- Joined
- Jan 17, 2020
Jesus if you want to take care of genetic fuckups why not just get a pug or a chihuahua, at least they're mostly autonomous as far as dogs go. Surely far moreso than any subject of this thread.
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Take back what I said about Kelly at least not going on about her potato shitting unlike Gwen. Gross.Getting into moms blog here's a few early takeaways-
Kelly believed Kayli was actually potty training
Until they finally realized it was a result of her fucked up anatomy.
-All links are archived in the link at the end-
Updates: Potty Training, Ketogenic Diet, Surgery in the morning
A blog about Kayli Whistler, who was born with Trisomy 18 (Edward's Syndrome).trisomy18.blogspot.com
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Summary of Kayli's current medical challenges
A blog about Kayli Whistler, who was born with Trisomy 18 (Edward's Syndrome).trisomy18.blogspot.com
All of this and more are archived at: https://web.archive.org/web/20190803023745/http://trisomy18.blogspot.com/
There are multiple examples of mom being a tyrant to doctors and nurses, constantly lording over them that she knows best for her tater.
So she can use her stander but it's pointless Im waiting for the She will walking we didn't even turn it onAlso, why the fuck did she get surgery to correct club feet if she can't even walk?
Because looks are important for her little tater.Also, why the fuck did she get surgery to correct club feet if she can't even walk?
Kayli was rushed by ambulance to the hospital today, because after 2 newly prescribed supplemental potassium meds were given, her heart rate accelerated to more than 200 bpm and them dropped to as low as 38 bpm (beats per minute) while in the ambulance. She was unresponsive, yet her whole body twitched uncontrollably. Once at the hospital, emergency meds were given and Kayli was not responding. It was not looking good, and the paddles were pulled out. There was nothing stable about Kayli's condition, and everyone's face showed the grim reality that Kayli was not going to pull through this. The team tried the emergency medication a second time, but it still wasn't affecting her status. Her heart rate was quickly approaching 300 bpm (beats per minute). As it climbed in the high 280's, I asked to have a moment with her, and I put my lips to her ear. As my tears fell on her face, for the first time in her life, I begged my daughter to stay with me. I told her I was not ready for her to go yet. I told her that I know it's selfish of me to ask, but I needed her to stay with me. While talking to Kayli, her heart rate started dropping. Even with all the frantic exclamations throughout the room, there seemed to be a break in scurried shuffling of feet, as I could hear sighs of relief swell in the air. Kayli was not out of the woods, but there was a glimmer of hope left. Kayli was now trying to fight whatever it was that threatened her life. The dr came in the room to whisper the blood results to fellow dr's... "her Potassium level..." I felt my heart jam in my throat. "...is at 8". Because of the critically low Potassium level yesterday, I knew immediately that an 8 was high. I asked the dr how bad the 8 was....what does this number mean? What can we do?!! I was shocked to hear the words that I had heard so many times because of Kayli's diagnosis, but never did I think I'd hear them now. "Her level is at 8... which is incompatible with life". Incompatible with life.... damn those 3 words! This time not to describe Kayli, but to describe the new found condition she was in. The dr went on to say nobody can survive with such high Potassium levels. It is a fatal condition even at a lesser number. She has fragile heart conditions, and yet her heart is withstanding this fatally high level that directly affects even the most fit of hearts. As the room of people dealt with the shock and grim prognosis, the dr ordered emergency meds to try to back out of the extremely high number. Over time, the Flight for Life was called, and Kayli's ride was being prepared to take her to another hospital. She was far from stable, but we needed to get her from point A to point B if she was to have any chance of surviving this. Kayli's next ride was uneventful, in fact, her stats seemed to get better during the short trip. Before we left, I asked for records of her stats, and a cd copy of her chest xray. Once at the new hospital, I looked at her medical records, and found that Kayli's condition was actually worse than they thought it was. Her Potassium level was more than 8! I was told others have passed away with levels in the low 7's and yet Kayli's level was at 8.2! Her blood sugar level was 227! After much work, I now sit at her bedside, where Kayli is nearly stable now. She has some body twitches that did not go away with Ativan, but she is now finally sleeping. We are very happy to see her tiny body finally resting and hopefully recovering. The nurses and dr's agree....if you say nobody can survive it, you have not met Kayli yet. Against all odds and scientific belief, Kayli has once again survived the impossible! She had a Potassium level of 8.2, and a heart rate close to 300 bpm and survived! SHE DIDN'T EVEN GO INTO CARDIAC ARREST!!! We have not yet cancelled Kayli's Celebration of Life, because with Kayli and God, we never know what tomorrow will hold. I hope to update you with wonderful news later this morning... until then, Good night, and God Bless!
6 years ago today, we followed a dietitian's (and neurologist approved) order to give Potassium supplements to Kayli. The supplements ended up being a lethal dose. Whereas normal Potassium range is between 3.5 and 5, and 7 being an often deadly range... Kayli's level was at 8.2. Kayli was given such a high dose via her stomach that within seconds she was having convulsions and had diarrhea for 1/2 hour straight. We rushed her to the nearest hospital. Even before the test results came in, the Cardiologist refused to come in the room and wouldn't order the life saving measures. The nurse at Kayli's side put sticker paddles on her chest while yelling at the Cardiologist just outside the room to give her orders to treat the life threatening condition. The dr ignored the nurse and refused to give orders or help. I asked the nurse what was happening. Why was the dr refusing to help?! She knew, but didn't have time to explain. Kayli's condition was serious and caused by the Potassium supplements I knew, but I had no idea what Kayli was going through. I later learned that normally Potassium is given slowly because it feels like your blood is on fire. With the high doses she was given, I now know Kayli felt like her blood was burning and her insides were on fire. She tried to overcome the lethal dose. It was too much pain to bare, yet she somehow continued to fight. Her heart rate reached over 300 and bounced back and forth between 300's and the 30's (normal was 120). Kayli was in V-tach (the top part of the heart stops beating and the bottom just quivers). She was in V-tach for an hour! How was blood getting to her organs? To her head?! The nurse answered, "She's about to go into cardiac arrest. We are loosing her!" With the lab results in, the ER pediatrician and ER Intensivist whispered to each other and I heard "Potassium". The day before, during routine Pre-OP lab work for an upcoming spine surgery, Kayli's Potassium was dangerously low at 1.7. She was in the ER the night before, getting a "K-rider", a Potassium IV, to bring her critically low Potassium levels up. I knew a little about the electrolyte, Potassium, levels because being on such low caloric intake in the Ketogenic Diet seemed to leave her Potassium levels too low. I walked over to the 2 whispering dr's and asked that they tell me what was happening. Together, they claimed her condition "incompatible with life" and said there was no reason to treat because there was ZERO chance of survival at a Potassium level of 8. I claimed, "She has Trisomy 18, I've already heard incompatible with life and it isn't true for her!" Do something because she's still fighting! Help her!" The ER Intensivist ordered Biocarbinate and something else. Kayli didn't respond...I could feel her spirit was no longer in her body. I asked the nurse to give me a moment with Kayli. Defeated, the dr's did not wish to try any other life saving measures because she wasn't responding to the drugs... it's just too much for her body. I knew Kayli's spirit was gone, but I somehow knew that she thought once the pain was gone she could come back to her body. I spoke to Kayli's body and begged her spirit to come back just long enough to see that her body was not going to be here when she came back. I wanted her to know she needed to make a choice NOW. Either she comes back and endures the pain and stays in her body, or she says goodbye to her body and goes to heaven with Jesus. At my last word spoken to her, I could feel her spirit come back. Not all of it, but about 10%. I told the nurse to try again now. .....Kayli started responding to the drugs. I spoke to her more. "Thank you, Sweet Pea, for listening to mommy. You can go now that you understand what's happening to your body, or you can stay and fight. I'm so proud of you either way. I love you Kayli!" Kayli continued to respond. She wasn't stable, but unstably stable enough to be lifelined to another hospital where her Neurologist was. The following day, she continued to get better. Kayli was back in our world, but it was completely different. She had amnesia. She was so scared. When I spoke, she screamed of fear. When I went to hold her, she screamed. I lost my daughter again. This time it was emotionally. The only thing I knew to do as her mom was to comfort her, yet now my love brought her fear. We cried together, until I walked to the other side of the room... then I cried alone
Same reason why all her kids have rare, untreatable tumors and shit that magically healNot sure why she thinks anyone would buy the magical healing of a cleft.
Yea I wonder if they have had to make plans for mom dies and the other kids just want her put in a nursing home and wonder who lost their bedroom for her therapy room. What did surprise me was her therapy stuff seems correct for her True level of funcationing unlike the hooligansSame reason why all her kids have rare, untreatable tumors and shit that magically healon their ownFROM THE POWER OF JESUS!!!!!111 Money/free shit, and attention, lots of attention. Her other kids in a way dodged a bullet by not becoming the next Gypsy Rose Blanchard. Instead they're just intensely ignored in favor of an intensely fucked younger sister.
ig: lilyslittlelungs
this baby isn’t exactly a “tard” but this mom PISSES me off. she goes on and on in just about every other post how much PAIN and trauma her baby had to go through just to keep her alive. one post she was doped up with morphine and fentanyl which she needed around the clock, because at only a few months old would try to RIP her tubing out because she was in pain. apparently the kid lived completely doped up for a long time, and the mom doesn’t let u forget it. someone asked a question how she decided to let her daughter live in such pain, and she rudely replied, which i’ve seen her do to quite a few people, especially other moms in similar situations looking for a bit of support or kind words from someone who has gone through it and she will barely reply with just a thank you, if that. she also loves to hashtag her posts with tons of little trophy tags, making it like a special badge, the more fucked up her kid is the more tags she can slap on there and show off, like it’s a fucking good thing??? searching some of those tags on ig, u find a lotttttttt of these moms, it’s a black hole. i can’t imagine having a baby hauling around all that damn tubing every single day. that is no way to live.
initially clicked agree, but then thought....i wonder if her mouth being gaped open and head being tilted back 24/7 might have pushed the edges of the cleft closer together over time. that isn't the same thing as the palate healing, but it would superficially appear the same.Fistulas formed after palate surgery for clefts can sometimes, very rarely, close on their own... but a cleft of any kind without surgical intervention cannot heal by itself. They literally can't, it's physically impossible because there is a gap in the palate that needs to be stitched together to correct the defect. It doesn't just grow together and fix itself magically. Not sure why she thinks anyone would buy the magical healing of a cleft.
This is shallow but I wish they would do something to close Kayli's mouth, like give her a helmet with a chin strap. It can't be good for her teeth or gums for her mouth to be open all day, and as many people have noted it makes her look like she's perpetually screaming in agony. There's a reason why undertakers used to tie up a dead person's jaw before a viewing: people don't want to look at a screaming corpse.
Microcephaly yeah totally possible to have a personality and even have a fairly normal life, sometimes, depending on the severity.
anencephaly? no. flat out no.There’s nothing there to develop a personality.
Yeah anencephaly is one of those things where there is no hope. You're not getting even a disabled or retarded kid, you're getting a corpse with a gaping hole where its skull should be. Thinking women should be forced to carry something like that to term is some Taliban shit.Power level but fuck it: Have a relative who carried anencephalic twins to term because 1970s and Catholic and Midwest US. I can’t even imagine. She didn’t have the choice then. The fact that this could even be a possibility makes me pro choice to the end.
In the natural course of events, wouldn't such a child die soon after birth, anyway? Do they even have a nursing reflex? It seems like to whatever extent God is involved, he made it a self solving problem.Yeah anencephaly is one of those things where there is no hope. You're not getting even a disabled or exceptional kid, you're getting a corpse with a gaping hole where its skull should be. Thinking women should be forced to carry something like that to term is some Taliban shit.
I've noticed that a lot of these kids who have their mouths open all the time have really messed up teeth. It's like the shape of their mouth changes from being open and the teeth don't quite fit in there.https://youtu.be/1zLt6iUzcUI have we discussed this hideous blasphemy??? her MOUTH AND THEM DAMN TEETH!!!!
looks like the monster tries to suckle when anything hits her mouth like the one and only lola
Elijah or what his name was lived be 8. Jaxon lived to six. Granted they also both had skin covering the tops of their heads so that's probably got something to do with it.In the natural course of events, wouldn't such a child die soon after birth, anyway? Do they even have a nursing reflex? It seems like to whatever extent God is involved, he made it a self solving problem.