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Baby Kason
Started by: Karen Ellibee
Baby Kason
Little baby Kason, my new grandson, was born on 3-20-22, which is two months early. Kason has a chromosome deletion which extremely rare, but matters were complicated by being born so early. He is a little fighter and has fought so hard from day 1 to be here. My daughter and son in-law are still at the Ronald McDonald House in Oklahoma City while he is being cared for. I am watching after their soon to be 8 year old daughter during this time. As you may know, bills don't stop coming and the world does not stop because we go through difficult times. My daughter is on maternity leave which will end soon, but son in-law is not getting paid while he is caring for his family. Times are tough for many right now, but if you can help in any way I know it would be greatly and sincerely appreciated. They are a young, hardworking family who are too humble and proud to ask for help when it is greatly needed.
Latest Update
8-19-2022 Kason's first field trip out of his hospital room.
Posted by Karen
August 23 at 12:19am
8-20-2022 - Kason is 5 mos old!
Posted by Karen
August 23 at 12:15am
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8-15-2022 - This little guy has had such a big week getting his G/J tube placed on Thursday and having his laser eye surgery completed on Friday. He is back on his home vent with his regular settings and back to his normal feisty self! Such a strong kiddo. We’re excited to see what this weeks goals will be. We’re starting to talk about goals for discharge! 🤩🤩🤩 Getting closer! 💪🏼🎉🥰💛 Stay Tuned. -- Katie Adams
Posted by Karen
August 16 at 10:50pm
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8-9-2022 - Update: Kason will have his g/j tube procedure on Thursday. He will have his ROP eye surgery on Friday. They will need to change his ventilator settings, but hopefully he will return to his current settings quickly. These are the last known procedures before we start transitioning to home.--Jeffery Adams
Posted by Karen
August 16 at 10:48pm
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8-8-2022 - Yesterday was such a beautiful day. As soon as London came into Kason’s room, Kason’s eyes instantly connected to Londons. He was so enamored with her, they had an immediate attachment. Before London left she said to me, “now I know why it’s hard for you to leave his room.” She is such a great big sister already & I can’t wait to watch their bond grow. 🌳 ☀️ 💧 🌈 Literally had to fight tooth and nail for the past 2 months just to get NICU to approve London 15 minutes with her brother. AND IT WAS WORTH EVERY MINUTE. 💛✨-- Katie Adams
Posted by Karen
August 16 at 10:45pm
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8-4-2022 - Update: Kason upgraded his accessories yesterday, still unsure of it. Lol He will have his laser eye surgery sometime next week. Still waiting on pediatric surgery to schedule his g/j tube placement, hopefully soon. He is becoming more aware daily, and getting more active. We are gearing towards the transition program, so we can start imagining our new life at home.-- Jeffery Adams
Posted by Karen
August 16 at 10:41pm
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8/2/2022 - 12lbs .6oz today!
Posted by Karen
August 16 at 10:37pm
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7-25-2022 Update: Kason has been doing well. He did have an event the other day during a tracheotomy tie change. Katie and myself are handling all of Kason’s tracheotomy care, we are waiting for Kason to move to the transition to home program. Things have been moving in a more positive direction, hopefully we can stay on track to home. -- Jeffery Adams
Posted by Karen
August 16 at 10:17pm
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July 21 - Making the headlines!
Posted by Karen
August 16 at 10:15pm
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Posted by Karen
August 16 at 10:12pm
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July 12 2022 Update: Kason is still recovering from his procedures. The team would like to bypass his stomach, his g-tube was leaking during feeds. We are now learning of the next phase for Kason’s care, which involves the transition to home program. OU and the Bethany campuses have excellent programs, availability is the determining factor. Hopefully the worst is behind us.-- Jeffery Adams
Posted by Karen
August 16 at 10:08pm
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7-7-2022: Kason is recovering from his procedures, his wounds are healing well. He is getting used to not having the tube in his mouth, he still sometimes sucks like it’s still there. Feeding is going good, no vomiting or aspirations currently. Hopefully this will continue. His head ultrasound showed some changes in his brain, that could be possibly problematic but not a concern today. He will have a brain MRI, once his trach can be changed to an MRI appropriate tube.-- Jeffery Adams
Posted by Karen
July 7 at 8:29pm
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7-6-2022: Kason took a pacifier continuously for the first time last night. Anyone that knows Kason at the hospital knows he hates anything that has to do with his mouth. This means, wiping off lips, oral care, and pacifiers. He has never been a fan. Which I think has to do with being intubated back and forth along with his deletion making it hard for him to accomplish the coordination many babies have right off the bat after birth. But, last night I tried a pacifier I got off of Amazon and he did great! Still trying to work on that sucking reflex and coordination so he can eventually take a bottle and work on swallowing easier. We are so proud of him! 💛 Lol look at the last pic, he is saying hi. -- Katie Adams
Posted by Karen
July 7 at 8:27pm
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7-1-2022: Kason’s surgeries went well, uneventful the surgeon said. He is still paralyzed but is stable. This is the first time Katie and I have seen his face, without something on it/coming out of his mouth. --Jeffery Adams
Posted by Karen
July 7 at 8:21pm
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6-30-2022 Kason’s surgeries went well, uneventful the surgeon said. He is still paralyzed but is stable. This is the first time Katie and I have seen his face, without something on it/coming out of his mouth.-- Jeffery Adams
Posted by Karen
July 7 at 8:19pm
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6-28-2022 The staff was able to schedule Kason’s procedures on the same day. The tracheotomy and G-tube will greatly help his health. Kason has been struggling the past few nights that required him being bagged. Kason will go through difficulties, but he will come out on top like always. -- Jeffery Adams
Posted by Karen
July 7 at 8:16pm
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6-21-2022 Kason’s events and wheezing continued to increase throughout the weekend. He has been placed back on ventilator support, which has allowed him to rest. Kason’s sleep study showed severe obstruction, which is due to his severe lung disease. Tracheotomy will be the safest route for Kason’s health. Will hear from the pulmonologist to confirm the recommendation. Kason will have a combo surgery to limit intubation in the near future. Kason also had an eeg study which showed high probability of future seizures. --Jeffery Adams
Posted by Karen
July 7 at 8:13pm
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6-21-22 - Kason’s events and wheezing continued to increase throughout the weekend. He has been placed back on ventilator support, which has allowed him to rest. Kason’s sleep study showed severe obstruction, which is due to his severe lung disease. Tracheotomy will be the safest route for Kason’s health. Will hear from the pulmonologist to confirm the recommendation. Kason will have a combo surgery to limit intubation in the near future. Kason also had an eeg study which showed high probability of future seizures.--Jeffery Adams
Posted by Karen
June 23 at 4:51am
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6-16-2022 - Kason had another major event last night. He needed bagging for multiple minutes. He currently has constant eeg monitoring on him, it didn't recognize any seizure activity. The doctor now wants to consult the sleep specialist to see if he has obstructive apnea. Also consult ENT, and pulmonary to see if he may benefit from a trach. If so she would like the trach surgery to be done at the same time as the Gtube to limit multiple intubations. Jeffery Adams
Posted by Karen
June 23 at 4:48am
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6-14-2022 - The last 3 days have been eventful. Last night Kason vomited and his vitals crashed, he had to be bagged to get him at a safe level. Kason’s G-Tube surgery has been rescheduled to next Monday, there was miscommunication between specialities. Then to top everything off Kason left arm was fractured somehow. The fracture does not require surgery, and should heal without complications.--Jeffery Adams
Posted by Karen
June 23 at 4:41am
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6-10-2022 - Kason will have surgery on Monday to place an G tube. The surgery will allow the team to remove the oral feeding tube. He will need another surgery to place an G/J tube to directly put food into his intestines. He has been doing better once the team stopped decreasing his O2 settings.
Posted by Karen
June 23 at 4:34am
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6-7-2022 - We almost had it today guys! Lol but Kason changed his mind about today. We were 2 liters on his O2 yesterday, but I guess he was breathing harder last night and Dr decided to push him back up to 2.5 liters. Which means speech therapy has to hold off on starting bottle feeding process until he goes back to 2. 😫😫 He is so close to his next milestone I can taste it! -- Katie Adams
Posted by Karen
June 23 at 4:29am
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6-6-2022 - Kason pulled his feeding tube out last night. They had to take him to fluro to replace it. Had his monthly head ultrasound, and his weekly eye exam today. His personality is starting to show, he tells us what and who he likes and dislikes. Lol Jeffery Adams
Posted by Karen
June 23 at 4:26am
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6-1-2022 Kason had blood in his stool last night. The team ran a battery of test, most were negative, one showed slight inflammation. Yesterday he had an fluro exam of his kidneys due to his multiple UTI’s. During the exam they noticed his feeding tube was not in the appropriate position. They reposition it, the doc believes this may be the cause of blood in his GI tract. Today he is content and enjoying his fish tv. Jeffery Adams
Posted by Karen
June 23 at 4:22am
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5-27-2022 Kason has reached a major milestone. He is no longer on the ventilator, currently on high flow O2. The doctors are watching closely to see if his lungs can handle the change. There's still the option of oral feeding, but we need to know if he can handle high flow before placing a semi/permanent g/j tube. Tracheotomy seems less likely currently but Kason is the boss.
Posted by Karen
June 23 at 4:16am
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5-20-2022 - Update: Kason will need another blood transfusion, the team haven’t been able to place a iv yet. Hopefully today they will. He is also being treated for aspiration pneumonia. After a in-depth conversation with the team, they will schedule a care meeting with ENT, ped surgery, and other providers. Kason will hit 8lbs soon and is past his due date. He currently has a tube that transfers milk directly to his stomach, but it still allows moderate acid reflux. To correct it he may need a tube to place milk directly to his intestines. Also he may not come off the ventilator anytime soon, to get him home he may need a Tracheostomy. Hopefully these ailments will be addressed, so we can bring baby boy home safely.--Jeffery Adams
Posted by Karen
June 23 at 4:06am
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5-17-22 Update: Kason has another UTI, which is being treated. The doctors want to have a kidney fluoroscopy to address the recurring infection. Kason has to graduate to room air before it can be done. He also will have a kidney workup to address his retention of fluids, which he keeps needing lasix. They want to wait before giving another round of blood, to allow his bone marrow to stabilize itself. --Jeffery Adams
Posted by Karen
May 19 at 3:27am
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5-15-22 Update: Kason regressed last night. They had to bag, and increase his ventilator settings. The doctors are looking into possible aspiration pneumonia. Also possible viral or bacterial infections. He is receiving antibiotics until all test results come back. The doctor did formally state that, Kason has chronic lung disease. He is resting and not as irritable as yesterday. --Jeffery Adams
Posted by Karen
May 19 at 3:22am
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5-12-22 - Update: Kason is having a great day. The doctors would like to continue diuretics, to aid with excess fluid in his lungs. His pulmonary functions are improving but at a slow pace. Hopefully in the next few weeks he can transition from the ventilator to cpap and finally room air. Feeding should follow, he may need a g-tube if he struggles with oral feeding. No one can predict his discharge, but hopefully he will be home in the next month or two. He enjoys his physical therapy, especially his massages. Lol --Jeffery Adams
Posted by Karen
May 19 at 3:19am
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5-9-2022 - Kason had multiple tests in the last couple of days. His head ultrasound showed no increase in his ventriculomegaly. The kidney scan showed no signs of inflammation. His heart echo did show mild patent ductus arteriosus (PDA), which is an opening between two blood vessels leading from the heart. He has an eye exam tomorrow to see if his retinopathy has changed. Kason is doing well with his vent setting, and the laryngeal surgery has helped with his reflux greatly.-- Jeffery Adams
Posted by Karen
May 10 at 9:10pm
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5-6-2022 No major changes just trying to wean from the ventilator, cough up this extra junk in his throat, and continue with 50ml feedings. 👍 Monday: ultrasound day for heart & kidneys. So more to follow. 👀 And random note 📝 Kason has upgraded from preemie diapers to newborn diapers. --Katie Adams
Posted by Karen
May 10 at 9:04pm
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5-5-2022 Awake and extubated this morning! -- Katie Adams
Posted by Karen
May 10 at 8:55pm
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5-4-2022 - Kason is still intubated, hopefully will be removed in the next day or two. He had an extreme amount of fluid from iv solutions, received multiple rounds of lasix to remove the excess fluid. Kason is still a little out of it since the procedure, but his feistiness in coming out. He was diagnosed yesterday with stage 2 retinopathy of prematurity, will have follow up soon. He will also have multiple testing in the following days for multiple diagnosis’s such as, Tetralogy of Fallot defect, his ventriculomegaly, and his kidney post infection. --Jeffery Adams
Posted by Karen
May 5 at 11:09am
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5-2-2022 - Kason’s procedure was this morning. The doctor performed an endoscopic laryngeal cleft repair. His vocal cords had a abnormal cleft, which allowed food to enter his trachea. The repair went well, he did have an event during intubation which he needed CPR. He is now resting, and hopefully will start to awaken soon. -- Jeffery Adams
Posted by Karen
May 3 at 10:59am
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4-28-2022 - Kason will have surgery on Monday. It will consist of exploration of his trachea and esophagus. Depending of abnormalities he may require a small procedure or a larger repair of his T/E tract. His hematocrit levels have dropped again, so he will receive multiple transfusions today. --Jeffery Adams
Posted by Karen
April 29 at 3:31am
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4-26-2022 - Kason is still struggling breathing and maintaining safe O2/CO2 levels. His ventilation is extremely high for his age and weight. First plan of action is to consult ENT and get an upper GI endoscopy. If the scope shows no abnormalities, they will look deeper into his cardiovascular/pulmonary system. With Kason’s chromosome deletion and no other cases to review, we do not completely know what to expect or focus on. Genetic conditions usually effect neuro, cardiovascular, pulmonary, GI, and kidney systems. We all will learn with time.-- Jeffery Adams
Posted by Karen
April 27 at 11:27am
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4-24-2022: Kason is no longer intubated. His CO2 isn’t completely level, so his still on high flow. The head ultrasound didn’t show a increase in his ventriculomegaly. He will have a kidney scan tomorrow, to see if there was a change since his UTI. Kason is content with being held by his mommy this morning. --Jeffery Adams
Posted by Karen
April 25 at 11:26am
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4-21-2022 - Kason is still intubated, hopefully they will remove the tube tomorrow. He has an UTI, which the doctor believes caused all of his recent instability. Nurses noted increased head circumference. A ultrasound was performed, which didn’t show an increase in his ventriculomegaly. He still has a lot of mucus in his airway, but the doctors believe will improve without intervention. --Jeffery Adams
Posted by Karen
April 22 at 11:03am
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4-18-2022 Continuous ups & downs for Kason.
Posted by Karen
April 19 at 3:22am
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4-14-2022 - Kason regressed over night, he will receive a blood transfusion later today. They also believe he aspirated last night, waiting for culture before antibiotics are started. X-ray will be done to rule out pneumonia. Treating his reflux with medication to see if it's from stomach acid, or something else. Will do a scope of his throat down the road when he is stable, to determine if he has a blockage in his airway. --Jeffery Adams
Posted by Karen
April 15 at 3:13am
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4-12-2022 - Kason has been gaining weight like a champ. The staff that took care of him when he first was flown to OU, are amazed how big he has gotten. He has been struggling with regulating his vital signs, and body temperature. Kason’s hematocrit levels are low, the doctor is watching closely. Kason may need a transfusion, they should recheck later today or tomorrow. Thank you to everyone that has checked in with us or our family-- Katie Adams
Posted by Karen
April 13 at 10:46am
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4-10-22 Today Kason is 3 weeks old! This handsome boy is 4 lbs. 10 oz. starting to regulate his temps better & sometime today get his picc removed! On the flip side he is still having multiple Brady events & reflux is a monster especially during feeds! Baby K is working on it, but it takes time.-- Katie Adams
Posted by Karen
April 11 at 11:06am
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4-8-22 Having some nasty reflux today, but still looking cute. The night nurse made this Easter sign last night. -- Katie Adams
Posted by Karen
April 9 at 3:18am
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4-7-2021 - Omg y’all let me tell y’all about Kason today. He is 18 days old today, he weighs 4lbs 8oz, he is doing great on his feedings besides his reflux, and he is off his fluids today! I know he still has some low moments, but overall baby boy is making strides! I am so proud of him!! ----Katie Adams
Posted by Karen
April 8 at 3:15am
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4-4-2022 - Kason has been doing amazing with his feedings. He is controlling his respirations and heart rate without intervention. Kason has some important testing coming up this week. Repeat brain scan, and eye examination. He is still fragile, so every day is new-- Jeffery Adams
Posted by Karen
April 5 at 3:25am
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3/30/2022 - Kason had a slight regression from yesterday. His blood gases, and respiration’s were up and down. They placed a mask instead of nasal cannula to stabilize his respiration’s. His right lung still has not fully expanded from his recent aspiration, so they are watching closely with that. Otherwise he is 4lbs 2 ounces, staff said he is the big boy on campus lol. We all have to remember he technically is supposed to be in Katie’s belly maturing. So each day is a step forward in his development -- Jeffery Adams
Posted by Karen
March 31 at 10:51am
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3-29-2022 Kason's blood gases have stabilized. He had an uneventful day. He is expected to remain at OU Children's Hospital at least until his actual due date which was mid to late May. There is a possibility of him being transferred to Lawton NICU, which would be extremely down the road.
Posted by Karen
March 30 at 4:14am
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Kason was extubated earlier today. Currently his CO2 is elevated, they are waiting on another round of blood gases to decide to either keep him extubated, or to intubate him again. He is consuming milk through a tube, and is gaining weight. Almost to 4 pounds, yay! He loves his cuddle time and to have his hand held--Jeffery Adams
Posted by Karen
March 29 at 3:00am
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16 Supporters
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- Anonymous1 year ago
- Anonymous1 year ago
- Anonymous1 year ago Gods blessings to each of you
- Cameron1 year ago
- Cindy Smith1 year ago Prayera for you Kason!
- Courtney Guffy Taylor2 years ago
- Anonymous2 years ago
- Crystal Jeans2 years ago Praying for yall
- Marvin & Christina Reese2 years ago
- Susan J Coy2 years ago
- Show 6 more supporters
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