Hello my fellow readers to day i would like to speak on the topic of a remote close friend of mine. his name is Avery. Avery and i met threw a YouTube vloger by the name of kreed i use to follow kreeds YouTube vlogs on a daily and would watch each one as soon as they came out and i followed his Facebook page. but when kreed met a person by the name of Avery who was sick at the time and was in the hospital i started to follow Avery's page. i have been one of Avery's online friends for as long as i can remember witch in real life is about 1 or 1 and a half years but Avery to has been someone that i tend to me amazed by and is someone that i tend to follow i love waking up and reading his website and reading his Facebook page he is someone that has a lot of strength on the inside and i try also inspire my students to be like him i show my students his page and the always love to read the updates he post he is latterly my number one hero i look up to Avery like he is one of my family members. Avery you have the power to do just about anything you please keep it up man you do not know who much faith people have in you and how much of a impact you have on people. Avery has been someone that i tend to talk about at public conferences and public events that i go to and speak to people about kids and adults with special needs and how they are gods angels.
Hello my fellow readers. i'm sorry i have been totally absent on here and not keeping to my word of not trying to put up a post everyday but i'm sorry. i do say that i have tried to keep up with my posts but will keep you up to date on this weekend i have a few special things going on this weekend i will be hanging out with family. we rented out a entire area to do out Easter at and we will be from what i understand trying to have a cook out and meeting up with some family. i can't wait but have some stuff to attended to before fun happens. but i hope to enjoy myself with this weekend. i do love spending time with family but as normal with me i will probably be keeping to myself as usual. but hope to branch out a little bit with family. but i do love keeping to my shelf. any way i guess i can say i hope to have a good time here and will try to keep on the up and up with everyone here
Hello my fellow readers to day i would like to talk to you about budget cuts that are affecting people with special needs more specifically aba therapy or applied behavior analysis therapy. this therapy is one of the most critical ones that can be used for people with autism. and this is not the only budget cuts that are getting affected the whole special education budget is getting cut witch in turns means that there will be less services offered to people that need them. here is a link to another post on the subject
Hello my fellow readers to day i would first of all like to say i'm sorry for the VERY little activity on this account. but i would like to give you guys some updates on whats been happening. to day i got done with spring brake and was my first day back at college and tomorrow i go back to my class and all of my students are emailing and texting me to ask if i'm gonna be back in class i guess i can say that they can't wait to see me. but other then that i also will be getting my first paycheck this next week at the end of the month. but other then that i can't wait to return to my job that i enjoy so much
hello all my fellow readers to day i would like to talk to you a little bit about what i have accomplished in my life and what makes me feel good about my self. one i remember when i was little i had doctors saying i was not going to live up to much and that i would need to be put in a home or be someone that could not take care of him self. and i would like to tell the people that told my grandmother and parents that at a young age. and i would like to go back and tell them look at what i have accomplished and i would say look at what i have done with my life i'm now a instructional aid teaching special needs kids with super powers to know how to use a computer and i'm working at a paid job and i run my own business doing PC repair i love what i do and my main goal in life is to help people that are in need and to help them in any way feasible. i love what i do and i always want to give as much as i can to help the more needy people. and i ow that thinking to multiple people i ow that to mostly my grandmother that showed me living with less means someone is better off. like when we would give cloths and some of my toys that we never used or that were lightly used to the homeless or to people that needed it. i just see my self in that life needed help one day and looking back on it like i did that and maybe god will return the favor in my life time. i i'm someone that sees life as you get what you are willing to give in life. and i ow my schooling being around people that had more needs then others seeing that they were just like anyone else and that they just wanted love and compassion. and that they wanted to not be called different they wanted what everyone else wanted a normal life. sorry to write a long blog about nothing but i do thank you to all of you that showed me the way in life. you guys are my world
Hello my fellow readers to day i would like to let some light on a subject that has recently come to my knowledge. this subject is about a YouTuber named angry grampa or (AGP) for short. he now has cancer and this is not the first encounter with cancer That AGP has had. his wife and kidbehindacamra's Or Michael Green for short. mother died of cancer and she went un-diagnosed till later in life when it was really bad to the point of killing her. but now agp or Charles has cancer and has known for two weeks and has now finally let it to light. we appreciate it and will stand by AGP and Michael and will offer any support we can to the greens. i have had several family members die of cancer and it can be bad and i completely understand. agp has been scheduled for surgery to have it removed later next month the date is unknown but will be watching social media to keep up with the newsi will be attaching a Youtube video on the subject both agp's video and kidbehindacamras video
- AGP'S Video
- KidBehindacamras Video
Hello my fellow readers to day i just got to work i'm waiting to clock in around 550 or 6 hoping that i can get a lot of work done and make money i get asked just about everyday why i love doing the job i'm doing and i say i know i'm good at it and i can succeed
Hello my fellow readers to day has been a long day i'm expose to be getting put on payroll in two weeks from Monday so one of my dreams will come true in two weeks I've always wanted to be able to teach students and adults what things are possible on the computer. i hope i can one day be a teacher or a adjacent instructor.
Hello my fellow readers today i'm just waking up and getting ready for the day i'm about to head to work in the next hour or so and then work till 5 or 6 i'm one of the opening crew today so witch sucks since night crew always sucks at what they do like they put ice into the trash cans and then not clean certain things or not put certain things together right and expect morning crew to fix it because they are so much in a hurry to get out of the store. but other then that i will update the blog some time later to day when i have some free time
Hello my fellow readers to day i want to show off some of the cool 3D Prints i have made. i'm really wanting to get into computer aided drafting for 3d printing i think being able to print what ever you please is cool now off to the 3d print jobs
Hello my fellow readers to day im continuing my year in the life series i have going. today has not gone well at all i woke up late and i had to run out of the door really fast so i had to leave with shorts and a work tee shirt on and i had to leave with out my staff id and my wallet. i also found out that one of my old girlfriends use to be in my class i teach as i put emphasis on use to be because she is no longer in my class she was in it for one day i think its to spite me but oh well its not going to affect me. but other then that my class has started i'm going to see them to day and i'm about to head over in another hour and half to see what they are up to.
So I just got some good news. I got a promotion at my job and I will now be working as store image, on top of me working as a manager and certified trainer. Its' days like these I like seeing times cards like this. I still can't believe the week I worked 52 hours but in one week I was sore but was very proud that I accomplished that and that I worked for that long of time with out a brake. Normally I would get sensory overload from things around me or I would get too hyper since I have autism but still, I look at what's to come to my life. I also look at things that make me happy when I get customers like this! So I was at work to day and I was walking around the store making sure customers were all taken care of and I was talking with a group of customers when a lady signled for me to walk over. So I did and she asked me what my name was and I said my name is Chris and she asked what I was doing at work and I said I'm a cashier training to be a manager and she flat out asked me "Chris do you have autism" and my response was yes and she said I can tell. She said it doesn't show a lot but to someone that was worked with high functioning autistic you can spot it right on. She said she had a nephew that had high functioning autism. And right out of the blue she started to cry and I hugged her and she bar hugged me and cried as she spoke saying she wishes she could get her nephew to the level I was at and that there had to be a very helpful team behind me helping me with everything she said I have to have a deep loving family and a out standing support team for me to be were I am and its days like this that make me happy to be a teacher....
"Jaydan Thompson was always considered a fighter throughout his battle. His spirit was honored in a big way on Thursday. His body placed in a horse-drawn carriage and was taken down the streets of historic downtown Grapevine, where his grandfather is the mayor." Jayden, a close friend of mine, fought a tough fight against bone cancer. He also was a very compassionate person who would always put a smile on your face. Jaydan played football until his cancer was discovered in 2014. He became the school mascot, Buster the Panther. His family says he discovered a new magic in his life. He also worked as a mascot at Chuck e Cheese’s and won an audition at Disneyland. An article from Fox News 4 can be found here: http://www.fox4news.com/news/230216167-story
Hello my fellow readers just quick update on what been going on My class that I teach in does not start for another 3 weeks. I already have my students emailing me at my employee email and testing me asking me when class will start and they are already wanting to get on with class. But other then that and getting my office back together, I have taken up ad printing for the first ever. The first thing I printed was a USB flash drive and sd card holder for my desk at work because I have a ton of flash drives in my desk and SD cards for cameras so I figured I would put them all in this holder. Also being a staff member, I receive benefits like free printing.
Jayden Thompson: A teenager in high that has been fighting bone cancer for about two years, has come to a end along side his family. Jayden in my words was a better man than myself and most of the adults that are in this world. He always would put on a happy face and try to hide his pain. In his words tried to not make anyone feel sorry for him. His dad, Chad Thompson, has been there every step of the way fighting for him and making sure he felt like he did not have this condition. And I have seen Chad at a very stressful time and I completely understand what he is going threw in life and as I would say it's not easy at all losing a child. You never get over it and I feel some of that pain that they are feeling. I was very close friends with Jayden and I did not see him a lot but we got to talk to each other and we clicked. I just wish I had more time to hang out with him and I'm thankful for the little bit I got to speak with him. There has also when a warrior fund established to help other warriors fighting cancer. Please donate to help others before it's to late. I leave you with a couple videos in memory of this warrior! Jayden's welcome back pep rally videos Photos
Hello my fellow readers to day i would like to go over the topic that has happen over the last weekend. the topic i will be going over is bullying. there was a really big one that happen just this week were 5 black young thugs decided to take a teen that had a disability and tie him up and gag him and decided to cut him enough to leave wounds in his skull and put asses on his head and make him drink out of a toilette and bash his head into a toilet. I DO WARN YOU THE FOLLOWING VIDEO CONTAINS GRAPHIC AND VERY STRONG LANGUAGE VIEWER DISCRETION IS ADVISED
Hello my fellow readers to day went very well i feel ten times better then yesterday or day 6. i can finally eat some more solid items and i can drink a lot more. at first i thought i was going to throw up but thank god i did not. i was also able to walk by my self and not fall and not have to hold on to someone. i also vagily remimber after coming out of antisiha i remimber asking my nusre at the dentist office if i could marry her. she tought it was funny and the sourounding people started to lagh. thats kinda all i remimber tho. i will be trying to post updates more often but till then i will see you next time have a wonderful day
Hello me fellow readers to day i will be having surgery on my teeth. im currently getting all 4 of my wisdom teeth removed and i don't know what to expect but i will be seeing what can be done im hoping that this surgery is not painful but most likely will be in pain after words. but i don't know. i hope to try to give updates at least daily on my recovery i don't know if that will be possbile for the first 2-3 days but will try. as i always say enjoy live and don't take a moment for granted and always look at the bright side.
Hello my fellow readers to day i would like to talk a little bit about were i will be and what will be happening in the next week. first of all i will be having my wisdom teeth removed like all 4 of them. so i don't know what kind of pain level i will be in but hopping that it will be very low but as i say hopes are not always granted. other then that i have taken two weeks off of work and will be enjoying my vacation off. i don't know if i will be able to video record the surgery or after servery because my family does not know how to use a camera but will see if i can get someone to help me out with it i might see if i can get my cousin to help film it. but other then that oh well if it can't be done. well as i always say have a wonderful day my readers and i hope that you can get the best out of like and enjoy every moment you have i sure will be trying to make the best of this with what i have.
well to day is going well my grandparents are going out of town for 3 day and i will have the house to my self other then that i'm at work posting this post right now. and i'm writing it on my laptop that i got for Christmas. and i don't know what to day will consist of but will be hoping to find out with to day. i'm scheduled as my new store image tag but i don't know what i will be doing since i normally don't do deep cleaning kinda of deal
Well were do i start. to day has been interesting i just did my first scam bait call with a windows 10 pro vm joined to a server 2008 r2 enterprise domain and the scammer tried to put syskey on. lol you can see the final video here
Hello my fellow readers to day i would like to talk a little bit about a person that i have been around for a very long time. this person is Stephen Miguez he has always been there for me in my darkest times he's someone that i think has a lot of talent in what he does and he can do anything he sets his mind to he is also a Husband, dad, brother he is more then a brother to me he is someone that i can't wait to be like he is someone that fights for his family with the little he is given and he loves to help complete strangers from helping wild life and fisheries try and find someone to helping a friend weld a ribbon on a boat. he is someone that makes the most he can out of the little he has and dose not ask for more. he is someone that as i say is a real mig and he is someone that defies all odds even when there are more bad odds stacked up agents him then good. i see him working day in and day out trying to provide for his family and try to make others happy in the process. Stephen is someone that will always be in my hart no matter what. Brother i love you and i hope your day goes extraordinary well and i hope that you can get some love from family today. PS: i love you and so does your son's and wife and marry Christmas brother much love
Dear my fellow readers today i would like to say to all my readers merry Christmas and a happy new year and i hope that all you guys got what you wanted for Christmas and get to spend some time with family. and i hope that 2017 brings good luck and that Donald trump does not blow up the world. and i hope that everyone in my family is healthy and happy with there lives.
Hello my fellow readers to day i would like to talk a little bit about what happend to my website and were it is going in a sense well what happen to my website is i forgot to pay for it and it got canceld and i had to re pay for it and by the time i got to pay for it it was too late the service provider i use shutdown and deleted my site and all my content i unfurnetly did not have a backup of any current versen of my website so i was crap out of luck. now were is my site headed after this bad turn of events. i'm planning on posting daily or trying to and i will try to keep my readers up to date with my series i'm bringing over called a year in the life and this goes over what i'm going threw on a daily and how i'm doing and what i plan on doing. other then that i guess that it have a wonderful day my readers
i love to help out my students i teach at a local college. and you may ask what i teach well i teach computer literacy to this class its a very easy class for me to teach but i enjoy it and i love knowing i'm helping someone else out the college i work at is so loveing of me they even gave me my own office shown below love seeing this id
one of the things i get asked alot is how i can keep on and on working at my job and love what i do and i say that is when i see things like this this keeps me going and i love to work i remember the time i was out of a job for 4 months i was fucking depressed as fuck i enjoy working i do and i have allways love to do that my boss loves me for that he can call me in anytime day or night and i will be there
so i was at work to day and i was walking around the store making sure customers were all taken care of and i was talking with a group of customers when a lady signaled for me to walk over so i did and she asked me what my name was and i said my name is chris and she asked what i was doing at work and i said i'm a cashier training to be a manager and she flat out asked me "chris do you have autism" and my response was yes and she said i can tell. she said it doesn't show a lot but to someone that was worked with high functioning autistic you can spot it right on. she said she had a nefue that had high functioning autism. and right out of the blue she started to cry and i hugged her and she bar hugged me and cried as she spoke saying she wishes she could get her nefue to the level i was at and that there had to be a very helpful team behind me helping me with everything she said i have to have a deep loving family and a out standing support team for me to be were i i'm.
Three Months to Finally Tell About Kreed's Brave Fight to Live
A lot of people have asked over the last three months what Kreed had and what he died of. The answer is as complicated as his life was. Nothing with Kreed was every simple or easy. Neither was his death.
When we brought Kreed into the Children's Hospital at Denver, Kreed was already dying, just no one knew it. By the time we brought him to the hospital, it was too late. He was starting his three month decent toward his death. It felt like a tidal wave had hit our life and Kreed was caught in the undertow. Never in those three months did I think we were losing him until the day he stopped breathing on May 8th, 2016, Mother's Day, about four days before his heart stopped beating.
Kreed has been sick with odd things his entire life. Sometime later I will go in more depth. What's important for his diagnosis is the fact that he had megaloblastic anemia. Combined with developmental disabilities, peripheral neuropathy and an immune deficiency. Those four things led doctors to suspect that Kreed might have a biochemical imbalance, a metabolic condition. They ran one simple blood test. A test for about $90 we could have known something was very wrong with Kreed. That test came back high and it told doctors he had one of 14 colbalimum and folate disorders. They ran one more test and narrowed it down to 5. Each equally as rare. One disorder there are 14 cases. Another there are 48 cases. The one they suspected there were only 5 cases. All that had to be tested was his homocysteine. An elevated homocysteine level tells doctors that your body has a breakdown in the way your body is processing B12 and folate and there is a breakdown somewhere along the way. It's a remethylation defect. Further tests revealed Kreed had very low folate in his cerebral spinal fluid which was the cause of a lot of his issues including nonverbal and developmental disabilities. A lot of damage occurred but it was biochemical damage not seen on an MRI.
But flashback maybe four to five years ago, Carie and I were going through his labs and noticed he had this megaloblastic anemia in every single lab of his from doctors. We flat asked his geneticist at the time (in Phoenix) what those labs meant and why they were elevated and he just said Kreed has megaloblastic anemia- he just has large red blood cells, nothing to worry about.
Nothing to worry about as we sit with our child buried below ground. Nothing to worry about as he lay dying in our arms. Nothing to worry about as he has suffered for years and years with pain and breathing difficulties unbeknownst to us. Nothing to worry about. I will never worry about something more.
Flash forward and we spent 15 minutes with the metabolic doctors in Denver and brought them our files of labs and doctors notes and they saw the pattern and ran the test the next day and just like that they knew.
With so few cases, it was hard to pin point which disorder he had and what it would mean. Kreed still presented somewhat atypical.
When we brought Kreed to Denver it was because he stopped walking and his legs were in massive pain. What we didn't know was his nerves that ran from his brain stem to his lungs were short circuiting. That caused him to hypoventilate both awake and asleep. He had become hypoxic throughout the day starting in December but that's just when we decided to start testing him more regularly. Likely it started well before that. We also didn't know that the chemoreceptors in his brain stem were irreparably damaged. What caused that damage, we don't know exactly.
(First night at Children's, he was unable to walk and in pain)
(He continued to be in so much pain in the hospital- his oxygen was also dropping)
Chemoreceptors are what keeps your body in a state of homoestasis. It keeps your ph level in your body stable and monitors the oxygen and carbon dioxide in your body. A normal body will begin to hyperventilate when carbon dioxide rises in the blood. It's a protective factor that your body employs. Kreed did not have this protective factor. This is why he went into respiratory acidosis three times over the three months. It's now also believed that he went into respiratory acidosis way more than we ever knew.
Rewind to 2014 and we admitted Kreed to a hospital at the end of January. He was laying on the ground barely conscious. We have videos that shows it perfectly. We spent one week there- seizures were negative. Heart was fine except fast heart rate. They didn't check anything else. The main pediatrician said we were overreacting and it was just autism. Just autism. Autism doesn't cause a child to lay on the ground passed out every single day barely able to get. Doesn't cause his heart rate to soar to 190 just standing up. Doesn't cause his legs to look bright red and his feet to curl and have difficulty walking. Autism doesn't cause tremors in his hands and loss of bathroom functioning. We were never more horrified with this doctor. Blood gas was never checked. Despite the fact over night his oxygen levels fell. Every night. He got blow by oxygen. They didn't give him a sleep study then. We waited for weeks once we got out. We had to call them and tell them that we still didn't have a sleep study. We showed up for another outpatient procedure (nerve test) and the anethesiasolgist wouldn't put Kreed under without seeing a cardiologist and sleep study. Within a month he got his sleep apnea diagnosis, POTS and neuropathy. Blood gasses were never checked or mentioned despite the fact that Kreed needed ventilation at night for no reason. Nothing on brain MRI. No indication of why he needed nighttime ventilation. And they never checked his oxygen again after the study. For a year. I called and told them he looked blue. I could tell his oxygen was falling at night. They said if I was that concerned to go to the ER. I begged for another study and to match his sleep hours. They agreed to the study but didn't change the hours. Despite Kreed going to bed at 3am on average, the did the study only to 5am. Kreed never slept that night. I still told them his oxygen was low can't they just give us a monitor at home and supplemental oxygen. They said there no need for any of it.
(This is NOT autism...its hypercapnia, POTS, neuropathy and sleep apnea- all undiagnosed at the time).
We moved to Colorado and Kreed was inpatient for surgery and they immediately noticed he needed oxygen with sleep. Phoenix didn't. And he was hypoxic for an entire year. 365 days of not getting enough oxygen at night.
You know when Kreed's death spiral began? January 2014 when the doctor told us when we were afraid Kreed might die that we were over-reacting. Two years later we buried our child. So yes. Yes we were concerned for our child.
Fast forward to February 2016. Kreed couldn't walk. His legs were in immense pain. He had difficulty keeping his Bipap on at night. Probably due to high co2 levels. He was worked up, decided his neuropathy was flared up. Seemed to be doing better after two weeks, we were thrilled. He had his homocysteine test and the metabolic docs began their work up so we also had a looming new diagnosis that would hopefully change his life. He started some early treatments. He was hypoxic on and off so we just used supplemental oxygen more.
Six days later Kreed suffered a devastating seizure outside in our back yard. He had a full tonic-clonic seizure and I sat there as Kreed went lifeless in my arms and his heart stopped. I started rescue breaths and hit his chest. He gasped for air and came back to us. We thought his epilepsy had gotten worse. Three months later experts agree his co2 likely rose to 100% and triggered a seizure. Back to the hospital we went for another week to change seizure Meds, stop his new status migraine with painful DHE treatments and continue his metabolic work up.
He got better. We went home for several weeks. Things were difficult as his new seizure Meds caused severe issues. We switched and he got better. Then we noticed his oxygen was dropping a lot. At night. During the day. A blizzard was coming. We took him to the urgent care connected to the hospital. His oxygen continued to be difficult. They didn't know what was wrong. They ambulanced him to Denver. We stayed three days, got antibiotics, he seemed better and oxygen improved. We took him home happy. Four days later, his oxygen continued to drop. He wasn't better. We drove to Denver and they admitted him again. This time for 36 days. This was Kreed's true spiral.
His oxygen was always teetering on the edge. He had every test known to man. So much came back normal. But he couldn't breathe. A trach was talked about, but Kreed would never survive that. Then they thought pain was causing his breathing issues. He went on better pain regime. He seemed to get better. Then they tested his blood gas. Co2 was 70% in his body. We went to the ICU. He was ventilated with his Bipap for 24 hours and got better. Then for two weeks people missed the fact that he wasn't wearing his Bipap at night like he should have been until I caught it and added up his symptoms. I begged them for three days to check his blood gas. Things didn't make sense. He wasn't doing well but lungs were fine. On the third day they tested it. Then we grabbed Kreed and took him downstairs for some snacks on his scooter. Smiling. Excited for his food. His CA got a call that we had to immediately return to his room. I turned to them and said I bet you he has high co2. The doctors met us with frowns and started apologizing. His Co2 was 91. 91. 91 was his CO2. Back to the ICU he went. Ventilated for 24 hours and back to normal. They checked it twice a day for several days, he was right on target, wearing his Bipap. His oxygen levels improved. Still weren't great, but okay enough. He seemed awesome. For a whole week. We did everything we could at the hospital. We had as much fun as humanly possible. He was so joyful. So happy. It was like a bright light of sun shined down on Kreed. He seemed the healthiest he had ever been. I hadn't seen these smiles in years. I hadn't seen him swing and do his scooter in so so long. Never did I think that this was his energy burst before a sharp decline. But it was.
(His carbon dioxide level is 91 here. He is maybe hours from a seizure and possible death- this is why he was so complicated- do his favorite activities and he didn't care)
So we took him home. He did one more night at the hospital. He had some difficulty wanting to wear his Bipap but he did for five hours. So we went home. Things weren't great when we first went home. He had several rages. I did not have him hooked up to monitors at first. When we did, he was dipping low. So we gave him his Bipap on and off all day. He seemed to be in pain so we gave him some pain Meds and his medical cannabis. He fell asleep at 10pm. Exhausted we went to sleep across from him. We had him hooked up to his monitors and a camera on his monitors so we could see. Carie and I woke at midnight because his monitors were going off.
And for the rest of the night we were dumbfounded because at times Kreed wouldn't breathe at all, sometimes for 20 seconds or more. His oxygen would stay crashed even on five liters of oxygen, the most we had at home. It was the longest night of our life at the time as we were exhausted yet trying to make sense of what was happening. Finally he fell asleep in the wee hours of the morning and continued to sleep solid until late morning. What we didn't know was he had 68 apnea events an hour that night. His decent had started but we didn't know. Didn't think to pull his data from that night from his Bipap until later in the day.
It was Mother's Day the next day so I wanted to take him shopping for Carie. I took his monitor and decided to watch him continuously. And continuously his monitor went off. Oxygen at 75, then 83, then back up to 95. I took him to Five Guys and he happily ate French fries while his monitor silently beeped at me the entire time. Back in the car I gave him supplemental oxygen while we drove around. Next up was a hair cut. He did amazing as we did this, then back in car with oxygen. Finally we decided to go into Walmart and get a card for Mother's Day. We walked in, Kreed seemed to start to panic a little so I tried to comfort him and we walked over to the cards. He scanned a bunch and I questioned him on his device as to which one he wanted. He picked one out. Then we started to discuss gifts and all the sudden Kreed broke into complete panic. You could see it in his eyes- complete panic. I tell him we will go to the car.
Once in the car, I get a reading on his oxygen - 65%. Ugh. I put on his oxygen and we keep it on. At times he needed up to 10-15 liters of oxygen and other times 2. It varied so much. We decided to drive home. Once at home we hook him up to the pulse ox machine and watch him. His oxygen continued to fall. We hooked up a second machine to make sure they matched. Our house rang out with the sound of nonstop alarms. Carie and I just kind of look at each other and Carie starts packing. She saw the look in my eyes. I don't want to go back. That's all I can think. I don't want to go back, we had been home a total of one whole day. Then I turn to Kreed and he looks so bad and suffering so much. He's upset and alarms go off nonstop.
Kreed's brother and his wife also come home from work and sees the alarms going off on Kreed and his irritable mood. He also thinks we should go. He also asks if he can come because if Kreed loses it, he will be hard to keep oxygen on. I agree.
We pack up and hit the car with Kreed. We decide to go to Childrens Colorado urgent care rather than the drive to Denver. We just felt to unsafe and during our drive down the mountain, Kreed goes in and out of consciousness. We arrive at the urgent care center and they assemble a team for him, as they know he can be difficult. They immediately check his blood gas, as that would decide if we go to denver or not and what's wrong.
Ten minute later the nurse in and says, it's time to go to Denver. I ask him what his level is...his carbon dioxide rose to 96%. Kreed was suffocating. A helicopter transfer or icu ambulance was discussed. Meanwhile Kreed finally lost it and his brother and I had to restrain Kreed. Various medications and shots were given as Kreed began to sweat and fight us and throw up. It was a mess.
The icu ambulance finally arrives and we are off to Denver. His Bipap is put on to ventilate him and hope to get his levels back to normal.
By the time we arrive straight to his icu room and being ventilated for an hour, Kreed's levels began to go back to normal. He was in such severe respiratory acidosis. This current episode took its toll on his body. He fought and was exhausted. In the early hours of the morning his levels were back to normal and he could take his mask off. It felt like a whirlwind- from swinging and having a blast at him to the icu in less than 24 hours. What was happening to our baby?
Morning came and we all relaxed somewhat as Kreed seemed to be in better spirits and eating breakfast. Doctors told us we would definitely be staying in the icu for a while to figure out why this keeps happening. Another EEG was ordered as well to help see if seizures were causing oxygen issues. Kreed's stats still varied greatly.
In the late morning I stepped out to talk to his icu nurse about everything. While we were filling out paperwork, we kept looking at Kreed through the glass- he looked grey and just ill. We kept saying how bad he seemed to look, but all his stats seemed normal enough. We even ordered a blood gas that came back normal.
At about noon Kreed requested his Bipap and it seemed he wanted to take a nap. We put his Bipap on and thought it was great he wanted a nap after not sleeping all night and so much fighting. We all relaxed for a bit.
At 12:30pm the EEG tech came to put Kreed's leads on for his test. We would have to take his Bipap off to do so. I walked in and decided to take control of his blow by oxygen in case he had difficulty (his oxygen always drops when sleeping).
We slip his Bipap off. Maybe within a three second period Kreed's oxygen plunges- 80, 75- we move the blow by closer. 70-65- the nurse yells to seal the blow by oxygen around his mouth. 60, 55...45. The nurse yells that he is not breathing, grabs the oxygen from me and hits the code blue. Kreed's room is instantly filled with all available staff on the floor and they have bagged Kreed and giving him full breaths. We stand in silence while the nurses and doctors continue to bag him, stop and wait for a breath and continue bagging when there are no breaths. Kreed was not conscious or breathing. The main icu Doctor turns to me and tells us that we need to leave the room because they have to intubate him. We turn in silence and go wait outside the unit, stunned and shocked and heart broken. Our son was not breathing. He wasn't there. Wasn't conscious. Our boy was "gone" for the moment.
That morning, Mother's Day, will forever be the day we last saw Kreed breathing on his own, moving, fully conscious and aware.
For the next 36 hours Kreed continued to take no breaths on his own and did not regain consciousness. Tests were run. Meetings were held. Doctors were talked too.
At the 24 hour mark Kreed had double pneumonia, three virus's and sepsis.
Finally he began to stir and become conscious after a day and a half, but he still did not breathe and he was in so much pain we had to sedate him with pain medication. Kreed was hurting and out of breath. Anytime he would come to, he would start to fight again, his eyes were unclear and there was nothing but pain and confusion.
Later that night he reacted during suctioning and pulled his tube out. He had to immediately be bagged and a Bipap with a back up rate was put on him- essentially the Bipap was breathing for him.
(Kreed's best guys- Ty and Bill comforting him through the pain- Bill flew in the middle of the night from Arizona to be by his side)
He slept mostly on the Bipap and only a few breaths a minute were his own. Not enough to sustain life. Kreed simply lost the ability to breathe on his own. We were able to get him to drink a few sips of water and a couple of chips on the third day, but by the fourth, his swallow reflex was gone and he could no longer swallow. One by one Kreed's reflexes were shutting down as his nerves shut down.
By the fourth day, his kidneys no longer worked or his bowels. So no breathing, no swallowing, no kidneys and no bowels. Every system in his body was shutting down one by one. And he could not breathe. We couldn't even draw blood from him because his blood was too thick to come out.
Suppose for a second that Kreed could have overcome his illnesses and body shutting down by some miracle...he would have been left with a trach for breathing, a tube for feedings (no more food by mouth since he couldn't swallow), wheelchair bound and an ostomy bag and most likely a kidney transplant due to lack of oxygen to his kidneys causing too much damage. He would have never been Kreed as we knew him, but a boy who was gone, sedated most of the time from pain and unable to do anything he used to enjoy. But he would have never lived through future procedures. He couldn't even live through the infections raging through his body, and every system in his body shutting down. His genetic defect was terminal. There was no treatment in the world that was going to save him. Our Kreed was gone. He was gone really on Mother's Day when he stopped breathing and lost consciousness for 36 hours.
Eventually at 12:30pm on May 12th, Kreed's body could no longer sustain life and he crashed again and we would not get him back. He could not breathe and his heart finally gave out at 3:29pm. Our brave boy fought his last battle and lived his life to the fullest.
Three months later we are still working on answers. He has a genetic defect in the MTHFD 1 gene. Super rare. He is 1 in 7 billion. The only person in the world with that particular mutation. Five other people have a mutation in that gene but not his particular one (8 over all, three died). His gene and skin cells are continuing to be studied to find out exactly how those defects have affected his cells and ultimately what happened to his body.
We do know he suffered nerve death all over his body and without nerves to send signals to various parts of the body, it shuts down. His nerves from brain to lungs were damaged which also affected his blood sugar and everything else. The strongest part of his body was his heart. It beat so strong and for so long even after it shouldn't have been beating any longer with all the damage his body had incurred. I'm not surprised because that's how Kreed lived his life- with his heart, his love, his joy.
While for so many his death was a surprise, it was to us only up until Mother's Day May 8th. It was in that moment that we knew Kreed was not going to survive what was wrong with his body. But nothing will ever prepare you for the day a child's heart stops beating.
It's taken three months to write this, process this and re-live those three months, and that last week. We had discussions about Kreed and him not making it to a full term of life at various times, but nothing prepares you for the reality. Watching your boy suffer for his entire life until the end.
But through it all, the pain, the suffering, the frustrations and complicated life he lived, he truly loved life. He truly lived life. We tried to give him as epic of a life we could. Nothing was out of our reach and we lived with no limits- never knowing there was a limit on his life. Even in the last two weeks of his life- he lived without limits and was so happy and full of life and sharing his light, joy and happiness with so many people- whose lives have now been forever changed, just by knowing our boy for a few months. The outpouring of love for our boy in the days, weeks and months following his death have been incredible. We never knew the impact sharing our story would have and the impact of this one boy who loved to live his life and teach others there were no limits to the things they could do and accomplish.
And now nothing compares to our utter sadness. Our soul death. Our emptiness. The joy being extinguished from our life and we are left to pick up the pieces from a shattered life and live a life we never wanted. We prepared to take care of him for the duration and were looking forward to giving him even more life experiences. All of that was ripped away from us without our consent and without knowing. We sit in an empty house devoid of his sounds and hopping and happiness. We drive in an empty car without his rocking to music. We live in an empty life missing our joy and happiness. We lived with a truly amazing boy and human being and now our life seems cold, removed, empty and joyless. He brought joy to everything and every second counted. Now time drags on with every second tick screaming in our heads as another second ticks by without him. A life without him. A life without joy.
The best we can hope for is that he continues to change lives. And that somehow, someway, we will find a meaning to life- although that seems impossible now because he was our meaning and our everything and life seems so pointless without him and his celebration of life.
So now you know. On the three month anniversary of his passing, these were the events that so many didn't know about because we never knew we would be telling the story of his end. We always thought we would solve his mystery and give him this amazing, epic life. Instead we are solving the mystery of his death and hoping somehow it helps others, even though as it stands now he is alone with his genetic mutation. Kreed was always unique, we just never knew how unique.
To you all, our final wish has always been to live in Kreed's way.
One life. No limits.
all Credit goes to Kreeds world and kreeds mom erin pulk
URL FOR SITE: http://kreedsworld.blogspot.com/
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