These child advocates are amazing. When I was a child in the 70s I had to have kidney surgery at Childrens Hospital and back then they just took you from your parents and held you down and scared the shit out of you. I can remember screaming at the top of my lungs for my mom.
RIP Zei 😭❤️. I followed your journey for a couple of months and I am just awestruck by the strength that you and your mother demonstrate. Your mom’s updates were very uplifting, and I thought that you were on the road to eventual recovery. However, I saw that you were struggling at home over the past week or so. And today, I saw that you passed away last night. Although I did not know you, I am saddened by the sudden loss of such a vibrant (and awesome) young lady. Fly high, Zei. ❤️🌈
My heart breaks for beautiful Zei she fought so hard I have never seen a more determined and inspirational young women I’m so utterly heartbroken for her and her family that this amazing angel is no longer with us RIP Zei 🦋💐💔💔💔🕊🕊🕊🕊🕊🕊
Although you are a complete stranger, Zei, you certainly feel more like a friend to me. As a former pediatric RN, your story touched me more profoundly that most. I hope your Mom has the honor of reading these comments, and hundreds more, to continue to remind her what a remarkable impact her beautiful daughter had on this world. Sadly, her life on earth was a little shorter than some, however she impacts those that are least expecting it..just like me. I'm not a child, however I am recovering from a 13hr gigantic operation just this past February. God must have known I needed to see your incredibly courageous story to motivate me to keep fighting until the end, exactly like you. I'm sure Zei's entire medical team grew very close to her and were deeply saddened by her passing. May this beautiful angel fly high and continue to watch over all the sick children around the world. God bless you Zei, you were definitely one of a kind!!
21 yrs ago Children's Mercy saved my grandson's life. He wasn't able to keep his formula down. He would always throw up right after his bottle. My daughter rushed him to the hospital in the small town of Lyons, Ks. It was discovered that he was born with Pilorick Stenoses. ( not spelt correctly). At 2 months he had to be life watched to Ks. City. He had surgery to save his life. Mercy Hospital treated him and today he's doing great. Thank you Children's Mercy
Aw, I'm glad they were able to help him, and he's going well today! My big sister also had pyloric stenosis, she had surgery as well. She had a few complications but eventually fully recovered too. She's still really short, but I think that's just my family genetics, not cus of her being slow to grow as a baby after throwing up so much milk
I live in Kansas city and I live near childrens mercy (my nom works in home care) and I've been there before. I had time have surgery because right after my tonsils were removed I got sick and vomited. I was in the hospital for a week. There was an event either cheerleaders and it was a lot if fun and the staff are amazing and sweet. truly amazing the work doctors do.
I respect these people so much they have to be so strong. I love kids but I know I could never work at a hospital like this. I would spend all day bawling my eyes
Holy crap that kid is amazing! That many days on ECHMO!?!! I remember the NICU team telling me if they had to use ECHMO with my kiddo that she couldn't be on it more than a few weeks if that and if more time was necessary, it was time to let her go. Thankfully she got through the infection that threatened her and she didn't need to even go on ECHMO but this story is crazy to me, how far things have come in just 16 years 😳. It is awesome and amazing.
So good to see a doctor who can do a spinal tap without the patient screaming in pain. Have see the worst procedures done by some doctors that I just cringed when I heard they were going to be doing it. Best wishes to all patients :)
@@lounakin i didn't mean it like that. i meant that people were wearing a mask when it is policy. the surgeons are following a policy. with what is happening now and all the anti-maskers, the government has made it policy to the population to wear a mask and still protests had popped up about not wearing a mask. some people just don't think about the well being of others, especially in the time of COVID-19
@@dylanrogers3723 I thought you were coming from an antimasker point of view and saying: we're not wearing it now because we were told to wear it... lol... That comment really depressed me! Pfew...
Kind of wish normal hospitals could be warm and colorful like the children's hospitals. When I had surgery I didn't want plan white walls and pictures, I wanted bright colored walls and a complementary coloring book and crayons waiting for me when I wake. But no, I woke up to my sister telling me what she named my appendix and my mom stealing the remote to watch Hallmark movies. Hope my older sister isn't dealing with that right now.
It cost them 950,000 to 1,900,000 dollars depending on if they spent 5,000 or 10,000 dollars per day. I feel really bad for them but at least Zei is in a better place now.
this is is why I dont understand why they dont have free healthcare for these types of things, like they do in australia (and other countries). its inhumane to put a family through that much financial pressure, and on top of that theyve lost a child.
Idk Nan Molla it’s a non-profit hospital which means it supposed to run off of donations. Depending on the family’s income they may not have to pay anything cause it’s considered a charity case.
Idk Nan Molla If the family has insurance, which I would be surprised if they didn’t, they should only have to pay their deductible, and while deductibles can be a bit high, a deductible doesn’t even come close to if they had to pay for everything out of pocket. I have had a progressive and degenerative disease since birth, causing countless hospitalizations and procedures. Some hospital stays (not even including surgery) have been upwards of a $1,000,000. With insurance, the individual deductible for our insurance was all we payed, and all we have ever had to pay. Heck, for me currently with having a portacath and needing infusions 5-7 days a week, just for that alone is close to $1,000 per week, none of which we receive bills for after reaching deductible (which as you can imagine, already happens quite easily and quickly towards the beginning of each year). Then the added factor of many children’s hospitals now covering the medical costs via donations for families who are unable to pay, thankfully, I highly doubt that Zei’s family had to pay anything close to what her medical care actually cost.
@@BhappyD Same. I don't understand why people outside of our country talk so much shit about our healthcare. I have a whole host of medical issues and just my immunosuppressant injections alone cost $130k+ per year (and that's the "reduced" rate with insurance). When I hit my deductible, which I do within the first week or two of the year (and never pay because I have manufacturer 'cash' cards that cover whatever insurance won't pay) I don't pay anything else out of pocket for the rest of the year. Even without the manufacturer cards I'd still rather pay my deductible than $130k a year. The only time insurance can get outrageous is if you have a high deductible (like $10k) plan but even then - if your hospitalizations are costing up to $1,000,000 then what's $10k?
I always love to see Child Life Specialists shown in such depth and with as much importance given to them, as the other team members. Sending love to all these kiddos and their families. ♥️
I'm surprised he was awake for the lumbar puncture. When my son had leukemia, they sedated him every time they did a lumbar puncture. And I can so relate to Peyton's family getting the news about his clean scans. I remember getting the call that said my son's bone marrow showed no evidence of leukemia. It's such an emotional feeling.
Wanting to become a doctor had its ups and downs but I am willing to do it if I am able to save lives, death is a horrible thing so live life at the fullest while you can, poor Zei could not for so long, rip Zei 🤍🕊
@@lovelyjanuaryIt may not be the primary point of telling these stories, but it is a very difficult and unfortunate reality to those of us in the privatized American healthcare system. It's one of the biggest reasons why we need to advocate for universal healthcare. Nobody should have to be bankrupt for life as a consequence of falling ill.
all these kids...i hate how such young kids have to go through just complete and udder hell. seeing that little boy get a cemo line into his tiny chest and seeing how much pain it brings him. He's only 10 years old and hes missing out on normal things ten year old boys should be doing, like riding bikes, playing in creeks and charging around playgrounds and doing dirt jumps. its not fair such young lives loose out on all that time.. and poor Zei....she didn't deserve to go through all that pain, all that sickness and loosing her life too soon, she will never get her drivers license, she will never graduate high school, she never got to go to prom or watch her little siblings grow up, she never got to find love, get married, or have her own children, no child should have to go through with all of this, rest in piece zei
You're right, and it's something that pediatric doctors are only beginning to realise. I've spent more of my childhood in hospital than at home. I didn't have a diagnosis til I was 15, and when I did, we found out that it was an ultra rare, untreatable terminal disease. All through my childhood, we knew my body was slowly shutting down, system by system, they just couldn't figure out why. They hoped that they could keep me alive long enough that medical technology could progress to where they could do DNA testing etc, with the hope that they'd find the disease I had, and a treatment for it. In some ways, I wish they hasn't tired so hard to keep me alive. The amount of medical PTSD I have is... a lot. I have technically *died* and been brought back multiple times. I have regular nightmares where I remember hearing my mum screaming my name, begging me to just breathe, begging me not to leave her, as they shove a tube down my throat without any medication because there's no time to sedate me. Then, hearing the nurses saying to get the defibrillation stickers on my chest because it was very likely that my heart was about to stop beating... I have so many 'triggers' that remind me of a specific trauma and sends me mentally spiralling or have intense flashbacks. It can happen even from dumb small things like, I can be sent into a panic attack just from hearing the intro to a specific TV show. That was the show that I watched during one of the surgeries I had. Usually, you'd be fully anaesthetised (asleep) during that surgery. During full anesthesia, they have to put you on a ventilator during surgery but my weak breathing meant that if I went on the ventilator, there was no chance that I'd ever be able to get off the ventilator to breathe on my own ever again (ironically, I'm on a ventilator 24/7 now cus my breathing muscles eventually totally failed). So they had to do the surgery with me wide awake, with only numbing injections and some anti anxiety meds (but not the heavy duty ones that can affect breathing). They couldn't even use any sedation or pain meds for the same reason of their side effect on breathing. I had to lay there, hearing all the cutting sounds, feeling all the pulling and pushing of my intestines, fully awake. They'd only know when a top up of the numbing injection was needed, when I'd scream out in pain because I suddenly felt whatever cut or snip they just did. It was an awful 4+ hours to live through, and watching that TV show the whole time did nearly nothing to distract me from having to be awake during a surgery that they'd never done on someone awake before. My body is barely holding on, recently I overheard one of the hospice nurses talking to her supervisor on the phone (she thought I was asleep) saying that she'd never seen a patient still alive, with so many tubes, catheters, meds/infusions, IVs, medical interventions as I have, not even in the ICU. I'm old enough now that I can have more of a say in my medical care. I made it clear that right now, quality of life is more important to me than quantity. I've lost 99% of the things I used to be able to do, lost so many friends from hospice or the hospital. My mental health has been absolutely ruined by all of this. And I'm not even an adult yet. In some twisted way, I'm semi glad I'm terminal because I can't imagine having to live a full long life, with the amount of scarring memories and mental trauma that I have. Sorry for this morbid rant, but it's a topic that's very impactful for me, as you can imagine
I hear people complain that it takes months or even longer to get into a specialist though. I'm in the US so strictly going off of what I see on some of my medical support groups im in for my daughter. I also hear them say that if they don't like a specialist or don't agree with them that they can't make the change without approval? I can simply get a 2nd opinion. I don't have to wait 6-8 months to get into a doctor for her etc. My daughter also goes to children's mercy and it's amazing.
Jenifer Clark the waiting times can be a little slow but that’s just because the system has been misused at times. The NHS is overworked and overstretched in places which means it can take longer to see a doc sometimes. The system is free, it’s equal for everyone. People pay through taxes so we’re on equal grounds. In England you have to pay for a prescription unless you get government money or it’s contraception. That’s the only thing you pay for but even then it’s about £8/9. Plus staff are friendly and kind. They work incredibly long hours which very little breaks. The system is flawed in places but overall it’s wonderful. The NHS is equal for everyone and people don’t have to worry about paying an absurd amount for treatments and hospitals appointments.
@@lydiep6814 ive seen shows with the doctors talking about the NHS and how they are struggling to keep new doctors even through their internship. So many are quitting due to being so overworked and understaffed. It wasn't too long ago. It was a documentary. My daughter is on SSI so her health insurance is free and most things are covered. There are some things I have to pay out of pocket like syringes (she's tube fed) and random things like the cooling vest she has. Some random tapes i use. Adhesive remover wipes Just little things.
Jenifer Clark I just think that paying for your own health and the health of family members is shocking, simply absurd. It’s a much more equal and fair system when people all pay together for each other like it is here. The NHS is flawed in places and the system but overall it’s a wonderful system. It’s fair, it’s free and it doesn’t impact on our work.
In the 80s I had encephalitis my lumbar puncture consisted of two large men grabbing me one twisting me into a pretzel and somebody else stabbing me with a needle in my spine I was given no sedation and no drugs I am still somewhat traumatized 25 years later and swore I would never have another one. It’s only now starting to fade but for years I could still remember every detail of that. Funny how times changed back then in the 80s there was no such thing as sedation for children for things like lumbar you just were held in place and you did it and you dealt with it and that was it but yeah I can I can still vaguely remember it
I'm in the UK & my 2nd daughter ( 4th child out of 7) & she has Cerable Paulsey she is 23 now & she has botox injections in her legs to help her walk, What the doctors do in the USA is amazing & the children are all heroes, all the parents are so proud of how strong their children are & I am too xx
Love the programme but for goodness sake either turn off the music or playing MUCH quieter, it is hard to understand what is being said when you have hearing difficulties and is totally unnecessary
The best medicine that Peyton could have gotten, was seeing his dad, having his dad talking about the family staying together, how cancer affected them all and seeing his dad cry.
That front porch light is pretty bright. You are going to attract every mosquito in a 50 mile radius. I think you are going to need a bigger bug zapper😎
It doesn't sound like it to me, her level of physical deterioration, especially her lungs bleeding etc is incredibly severe and I've never heard that happening in CFS. Even the worse case I've heard of was a deterioration over a very long time, not like her
i mean unfortunately so did Zei, and Ik the NHS is crap I'm sorry:( Im chronically ill and have heard a LOT from my chronically ill friends across the pond.
@@rileysmith7367 I'm so sorry, my tablet glitched out and it sent way too many versions of my half written comment! I deleted all the spam ones (35!!)I hope your notifications weren't overloaded by it. Here is the finished version of my comment though - Interestingly, I've heard the opposite. I have chronically ill/terminal friends from the US, and I'm from the UK. When we've spoken about our experiences, they've all said how they wish they had the NHS, and they have a lot more issues with their system vs what I do from the NHS. Examples like, I used to be tube fed (now am IV fed), and all of the tube feeds and equipment was provided for free. Whereas my US friends have to pay for their feed/formula, which is EXTREMELY expensive, especially if they need a particularly rare or specialised formula. They also have to pay to rent the feeding pump, which can be hundreds of dollars per year. They have to often fight insurance to pay for basic things like wheelchairs or medications, and even if insurance agrees and will cover some of it, they still have to pay a huge amount of the excess. They are in huge amounts of debt, from things like hospital stays and surgeries, then add on top the daily costs of having to buy syringes, formula, all their other medical supplies, and it's a lot. They often have to choose between things like paying the rent, or buying meds for that month. Many have also had terrible experiences with doctors who take advantage of them being chronically ill. Surgeons who tell them that they urgently need some surgery, which then leads to another surgery to add to the original, which then needs another to fix the first surgery, then next surgery to take out the hardware due to infection... It's a common story unfortunately. Whereas actually, with many of their conditions, surgery is something to be used as a last last resort, but those surgeons just see them as a cash cow, knowing that once they have surgery once, they'll end up needing more and more. In the UK, they would have been far more careful with surgery, and there's no financial incentive for surgeons to do more surgeries, so patients like that aren't at risk of being preyed upon in the same way. One big problem of the NHS vs US is waiting times. We often have long waits, especially to see specialists. That's one thing that the US is good for (as long as you have money/insurance of course), say you have some knee issue, you can see your primary care doctor, get the referral and see an ortho doc within a week or two. Though, many of my chronically ill US friends have said that they have actually experienced long wait times for the kind of specialists that they need, ones truly specialised in their conditions, not just a more generalised ortho doc for example. Or, they struggle to find a doc who understands their condition, so they have to spend a long time hopping between doctors til one actually has the knowledge needed to help them. In the UK, we have so much more supports for the disabled/ill in terms of benefits and government schemes. We even have things like motability, where you can get a fully adapted car (for example, if you can't use foot pedals and need hand controls, or need a wheelchair accessible van) for free (including insurance) or for a small cost if you want a fancier car upgrade. Many of my US friends are housebound because there's no way on earth that they could ever hope to find the money needed to buy the car adaptations they need, or buy the van and ramp modifications etc needed so they can have a vehicle that works for them and their condition. The UK motability scheme doesn't just give you 1 adapted car for the rest of your life, every 3 years you get a new car, or earlier if your needs change. Whereas I know one friend from Texas whose family has been saving up for 30 or more years for the wheelchair van they need, and they still don't have enough... And another friend was able to get the hand controls he needed, but by the time he could afford it, his disability progressed and those hand controls aren't enough, he can't lift his chair into the passenger seat anymore so he can't use his car independently. He has to wait years and years to save up again, but he can't use his car right now, so he can't work enough to be able to save up. The UK benefits system is far better than the US too. It can take some fighting to get it, but there's far more money available for the disabled here, enough to actually live off vs the US. My family has never had to go into debt because of my Disabilty. My siblings never had to raise each other, because we had carers and nurses who would look after me, meaning my parents were free to just be regular parents to us all. My family has never had to worry about what happens when they die either, which I know is often a big problem for families with a disabled sibling or child. Often, the siblings are expected to care for the child when the parents die, and the parents are left to care for their adult child even once they're far too old to be able to, even if their child has very significant needs. The US just doesn't have the same level of help available in terms of care givers or nurses. There are many different options for me once I'm an adult, in terms of me moving out and not being reliant on living with my parents forever. I'll be able to have full time caregivers, and could live in a group home or the county will help to find me a suitable adapted house for me and my caregiver(s) to live in, on my own (at no cost to my family) I could list even more, but I think you get the point. Yes, the NHS is overstretched, yes it has long wait times for specialists. Yes, it can be difficult to access things like benefits, or fight to get assessments done to quality for the carers you need. But in the US, they also have to fight to be given any kind of disability payments or benefits, and even if they do qualify (many many are turned down, more than in the UK), the money they are given to live off is far less than the UK equivalent, and they're not allowed more than a small amount of savings otherwise their disability payments get stopped. Add on top of that, the medical debt, the amount of stress and pressure that puts on the family/financial provider (I.e. Able bodied spouse), the US system is so much more stress and doesn't offer the same help and benefits to the disabled as the UK does. That's not even including all the other government schemes and help the UK has, like a motability car, help with university, all medical equipment provided for free such as wheelchairs, specialised desk chairs, mobility aids, hoists. The UK also has funds so houses can be adapted for free, for example making a downstairs living area with a disabled accessible bathroom and so on. Funds like access to work, which provides equipment or anything needed for the disabled to be able to work/work effectively or more comfortably (things like a standing desk, or a specialised wheelchair. I know someone who had a spinal cord injury and their main wheelchair didn't fit well round tight gaps in the hospital areas they worked in, so access to work funded a specialised wheelchair that was much smaller and could turn round on the spot, and it could also 'stand' up the person in it once their legs+hips are strapped in, so she could 'stand' up to access patients lying in their bed, reach all the things she needed to and so on) I know I went a bit off topic, but it's a subject that I feel really strongly about. I think the US gets the idea that the NHS is so terrible, because the British are very loud, kinda grumpy people who aren't afraid of complaining when we have issues with something. Whereas, I've noticed in the US, there's more of a mentality like 'the US is the best, no other country is as good as us', and they're not really aware of how things are outside of the US like in Europe, they just kinda assume/have been taught that ofc the US is better than there. So, because the brits are so vocal about issues they have with the NHS, and are so loud when demanding change, it looks like it's a lot worse than the US system, whereas actually it's just a culture difference in terms of the attitude towards complaining about things. When we've had long chats about it, and told each other how things really work in each of our countries, every single one of my US friends (and many others who are in my support groups/forums) have said that they would rather have the UK system than the US one, and that they were sure that many aspects of their quality of life would be so much better living in the UK. Yes, the NHS can be crap, but it also has some amazing aspects but no one goes on the news or goes on social media to talk about those good parts anywhere near as much as people do that to complain. It doesn't mean there's more bad parts that good, it just means complaints are far far far more visible than praise I'd rather have all of the supports, government schemes, Disabilty payments available in the UK, even if it means sometimes longer waits to see a doctor (there are also systems in place to see a doctor with no wait times if it's urgent, like suspected cancer), if it means none of the medical debt that I/my family would have in the US. My family would have suffered so much if we lived in the US. They would have suffered financially from the debt, my parents would have had to spend all their time caring for me and had to neglect my healthy siblings. They wouldn't have been able to have a car that could transport me, wouldn't have been able to have my own adapted space downstairs, no where near the same help from caregivers+nurses... It would have broken our family apart, I'm sure of it
@@alphaholloway then buddy needs to get out of the military while his son is undergoing treatment for a potentially fatal disease. or at the very least take a leave.
I feel rather sad for paytons brother. Seems like he just lives in the background. I didnt see no hugs from dad he literally ignored him. Sad when one kids sick but the other needs attention too.
I feel like we saw about 0.01% of their daily lives and the entire length of Peyton’s treatment so that seems a bit harsh to think that his brother isn’t being loved equally from only those quick moments featured. 🤷🏻♀️🥴
Father like son how old is your son HE did not change his clothes to go out to the hospital he need to change into a hospital gown what is his name this he have a he wearing a blue shirt and a black short and a orange sock on his what is icu stand for feet he not wearing no shoe seizure before how he been a day keep him in the hospital overnight more test day DID said when he can go home from the hospital what time is his surgery what kind of surgery disabled can not walk how long he been in the walker he have a wheelchair he seat in the wheelchair when he goes to school on the school bus day have a ramp on the school bus he wear a seat belt
Rest in peace Zei , you were such a warrior and your battle is fought. Sleep tight 👼
Awe Zei! She fought so damn hard! I'll never forget her! RIP
These child advocates are amazing. When I was a child in the 70s I had to have kidney surgery at Childrens Hospital and back then they just took you from your parents and held you down and scared the shit out of you. I can remember screaming at the top of my lungs for my mom.
RIP Zei 😭❤️. I followed your journey for a couple of months and I am just awestruck by the strength that you and your mother demonstrate.
Your mom’s updates were very uplifting, and I thought that you were on the road to eventual recovery. However, I saw that you were struggling at home over the past week or so.
And today, I saw that you passed away last night. Although I did not know you, I am saddened by the sudden loss of such a vibrant (and awesome) young lady.
Fly high, Zei. ❤️🌈
😭😭👉👈🙏🏥
How do you know she died?
My heart breaks for beautiful Zei she fought so hard I have never seen a more determined and inspirational young women I’m so utterly heartbroken for her and her family that this amazing angel is no longer with us RIP Zei 🦋💐💔💔💔🕊🕊🕊🕊🕊🕊
Although you are a complete stranger, Zei, you certainly feel more like a friend to me.
As a former pediatric RN, your story touched me more profoundly that most. I hope your Mom has the honor of reading these comments, and hundreds more, to continue to remind her what a remarkable impact her beautiful daughter had on this world. Sadly, her life on earth was a little shorter than some, however she impacts those that are least expecting it..just like me.
I'm not a child, however I am recovering from a 13hr gigantic operation just this past February. God must have known I needed to see your incredibly courageous story to motivate me to keep fighting until the end, exactly like you.
I'm sure Zei's entire medical team grew very close to her and were deeply saddened by her passing. May this beautiful angel fly high and continue to watch over all the sick children around the world. God bless you Zei, you were definitely one of a kind!!
oh my gosh she passed away 😭
Such a sweet comment, god bless you🥰
@@katie4335 yes unfortunately😭
The doctors, nurses, patients and their families are true heroes.
What a beautiful soul lost to the world. To Zei's family. I am so sorry for your loss.
Betty M. Amen
..... She didn't die.
@@lisajohnson675 Not while featured on this program but she passed away at home.
@@lisajohnson675 Zei Uwadia. She died. You can Google it. What a terrible loss for her family and friends. May she rest peacefully.
Did they ever say what caused this?
This is the hospital we use for my daughter. All of her specialists are amazing and the inpatient visits are above and beyond my expectations.
Peyton is awesome. How do you get a space party? You planet! 😂😂😂😂😂🤣🤣🤣🤣🤣
You all are beyond amazing for what you do for the families & kids at Children's Mercy
I’m so sorry for your loss
Is the pork bag or not
Jessica none Ummmm What?
@@bekahmedina3690 what?
So sorry for your loss
I really hope these children are all healed and live happy lives!
21 yrs ago Children's Mercy saved my grandson's life. He wasn't able to keep his formula down. He would always throw up right after his bottle. My daughter rushed him to the hospital in the small town of Lyons, Ks. It was discovered that he was born with Pilorick Stenoses. ( not spelt correctly).
At 2 months he had to be life watched to Ks. City. He had surgery to save his life.
Mercy Hospital treated him and today he's doing great. Thank you Children's Mercy
Aw, I'm glad they were able to help him, and he's going well today! My big sister also had pyloric stenosis, she had surgery as well. She had a few complications but eventually fully recovered too. She's still really short, but I think that's just my family genetics, not cus of her being slow to grow as a baby after throwing up so much milk
I live in Kansas city and I live near childrens mercy (my nom works in home care) and I've been there before. I had time have surgery because right after my tonsils were removed I got sick and vomited. I was in the hospital for a week. There was an event either cheerleaders and it was a lot if fun and the staff are amazing and sweet. truly amazing the work doctors do.
God bless these doctors, nurses, the patients and their families. I’m so excited for Peyton and his family!!
I respect these people so much they have to be so strong. I love kids but I know I could never work at a hospital like this. I would spend all day bawling my eyes
Holy crap that kid is amazing! That many days on ECHMO!?!! I remember the NICU team telling me if they had to use ECHMO with my kiddo that she couldn't be on it more than a few weeks if that and if more time was necessary, it was time to let her go. Thankfully she got through the infection that threatened her and she didn't need to even go on ECHMO but this story is crazy to me, how far things have come in just 16 years 😳. It is awesome and amazing.
So good to see a doctor who can do a spinal tap without the patient screaming in pain. Have see the worst procedures done by some doctors that I just cringed when I heard they were going to be doing it. Best wishes to all patients :)
Sorry for the loss of Zei,,, it's really sad 😥
Oh look at that... people wearing masks for hours on end and not complaining about it! How refreshing!
Yeah. Because they weren't told to. How ironic
@@dylanrogers3723 Do you think the surgeons weren't told to put on a mask?
@@lounakin i didn't mean it like that. i meant that people were wearing a mask when it is policy. the surgeons are following a policy. with what is happening now and all the anti-maskers, the government has made it policy to the population to wear a mask and still protests had popped up about not wearing a mask. some people just don't think about the well being of others, especially in the time of COVID-19
@@dylanrogers3723 I thought you were coming from an antimasker point of view and saying: we're not wearing it now because we were told to wear it... lol... That comment really depressed me! Pfew...
@@lounakin thats all good. thats what makes us human. mistakes. dont worry about it
having a trach is no fun I know Zai but you need it to breathe it helps a lot and it doesn’t hurt you at all
God bless this hospital.
I grew up going to CMH. They are so awesome there.
Kind of wish normal hospitals could be warm and colorful like the children's hospitals. When I had surgery I didn't want plan white walls and pictures, I wanted bright colored walls and a complementary coloring book and crayons waiting for me when I wake. But no, I woke up to my sister telling me what she named my appendix and my mom stealing the remote to watch Hallmark movies. Hope my older sister isn't dealing with that right now.
I can't even imagine the costs of ECMO for that many days.
It cost them 950,000 to 1,900,000 dollars depending on if they spent 5,000 or 10,000 dollars per day. I feel really bad for them but at least Zei is in a better place now.
this is is why I dont understand why they dont have free healthcare for these types of things, like they do in australia (and other countries). its inhumane to put a family through that much financial pressure, and on top of that theyve lost a child.
Idk Nan Molla it’s a non-profit hospital which means it supposed to run off of donations. Depending on the family’s income they may not have to pay anything cause it’s considered a charity case.
Idk Nan Molla If the family has insurance, which I would be surprised if they didn’t, they should only have to pay their deductible, and while deductibles can be a bit high, a deductible doesn’t even come close to if they had to pay for everything out of pocket. I have had a progressive and degenerative disease since birth, causing countless hospitalizations and procedures. Some hospital stays (not even including surgery) have been upwards of a $1,000,000. With insurance, the individual deductible for our insurance was all we payed, and all we have ever had to pay. Heck, for me currently with having a portacath and needing infusions 5-7 days a week, just for that alone is close to $1,000 per week, none of which we receive bills for after reaching deductible (which as you can imagine, already happens quite easily and quickly towards the beginning of each year). Then the added factor of many children’s hospitals now covering the medical costs via donations for families who are unable to pay, thankfully, I highly doubt that Zei’s family had to pay anything close to what her medical care actually cost.
@@BhappyD Same. I don't understand why people outside of our country talk so much shit about our healthcare. I have a whole host of medical issues and just my immunosuppressant injections alone cost $130k+ per year (and that's the "reduced" rate with insurance). When I hit my deductible, which I do within the first week or two of the year (and never pay because I have manufacturer 'cash' cards that cover whatever insurance won't pay) I don't pay anything else out of pocket for the rest of the year. Even without the manufacturer cards I'd still rather pay my deductible than $130k a year. The only time insurance can get outrageous is if you have a high deductible (like $10k) plan but even then - if your hospitalizations are costing up to $1,000,000 then what's $10k?
I always love to see Child Life Specialists shown in such depth and with as much importance given to them, as the other team members. Sending love to all these kiddos and their families. ♥️
I'm surprised he was awake for the lumbar puncture. When my son had leukemia, they sedated him every time they did a lumbar puncture. And I can so relate to Peyton's family getting the news about his clean scans. I remember getting the call that said my son's bone marrow showed no evidence of leukemia. It's such an emotional feeling.
Thank you for sharing your videos of your patients and their families!
Payton was such a positive soul I love it❤️
That is tougher than adults.
What makes Homo sapiens so different from other species on earth? This empathy, compassion, love, commitment for one loved person…
Wanting to become a doctor had its ups and downs but I am willing to do it if I am able to save lives, death is a horrible thing so live life at the fullest while you can, poor Zei could not for so long, rip Zei 🤍🕊
“Tacos!”! Lol Zei is a girl after my own heart!!!!!!!!!! 💕🌮 Rest In Peace
I Just cant imagine the costs of it all then once they pass away your left with horrendous grief and big bills to pay :( i just think that's awful :(
what an american problem
Emily it costs healthcare
that's what health insurance is for
I think you’re pretty much missing the entire point of a series like this, but ok.
@@lovelyjanuaryIt may not be the primary point of telling these stories, but it is a very difficult and unfortunate reality to those of us in the privatized American healthcare system. It's one of the biggest reasons why we need to advocate for universal healthcare. Nobody should have to be bankrupt for life as a consequence of falling ill.
love this hospital great staff and kids God bless always
This is amazing! Congratulations! R.I.P
all these kids...i hate how such young kids have to go through just complete and udder hell. seeing that little boy get a cemo line into his tiny chest and seeing how much pain it brings him. He's only 10 years old and hes missing out on normal things ten year old boys should be doing, like riding bikes, playing in creeks and charging around playgrounds and doing dirt jumps. its not fair such young lives loose out on all that time.. and poor Zei....she didn't deserve to go through all that pain, all that sickness and loosing her life too soon, she will never get her drivers license, she will never graduate high school, she never got to go to prom or watch her little siblings grow up, she never got to find love, get married, or have her own children, no child should have to go through with all of this, rest in piece zei
I'm not crying, You're crying!!! 😭😭
poor zei feel better ❤️🩹 fast recovery ❤️🩹
I love the name Zei
And i had a friend who was diagnosed with cancer and he passed away in my senior year
I have never seen such day to day bravery as these parents exhibit . It’s humbling to watch.
However I worry about PTSD when it’s over.
You're right, and it's something that pediatric doctors are only beginning to realise. I've spent more of my childhood in hospital than at home. I didn't have a diagnosis til I was 15, and when I did, we found out that it was an ultra rare, untreatable terminal disease. All through my childhood, we knew my body was slowly shutting down, system by system, they just couldn't figure out why. They hoped that they could keep me alive long enough that medical technology could progress to where they could do DNA testing etc, with the hope that they'd find the disease I had, and a treatment for it.
In some ways, I wish they hasn't tired so hard to keep me alive. The amount of medical PTSD I have is... a lot. I have technically *died* and been brought back multiple times. I have regular nightmares where I remember hearing my mum screaming my name, begging me to just breathe, begging me not to leave her, as they shove a tube down my throat without any medication because there's no time to sedate me. Then, hearing the nurses saying to get the defibrillation stickers on my chest because it was very likely that my heart was about to stop beating... I have so many 'triggers' that remind me of a specific trauma and sends me mentally spiralling or have intense flashbacks. It can happen even from dumb small things like, I can be sent into a panic attack just from hearing the intro to a specific TV show. That was the show that I watched during one of the surgeries I had. Usually, you'd be fully anaesthetised (asleep) during that surgery. During full anesthesia, they have to put you on a ventilator during surgery but my weak breathing meant that if I went on the ventilator, there was no chance that I'd ever be able to get off the ventilator to breathe on my own ever again (ironically, I'm on a ventilator 24/7 now cus my breathing muscles eventually totally failed). So they had to do the surgery with me wide awake, with only numbing injections and some anti anxiety meds (but not the heavy duty ones that can affect breathing). They couldn't even use any sedation or pain meds for the same reason of their side effect on breathing. I had to lay there, hearing all the cutting sounds, feeling all the pulling and pushing of my intestines, fully awake. They'd only know when a top up of the numbing injection was needed, when I'd scream out in pain because I suddenly felt whatever cut or snip they just did. It was an awful 4+ hours to live through, and watching that TV show the whole time did nearly nothing to distract me from having to be awake during a surgery that they'd never done on someone awake before.
My body is barely holding on, recently I overheard one of the hospice nurses talking to her supervisor on the phone (she thought I was asleep) saying that she'd never seen a patient still alive, with so many tubes, catheters, meds/infusions, IVs, medical interventions as I have, not even in the ICU. I'm old enough now that I can have more of a say in my medical care. I made it clear that right now, quality of life is more important to me than quantity. I've lost 99% of the things I used to be able to do, lost so many friends from hospice or the hospital. My mental health has been absolutely ruined by all of this. And I'm not even an adult yet. In some twisted way, I'm semi glad I'm terminal because I can't imagine having to live a full long life, with the amount of scarring memories and mental trauma that I have. Sorry for this morbid rant, but it's a topic that's very impactful for me, as you can imagine
This makes me so thankful for the NHS 💙
😬 same
I hear people complain that it takes months or even longer to get into a specialist though. I'm in the US so strictly going off of what I see on some of my medical support groups im in for my daughter.
I also hear them say that if they don't like a specialist or don't agree with them that they can't make the change without approval?
I can simply get a 2nd opinion. I don't have to wait 6-8 months to get into a doctor for her etc.
My daughter also goes to children's mercy and it's amazing.
Jenifer Clark the waiting times can be a little slow but that’s just because the system has been misused at times. The NHS is overworked and overstretched in places which means it can take longer to see a doc sometimes.
The system is free, it’s equal for everyone. People pay through taxes so we’re on equal grounds. In England you have to pay for a prescription unless you get government money or it’s contraception. That’s the only thing you pay for but even then it’s about £8/9.
Plus staff are friendly and kind. They work incredibly long hours which very little breaks.
The system is flawed in places but overall it’s wonderful. The NHS is equal for everyone and people don’t have to worry about paying an absurd amount for treatments and hospitals appointments.
@@lydiep6814 ive seen shows with the doctors talking about the NHS and how they are struggling to keep new doctors even through their internship. So many are quitting due to being so overworked and understaffed.
It wasn't too long ago. It was a documentary.
My daughter is on SSI so her health insurance is free and most things are covered. There are some things I have to pay out of pocket like syringes (she's tube fed) and random things like the cooling vest she has. Some random tapes i use. Adhesive remover wipes
Just little things.
Jenifer Clark I just think that paying for your own health and the health of family members is shocking, simply absurd. It’s a much more equal and fair system when people all pay together for each other like it is here.
The NHS is flawed in places and the system but overall it’s a wonderful system. It’s fair, it’s free and it doesn’t impact on our work.
Rest in peace to zei :(
😭
How did she die?
In the 80s I had encephalitis my lumbar puncture consisted of two large men grabbing me one twisting me into a pretzel and somebody else stabbing me with a needle in my spine I was given no sedation and no drugs I am still somewhat traumatized 25 years later and swore I would never have another one. It’s only now starting to fade but for years I could still remember every detail of that. Funny how times changed back then in the 80s there was no such thing as sedation for children for things like lumbar you just were held in place and you did it and you dealt with it and that was it but yeah I can I can still vaguely remember it
I immediatly fell in love with Martin❤
poor Zei I hope she feels better
I’m sending beautiful 😻 prayers to the boys to feel better ❤️🩹 and I’m sending beautiful prayers to beautiful Zei
She was so concident to walk connected to ecmo. If I was her I would be scared to move my head
Amazing
I'm in the UK & my 2nd daughter ( 4th child out of 7) & she has Cerable Paulsey she is 23 now & she has botox injections in her legs to help her walk,
What the doctors do in the USA is amazing & the children are all heroes, all the parents are so proud of how strong their children are & I am too xx
Megans nametag with the trans and gay pride flags what a queen 😔❤
Love the programme but for goodness sake either turn off the music or playing MUCH quieter, it is hard to understand what is being said when you have hearing difficulties and is totally unnecessary
It's kind of eerie to watch Martin's surgery when my son with CP had one of the same surgeries (the one with the saw). Yikes!
I was in the picu for the flu and I almost died
I have Cerebral Palsy as well. It is also known as cp
Me too. Its very mild. I used to wear braces.
god bless him.
May you rest easy Zei-chan
The best medicine that Peyton could have gotten, was seeing his dad, having his dad talking about the family staying together, how cancer affected them all and seeing his dad cry.
You can fight that cancer Payton!!!❤️💙
How did I get... Here
❤
That front porch light is pretty bright. You are going to attract every mosquito in a 50 mile radius. I think you are going to need a bigger bug zapper😎
Inside pediatric s.. prescription..episode 3..the brothers Grimm..🧙♀️💤💤..🍼..you have defeated death..🌹
this feels like a really long commercial making it look like a documentary
I think your username is pretty spot on accurate for that comment 🥺🙄
@@lovelyjanuaryomg why yre you so but hurt? lmao
Дети,всего мира неболейте,Никогда,очень жалко и детей и их родителей!
mmmm 😋 Zei is the water 💧 and the taco 🌮 yummy 😋
For those of you who want more detail on Zei's death:
www.cnn.com/2019/02/14/health/zei-uwadia-life-support-death/index.html
My nephew goes to this hospital once a month cuz hes got a disease that needs monitoring
I can tell Zei doesn’t feel good
I wonder if Zay had severe ME/CFS?
It doesn't sound like it to me, her level of physical deterioration, especially her lungs bleeding etc is incredibly severe and I've never heard that happening in CFS. Even the worse case I've heard of was a deterioration over a very long time, not like her
No, she had a severe reaction, damaging her lungs from Bactrim. It is linked on here in the comments.
lord help zei...
In the uk the nhs won’t pay for ECMO machines, think of the thousands of people who have died because of this
i mean unfortunately so did Zei, and Ik the NHS is crap I'm sorry:( Im chronically ill and have heard a LOT from my chronically ill friends across the pond.
That's not true, there's 6 NHS hospitals in the UK that have ECMO machines
@@rileysmith7367 I'm so sorry, my tablet glitched out and it sent way too many versions of my half written comment! I deleted all the spam ones (35!!)I hope your notifications weren't overloaded by it. Here is the finished version of my comment though -
Interestingly, I've heard the opposite. I have chronically ill/terminal friends from the US, and I'm from the UK. When we've spoken about our experiences, they've all said how they wish they had the NHS, and they have a lot more issues with their system vs what I do from the NHS. Examples like, I used to be tube fed (now am IV fed), and all of the tube feeds and equipment was provided for free. Whereas my US friends have to pay for their feed/formula, which is EXTREMELY expensive, especially if they need a particularly rare or specialised formula. They also have to pay to rent the feeding pump, which can be hundreds of dollars per year. They have to often fight insurance to pay for basic things like wheelchairs or medications, and even if insurance agrees and will cover some of it, they still have to pay a huge amount of the excess. They are in huge amounts of debt, from things like hospital stays and surgeries, then add on top the daily costs of having to buy syringes, formula, all their other medical supplies, and it's a lot. They often have to choose between things like paying the rent, or buying meds for that month. Many have also had terrible experiences with doctors who take advantage of them being chronically ill. Surgeons who tell them that they urgently need some surgery, which then leads to another surgery to add to the original, which then needs another to fix the first surgery, then next surgery to take out the hardware due to infection... It's a common story unfortunately. Whereas actually, with many of their conditions, surgery is something to be used as a last last resort, but those surgeons just see them as a cash cow, knowing that once they have surgery once, they'll end up needing more and more. In the UK, they would have been far more careful with surgery, and there's no financial incentive for surgeons to do more surgeries, so patients like that aren't at risk of being preyed upon in the same way.
One big problem of the NHS vs US is waiting times. We often have long waits, especially to see specialists. That's one thing that the US is good for (as long as you have money/insurance of course), say you have some knee issue, you can see your primary care doctor, get the referral and see an ortho doc within a week or two. Though, many of my chronically ill US friends have said that they have actually experienced long wait times for the kind of specialists that they need, ones truly specialised in their conditions, not just a more generalised ortho doc for example. Or, they struggle to find a doc who understands their condition, so they have to spend a long time hopping between doctors til one actually has the knowledge needed to help them.
In the UK, we have so much more supports for the disabled/ill in terms of benefits and government schemes. We even have things like motability, where you can get a fully adapted car (for example, if you can't use foot pedals and need hand controls, or need a wheelchair accessible van) for free (including insurance) or for a small cost if you want a fancier car upgrade. Many of my US friends are housebound because there's no way on earth that they could ever hope to find the money needed to buy the car adaptations they need, or buy the van and ramp modifications etc needed so they can have a vehicle that works for them and their condition. The UK motability scheme doesn't just give you 1 adapted car for the rest of your life, every 3 years you get a new car, or earlier if your needs change. Whereas I know one friend from Texas whose family has been saving up for 30 or more years for the wheelchair van they need, and they still don't have enough... And another friend was able to get the hand controls he needed, but by the time he could afford it, his disability progressed and those hand controls aren't enough, he can't lift his chair into the passenger seat anymore so he can't use his car independently. He has to wait years and years to save up again, but he can't use his car right now, so he can't work enough to be able to save up.
The UK benefits system is far better than the US too. It can take some fighting to get it, but there's far more money available for the disabled here, enough to actually live off vs the US.
My family has never had to go into debt because of my Disabilty. My siblings never had to raise each other, because we had carers and nurses who would look after me, meaning my parents were free to just be regular parents to us all. My family has never had to worry about what happens when they die either, which I know is often a big problem for families with a disabled sibling or child. Often, the siblings are expected to care for the child when the parents die, and the parents are left to care for their adult child even once they're far too old to be able to, even if their child has very significant needs. The US just doesn't have the same level of help available in terms of care givers or nurses. There are many different options for me once I'm an adult, in terms of me moving out and not being reliant on living with my parents forever. I'll be able to have full time caregivers, and could live in a group home or the county will help to find me a suitable adapted house for me and my caregiver(s) to live in, on my own (at no cost to my family)
I could list even more, but I think you get the point. Yes, the NHS is overstretched, yes it has long wait times for specialists. Yes, it can be difficult to access things like benefits, or fight to get assessments done to quality for the carers you need. But in the US, they also have to fight to be given any kind of disability payments or benefits, and even if they do qualify (many many are turned down, more than in the UK), the money they are given to live off is far less than the UK equivalent, and they're not allowed more than a small amount of savings otherwise their disability payments get stopped. Add on top of that, the medical debt, the amount of stress and pressure that puts on the family/financial provider (I.e. Able bodied spouse), the US system is so much more stress and doesn't offer the same help and benefits to the disabled as the UK does. That's not even including all the other government schemes and help the UK has, like a motability car, help with university, all medical equipment provided for free such as wheelchairs, specialised desk chairs, mobility aids, hoists. The UK also has funds so houses can be adapted for free, for example making a downstairs living area with a disabled accessible bathroom and so on. Funds like access to work, which provides equipment or anything needed for the disabled to be able to work/work effectively or more comfortably (things like a standing desk, or a specialised wheelchair. I know someone who had a spinal cord injury and their main wheelchair didn't fit well round tight gaps in the hospital areas they worked in, so access to work funded a specialised wheelchair that was much smaller and could turn round on the spot, and it could also 'stand' up the person in it once their legs+hips are strapped in, so she could 'stand' up to access patients lying in their bed, reach all the things she needed to and so on)
I know I went a bit off topic, but it's a subject that I feel really strongly about. I think the US gets the idea that the NHS is so terrible, because the British are very loud, kinda grumpy people who aren't afraid of complaining when we have issues with something. Whereas, I've noticed in the US, there's more of a mentality like 'the US is the best, no other country is as good as us', and they're not really aware of how things are outside of the US like in Europe, they just kinda assume/have been taught that ofc the US is better than there. So, because the brits are so vocal about issues they have with the NHS, and are so loud when demanding change, it looks like it's a lot worse than the US system, whereas actually it's just a culture difference in terms of the attitude towards complaining about things.
When we've had long chats about it, and told each other how things really work in each of our countries, every single one of my US friends (and many others who are in my support groups/forums) have said that they would rather have the UK system than the US one, and that they were sure that many aspects of their quality of life would be so much better living in the UK. Yes, the NHS can be crap, but it also has some amazing aspects but no one goes on the news or goes on social media to talk about those good parts anywhere near as much as people do that to complain. It doesn't mean there's more bad parts that good, it just means complaints are far far far more visible than praise
I'd rather have all of the supports, government schemes, Disabilty payments available in the UK, even if it means sometimes longer waits to see a doctor (there are also systems in place to see a doctor with no wait times if it's urgent, like suspected cancer), if it means none of the medical debt that I/my family would have in the US. My family would have suffered so much if we lived in the US. They would have suffered financially from the debt, my parents would have had to spend all their time caring for me and had to neglect my healthy siblings. They wouldn't have been able to have a car that could transport me, wouldn't have been able to have my own adapted space downstairs, no where near the same help from caregivers+nurses... It would have broken our family apart, I'm sure of it
Absolutely not true.
Be good if military dude could stay in town while his son is fighting for his life.
karen segal not how the military works buddy. Please educate yourself before posting unnecessary comments
@@alphaholloway then buddy needs to get out of the military while his son is undergoing treatment for a potentially fatal disease. or at the very least take a leave.
karen segal they need the money to pay for the treatment and stuff, the mum probably doesn’t work
What happened to Eps. 5 & 6 from Season 2? I love this show.
how sad
혼수상태 이네요
Rip ?
Peyton has No hair 😢😢😢😢
I feel rather sad for paytons brother. Seems like he just lives in the background. I didnt see no hugs from dad he literally ignored him. Sad when one kids sick but the other needs attention too.
I feel like we saw about 0.01% of their daily lives and the entire length of Peyton’s treatment so that seems a bit harsh to think that his brother isn’t being loved equally from only those quick moments featured. 🤷🏻♀️🥴
Hi
Did Zai possibly have severe complains of Covid-19?
Meghan Shalley this was over a year ago
She had a clear diagnosis from one of the top hospitals. The answer is 'No.' There are other diseases and illnesses.
She died before covid-19 was a thing
Meghan Shalley obviously not. Covid-19 wasn’t in America. Also she had severely weak lungs caused by something else
She died from a reaction to the antibiotic called bactrim. She had a UTI, they gave her bactrim and it set off this horrific chain of events
♿♿👉👈🙏🏥
🤔🤔😭😢👉👉👈
The expensive clam meteorologically bounce because forehead yearly crack in a befitting secure. breezy, glistening glorious improvement
Father like son how old is your son HE did not change his clothes to go out to the hospital he need to change into a hospital gown what is his name this he have a he wearing a blue shirt and a black short and a orange sock on his what is icu stand for feet he not wearing no shoe seizure before how he been a day keep him in the hospital overnight more test day DID said when he can go home from the hospital what time is his surgery what kind of surgery disabled can not walk how long he been in the walker he have a wheelchair he seat in the wheelchair when he goes to school on the school bus day have a ramp on the school bus he wear a seat belt
🤔
What?
What?
Your comment really makes no sense. Take a breath, use pronunciation, and you can get your point across clearly
@@blitzen5038bots.
trump 2020
zei feel better ❤️🩹
feel better ❤️🩹 zei sweet girl 🍉🍉🍉😘😘😘😍😍😍🍀🍀🍀🦋🦋🦋🦄🦄🦄🐥🐥🐥🐣🐣🐣🦋🦋🦋🪼🪼🪼🦋🦋🦋🌸🌸🌸🌺🌺🌺🪷🪷🪷🪻🪻🪻🌻🌻🌻🌹🌹🌹🌷🌷🌷💐💐💐🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈⭐️⭐️⭐️🌟🌟🌟⭐️⭐️✨✨✨❄️❄️❄️☀️☀️☀️🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈☀️☀️☀️☀️🌸🌸🌸
혼수상태 이네요