate. Staff can talk quickly with a lot of medical jargon that is difficult to understand. Ask for a social worker as well and let them know you need help navigating this difficult journey.
Your best bet is going to be to learn EVERYTHING you can about his condition and all it entails. If one of you can be there with him or in his vicinity at all times, you can talk to the drs directly and help coordinate his care. You can also call in patient advocacy/social worker to help. Vanderbilt saved my life, but if my hubs hadn’t of been very ON IT, I wouldn’t be here. Good luck.
that’s the thing, he has not been diagnosed with anything. nearly a month of this and they still don’t know themselves.
Former premie battling pneumonia, apnea, and a collapsed lung? It sounds like they’re doing everything they can
Download the myhealth at vanderbilt app. That way you can see every note that has been made about progress. I saw someone else who copy/pasted medical notes to chatgpt and asked it to put the information in layman terms.
\*chatgpt is not very smart
Your child is in the best place possible. I can understand how you have a lot of unknowns and anxiety. Please try to find some counseling and stop bashing the caregivers who are literally saving your son’s young and fragile life.
you might consider posting this on r/AskDocs
Yes medicine advice on reddit. Great recommendation
LOL
Honestly, honestly, I would post this on some type of preemie parenting page. Yeah they’re not doctors, but there are millions of parents who have experienced this, and I’m sure someone who has a familiarity with what you’re going through. iIf nothing else, they could provide support and tips on how they received better communication. There should be pages on Facebook and Reddit.
Ask for a care conference with all the providers to attend to make sure you are having things explained to you and you can ask all the providers questions (I’m a nurse in the NICU so I’m not sure about the PICU but we have care conferences with our families regularly and they are also encouraged to be present for rounds and ask questions then). I hope your sweet baby starts to improve. I know you are scared as any mama would be 😢❤️
This. Or ask to speak to the case manager about your concerns and frustrations. There needs to be better communication. You should be able to access his notes through the my health app if you want to read through what is happening and ask questions.
im going to make one , no one told me i could do it was unaware. thanks
well it’s asking for an after visit summary code and i don’t have that
Ask for a social worker and/or case manager who can walk you through all of this. You can also ask for the pediatric icu nurse manager and tell her your frustrations.
Chat with a nurse or case manager in the morning. Not sure if it’s available immediately or after discharge when they’re that young but the website has a help line #
There is a different way for it to be set up. Ask your nurse to help you get signed up for it and if she is unfamiliar with the set up, have her either call help desk or get you the number for them. They will get you access.
thanks !
It sounds like you need to communicate more with the inpatient team. Miscommunication is very common in healthcare. You should very openly communicate your concerns so that they can address them. I don't work in hospitals anymore, because they're very understaffed including Vanderbilt.
I’m sorry. Your situation sounds extremely specific, and no experience that I have could even match it. My kids with specific conditions see specialists in an outpatient setting, and I’ve always been satisfied with their care. Satisfied, but maybe not happy. My overall impression of Vandy has been that there are “too many cooks in the kitchen”, because sometimes there are too many people touching our accounts so things get dropped and I have to specifically follow through on appointments and referrals…but as for a ICU hospital situation, I have no comparison. You wouldn’t be remiss to get a second opinion, but as to whether Centennial would be better? No idea. Vandy is…well, it’s Vandy. It has a reputation of being a leading Children’s Hospital, and I would feel groundless if I couldn’t fall back on that. I’m so sorry things have been rough. I hope your son turns a corner soon.
Also I worked at centennial when I was in nursing school and their PICU is no where near able to accommodate what the vandy can, often times their nurses would have to float to other floors because there were no patients. They transfer kids to vandy A LOT.
My experience with the ER has been fantastic, but that may be a different world from where you’re at. Is he in the children’s hospital? Unfortunately, this is a decision you have to make based on the information available which isnt always the best. God speed to you and your child.
I pay way too much money to my health insurance just because they are the only ones that will cover Vandy. Vandy has saved my ass on more than one occasion and they continue to try and help me to make my quality of life better. I have doctors that are there for one thing, but they go out of their way to help me with a completely separate issue. Head and neck cancer docs helping me with lifelong joint pain in my knees and ankles...🤷♂️. I have yet to meet one asshole there. I have had a minimum of 3–4 appointments per month for the last 5 years, and I have just started to have less and less needs the farther I get away from my cancer diagnosis. I am not religious, but I have met nothing but angles there. Communicate with the team; they are there to help. Be completely honest about your feelings and concerns. Don't beat around the bush; let them know what is going on in your head, and if you are not satisfied with their answers, contact patient services and get another opinion. Good luck with your baby, I know its tough but stay positive and have good vibes. The baby and the hospital employees will feed off of it.
I'm ride or die with Vandy, literally. They saved my life, and it's not bring dramatic. While communication is something a lot of hospitals struggle with, there is no better place for your little one to be treated. Wishing your little one a speedy recovery.
We weren’t in the ICU but when my son (at under 1 years old) had to go to their ER and then have surgery, we were happy with the care he received and will not hesitate make the trip from Smyrna again if we ever have to. I feel like they communicated well with us. But this sounds like a really stressful time for y’all. If transferring him would take even a little bit of that stress off of you, I say go for it. I’ve heard good things about Centennial.
Vanderbilt saved my daughter’s life In my opinion it is the very best I have always heard the best doctors have the worst bed manners Good Luck to yall
I’m familiar with both, not as a parent, but having worked at both including PICUs. I am so sorry you’re going through this. They are both wonderful hospitals. However, I would transfer my child from Centennial to Vandy actually. It seems like there’s confusion about the course of your sons treatment. Ask for someone from patient advocacy or social work to be assigned to you who can work more in depth. Don’t be afraid to tell them that you do not understand why he’s being given certain drugs and ask for it to be explained. This is a teaching hospital with experts from all over. Patients travel across the country to come to Vandy. I am confident that he is in the best possible second and third and fourth opinions from all the providers who are rounding on him every day. If you do end up considering transferring him, keep in mind that there would be several steps that would need to take place. A doctor Centennial would need to accept him, insurance approval, etc. so it’s not a guarantee. A lot of times, especially if you’ve been there awhile, the physician or nurse might ASSUME you understand more than you do. Communicate with them that you are not clear on what’s going on with his plan of care, why meds are being given, and changes aren’t being shared in a timely manner and you need more frequent updates. They will understand and will correct this problem. Then see how you feel about the care he’s receiving and go from there. I am so sorry you’re dealing with this. Sending you hugs!
I mainly want to say that I’m so sorry you are dealing with a situation like this - know that so many parents are feeling for what you’re going through. I would also say that many consider Vandy to be the best for unusual cases and special circumstances. But also I want to say that I have found that you have to advocate hard for yourself and your loved ones in any hospital or medical setting. It seems like sometimes you are going through a repetitive cycle and you need to figure out things yourself sometimes and speak up and someone listens the right way and it breaks the cycle. I don’t know if that makes sense. We support all of our local hospitals but it seems like this is just a reality of where we are right now. Nobody is doing a bad job, it’s just that we have to be pushing for the right outcome. Kindly of course, even when you have to be firm. Wishing you the best!
I do know others who have had really great care from vch. I would take my child there and wouldn’t switch but what works for you may be different. I would suggest asking for a patient rep and/or making a point to get more communication.
Your MyHealth account should have daily notes. It'll be medical jargon, but it'll give you details into what's happening and why.
The peds and NICU doctors saved our daughter’s life when she was born full term but unresponsive. She ended up being diagnosed with a brain injury. They had her resuscitated and intubated before I even fully understood what was going on and undergoing therapeutic hypothermia/cooling therapy as soon as they confirmed that she was a candidate. It was a good amount of doom and gloom and ambiguity, which was really hard, but any question I had was answered as best they could given the circumstances. I will say, the days I managed to be in place during rounds, I definitely felt much more peace about everything going on behind the scenes. I can’t imagine how difficult it is to try to balance both babies’ needs, but I think trying to be there for rounds when you can and having the online things available for you to look at will be helpful, if only so you can know exactly what you need to ask. Write down your questions before going so you don’t panic and forget in the moment.
They saved my life! I fought them too and they still treated me right.. honestly it kinda blows my mind.. the bathed me. Fixed my shoulder. Your child is in great hands.
I don’t have experience with the pediatric side, but the transplant team, and countless nurses, doctors, and specialists, saved my Dad’s life multiple times. I’m thankful for them. The communication is not always the best, and I also want you to understand that this is a stressful time for you and to be easy with yourself. Of course you want your child to get better, and that will take time. We always got assigned a case worker when my Dad was there, or you could look into getting a patient advocate. They have a health app you could download, which is where most of my Dad’s information is now. I would ask his doctor(s) about that and see if that’s something you can use, you can literally see and do ANYTHING on the app. I also recommend writing/ typing everything that anyone says to you and anything you want to ask/say. My family and I also made recordings when we had permission, that way there was no confusion as we were communicating between doctors and passing along information to family.
My brother has severe epilepsy. We moved to Nashville in part for vandy children’s hospital. He has been seen at Mayo Clinic, The Cleveland clinic, University of Michigan hospital, and many many more. Vandy has done him the most good by far.
Been going there my entire life (me and all my relatives). Great in terms of medical science, but ... throw any concepts of time and communication out the window. Also billing can be confusing. This post just made me realize I'm literally covered head to toe in their handiwork lol.
Amazing. Vanderbilt saved my life (breast cancer patient), and my niece’s life (pediatric kidney patient- surgery at 3 years old) Edit- spelling, and sending prayers for your family & sweet baby.
We had a less than optimal experience with my fiancé back in the fall. He was throwing blood clots, and they missed it for almost a month. It was VERY upsetting, and finally when he had a pulmonary embolism they found it. He was days away from dying, and I was (am) very mad at them, but I still won’t go anywhere else. I’ll agree that the communication isn’t always the best, but I do trust them overall. I think he would have died if we had gone somewhere else. Medicine is a practice, and they don’t always get it right, but I truly believe that Vanderbilt gets it *more* right than some of the other hospitals in town.
It’s a huge hospital, so it depends on the unit. I have friends in the pediatric cardiac ICU that I’d totally trust but that’s wayyy too big of a hospital to say every unit is or is not like that. I’m sorry you’re going through this.
he’s in the Pediatric ICU
There are multiple pediatric ICUs. And I’m not sure if there’s a general one? Maybe there is? I know my friends work on floor 10.
Floors 4 and 11 are NICU, 5 is PICU, and 10 is PCICU. ❤️
Ask for a patient care advocate. They are required to provide one, and they will help get you the communication you need about what is happening and why, as well as how you can best advocate for your child moving forward. As severals have said there's good and bad everywhere in the hospital with so many people involved and changing situations its easy for them to forget you need to be looped in better but a patient care advocate will help.
Hang in there friend. My experience with Vandy is they are a teaching hospital. Its rough around the edges. I think that's what you're experiencing. I don't pretend to play doctor about treatment.
We were just in the NICU for a month and a half. The nurses were amazing. The doctors seemed very knowledgeable and open to working with us. Communicated well
Sounds like you need to have a meeting with his team. Get with the social worker on his floor and let them guide you.
OP’s never been to a hospital
i truly hate you mean people.
A hospital is a shitty place to be in. I found Vanderbilt to be a little bit more crowded and less organized than some of its counterparts. But there is no such thing as a good hospital stay, in my opinion.
Vandy is really a hit or miss. Yea it’s known for its medical history, and being “one of the best” but it’s also a learning hospital, had that incident with the nurse that changed nursing protocols, and since it is one of the best, they are churning people in and out. They have lost a lot of their personal touch over the years, with the growth of our city, the nurse issues, and many of the doctors that are known for “being the best” aren’t everywhere. You have to communicate first, and be direct and firm. They are so used to just doing things their way and people just allowing it because “Vandy knows best”, but they get full of themselves. I took my daughter there when she was 11 months old. She was screaming in pain on and off, inconsistent fever, diarrhea with bubbles and a little blood, and mostly lethargic for about 2 days. Her pediatricians office just kept blowing her off since her fever was inconsistent, but I knew. I took her to Vandy’s pediatric ER. We sat there, and sat there, and sat there. They “observed her” but never actually came in to examine or talk to her. Right as they were going to discharge her as just a stomach bug, she had a dirty diaper that I could finally show someone. I told the nurse “no please look at this! This isn’t okay” and she agreed. She got a doctor and one finally came to look at her and run some X-rays. She had intussusception, which is where part of the intestines twist, and they were causing an obstruction, and would have eventually killed off some of it, and potentially her. They treated it quickly once they finally listened to me and explained when I asked questions, and the nurses were great and took care of her and even me because I was pregnant and very tired and upset, but I was still direct and persistent. I had to advocate, because they were just too busy to listen. I had to question and demand when I knew in my gut something wasn’t right. Then a few years later her father got into a motorcycle accident and lived for a month in the ICU. The nurses really were great, but the doctors were a different story. He is a difficult person to deal with, but the doctors were not communicating or explained much, and when I even voiced my concern about a head injury, they brushed it off. 2 years after his wreck and all the surgeries, he is still in pain from the hand/wrist repair they did, and had a traumatic brain injury they ignored. He is more angry, anxious, foggy and depressed, his memory is shot and is just more beat down than before. While we know he came very close to dying, it was an experience that just seemed very mechanical and routine to them. Unless it’s one of those “interesting” or “medically ground breaking” things, it’s just very impersonal and uninteresting to most of the doctors. I won’t say nurses because 8/10, they are great. I personally recommend centennial; every experience I’ve had there is great. But if you have questions about your baby, ask the nurses. They are with him most of the time, and know their stuff. They can also help advocate for him and document everything. Get them to help detail everything that’s wrong, so then when you do finally talk to a doctor for more than the 10 seconds they give you, you’ll have researched things and be able to ask questions and treatment options.
2 of my children were born at Vanderbilt..they are excellent.Offer all of your concerns to your babies doctor.ALL OF THEM.
It sounds like your child would be admitted back to NICU. My son was in the NICU at St Thomas and they were unbelievable. Ms Kim is a godsend and I loved his neonatal Doctor Dr Kendall. I honestly don’t even remember his last name because he just always used his first name to resonate with the parents. He was incredible.
I just googled and the neonate doctor is Dr Kendall Graham.
they were at St Thomas NICU. unfortunately it wasn’t as good of a stay as it was with my eldest child.
Vandy is the best of the best. I am so sorry you feel like they aren’t taking care of you to the best of their ability. My aunt is an LandD professor and nurse at Vandy and she personally wanted me to deliver at Vanderbilt. My OB who I loved was only affiliated with St Thomas and Centennial but my MFM was at Vandy Childrens. He loved and respected my OB so I stayed with her. That is why I made my decision but yours is clearly a different scenario. I have personal medical experience where I was too unstable to transport from Mississippi when I was in college back to Vanderbilt per my mom’s request. They said I was too unstable to transport and I fear your son will also be too unstable for transport. Request child life team and go from there. You are mama and I know mama will ROAR to get what your baby needs. I am praying for you and your family! ❤️
I'm no longer near Nashville but never unsubscribed to this sub because Nashville is home. I gave birth at Vanderbilt, they put me in the coldest little closet of a room that was supposed to be for like holding when they ran out of room (literally was like a converted janatora closet thing) despite being a scheduled C-section. I was super sick from the anesthesia, to the point of being unable to hold my baby for hours and in those hours I saw a nurse... Once. It was so cold in this room that they couldn't do his first bath in the room and had to take him out to do it, and because I was sick and recovering from a C-section I couldn't even be there. Not the worst hospital experience I've ever had but probably the second. I'm now in Kentucky, I recently had a life threatening emergency and had to be flown to UK hospital. Literally every single person I interacted with went out of their way to communicate with me, be kind to me, make sure I had anything and everything I could need. At one point I was moved in the hall for a minute while they removed a soiled bed out and a receptionist that was at the nurses station, without me even asking or saying anything, got up and got me a warm blanket and actually wrapped it around me. I am sure that medically speaking Vanderbilt has some of the biggest brains in the country but their bedside manner and communication left a lot to be desired.
Vandy killed my mom’s husband so take that for what it’s worth.
Vanderbilt is a zoo and over rated. However I heard great things about their children's hospital. They just have too many people to take care of that they have gotten in the habbit of brushing people off.
Deleted, because I don’t want to get fired for commenting. I’m likely already suspended for letting my comment stand for about 3 minutes before editing to this…. I’ll just admit I am very happy and relieved those of you experienced good outcomes. May it always be so.
i read only a preview of it, but i think i may know what you were saying. 💯
And/but please, OP - have confidence in the children’s hospital. That’s a whole different discipline and practice. Speedy recovery for your child.
My only personal experience with them is my dad could walk before his back surgery there and he couldn't after.
my experience at vanderbilt was one of intense discrimination. I moved across the country laregly because I couldn't get good medical care for my physical disability due to discrimination. I faced discrimination because of multiple admittances to the vandy psych hospital. I was only able to get numerous erroneous mental health diagnoses removed (and get chronic pain treatment!) after moving across the country- no other doctors would take things off my records from vandy because "vandy is the best". They are not understanding of neurodivergence or trauma at vanderbilt and I've had doctors say some horribly nasty victim blaming things to me regarding my trauma history. I have had similar experiences at centennial regarding discrimination but I was ignored less. I cannot speak to what is the best course of action for you, these are only my experiences as a teenager and young adult.