March 23: Katelyn is HOME! She still can't stand or walk, but she is making progress towards that daily. She has outpatient PT for the next several weeks. Please keep praying for her.
March 11: They approved the insurance for Katelyn (spelled with one N) to stay in rehab longer. She will go home soon and then do outpatient rehab for six weeks. Katelyn can still not stand or swallow well, but she is improving in moving from chair to bed/bed to chair. Mr. Duman has been very good to the family, and JoLynn is able to work from the hospital.
March 3: Katelynn is doing well with the therapy. JoLynn asked us to pray that the insurance company approves more rehab so they can get her walking.
Feb 16: Update from JoLynn: The Pampered Princess moved to rehab today, she will be getting 3 hours of therapy Monday thru Saturday. She has lots of work ahead for the next 4 to 6 weeks , then we will be in out patient therapy for a very long time but they think she will be able to walk again. Mommy is in rehab too to learn the best way to take care of her Princess and manage her calorie intake and feeding tube.
Feb 12: Update from JoLynn: After 41 days in ICU The Pampered Princess is in a regular room 🙌😀 has moved to the Neuro Science Unit room 704 . God is so good ! Thank you for all the prayers we will soon be on our rehab journey to home
Feb 10: I texted with JoLynn. Katelynn is on an upward track, but the progress is very, very, very slow. She was able to have a few sips of Pepsi a couple of days ago.
Clint and I were able to continue working on a big project that had been put on hold due to the rain, but now we can do the work. That makes it hard for me to update about Katelynn. If she has any significant setbacks, I will post the prayer need.
I do know she has some fears about standing and walking due to the number of falls she has had, so please pray for her peace and sense of security. One of her lungs still has some gunk from the pneumonia to clear out.
JoLynn has been able to work from the hospital. Her boss is a Christian, city official, and owns a business in our hometown. From what I have observed over the years, he has always been very good about working with JoLynn as she cares for Katelynn.
Feb 10: Praise report on The Pampered Princess … her sleep results are in, No oxygen required at night, she will use a regular CPAP at night but otherwise lungs are healing , the Doctors are amazed at this progress, we will be leaving ICU in next few days waiting on a bed to open up, by end of next week we should be transferred to Rehab with a plan to go home first week in April. She is starting to eat, food has to be chopped real fine but she enjoyed a baked potato tonight, Chick fil is in her near future
We are blessed to be on this journey but it is not going to be easy on her, we thank you for all the love , support , and prayers, keep the prayers comingFeb 6: Update from JoLynn: The Pampered Princess is having a milestone day, this afternoon was able to have her first sips of water and did great, swallow test tomorrow and working for Chick fil a first of next week, qualifies for rehab therapy and should be coming out of ICU by end of the week!
God is blessing this girl and answering our prayers daily
while I was at lunch today her nurse did her hairFeb 5: Update: The Pampered Princess had a good night, she is talking a lot, asked her Doctor this morning “did you bring Chick fil A”
hoping to get a swallow study done in the next few days so maybe some Pepsi is in her future this week.Feb 4:The Pampered Princess has passed her test and now is on regular oxygen. God is good!!
Feb 2: The Pampered Princess is having a good day… music therapy, physical and occupational therapy, just got her hair washed and blow dried, now busy coloring, I see a nap coming this afternoon. Doctors say pneumonia has cleared in her right lung, still have some issues with the left lung, her high flow oxygen has been turned down to 10 and they are begining to make plans for her leaving ICU and moving to the neur floor possibly end of next week. God is good
Feb 1: The Pampered Princess is having a good day, all cleaned up, hair done, watching some Price is Right waiting for therapy this afternoon. Tremors are improving and high flow oxygen down to 15… a little progress each day.
Jan 31: PTL!! BIG UPDATE: Today is day 32 at CHKD, day 30 in ICU and we finally have answers all the labs and tests have come back No autoimmune diseases our respiratory issues are from a severe case of the flu, and our mobility problems are from a vitamin deficiency and Carnitine deficiency - this converts fat into muscle, she is storing fat instead of building muscle and is painful to get up and move around, she is getting her vitamins replenished and when she can eat and drink will be on a high protein, low-fat diet. Her respiratory is slowly improving high flow oxygen during the day, bi-pap at night, and chest x-ray showing improvement, today will have PT with a goal of sitting in a chair for 1 to 2 hours, being in bed has made her extremely weak but should be able to recover. Her road ahead is still a long one and we will be here 6 to 8 weeks depending on how she progresses but we are beyond thankful for answers and for all the support and prayers from you all. Continue to keep her in your prayers and give thanks for the miracle we have received.
Jan 30: The Pampered Princess got good news… MRI shows nothing new but did not give an answer for tremors, they made an adjustment to her VNS and are adding a medication in the morning time that should help. I washed again today .. got to keep her beauty treatments going
thank you all for your prayers God is good" <--I was unable to get this to post last night. I dripped water on my keyboard while preparing Thai basil cuttings for rooting.The Pampered Princess had a restful night and is headed down to her MRI, the nurse asked her was she ready to go, she shook her head yes and whispered Target. Praying the Doctor get the answer to the tremors today.
Jan 29: The Pampered Princess is resting this morning , back on high flow oxygen, getting all her seizure meds, had to have ativan around 4 so she is getting some good rest …praying we can stay seizure free today and keep making a little progress with respiratory and physical therapy
I just posted for the 28th. I apologize for not updating over the weekend. I was very tired and we were very busy. -W
Jan 28: PM UPDATE: The Pampered Princess is in need of your prayers just had a seizure, Neurologist changed her seizure medication due to tremors and obviously she still needs it. She had been 2 1/2 years with no seizures . A rescue IV had to be put in her foot since her veins in her arms are not cooperating from all the other ivs. I am afraid the staff tonight had to see the ugly side of a Momma that fights for her child but they are on the case now. Going to be a long night!"
AM Update: The Pampered Princess is getting a little stronger each day, chest X-ray shows some improvement , going to continue high flow oxygen all day, bipap at night to give her lungs a rest, should hear from some labs middle of the week
in the chair and watching BarneyUpdate Jan 26: Update from JoLynn: The Pampered Princess is having a better day, sat in the chair for over an hour, had speech therapy, told the respiratory therapist no in a loud whisper and is on a trial of high flow oxygen.
Update Jan 25: The Pampered Princess is ending her day on good note, fever has been below 100, and the bipap and her have maintained her oxygen level in the high 90’s, at 99 right now, she had her EEG this afternoon, hope to hear some results tomorrow. Thank you for the prayers
The Pampered Princess needs your prayers this morning, having trouble maintaining her oxygen level, is back on the bipap at 100% , has pneumonia in bottom of her lung, having EEG around 11:00. Keeping the nurses and doctors hopping this morning!
Update Jan 24: The Pampered Princess had a restful night after an eventful afternoon of throwing up, they changed her feed formula and she did not tolerate it , today we try another formula are on high flow oxygen and hoping to do away with bi pap mask, pt and ot therapy is in our schedule as well as speech therapy. She still is not talking just a whisper every now and then but they say it’s a time thing to let her voice box and throat heal, she is swallowing so that's another step in the right direction.
Update Jan 22: I asked JoLynn if Katelynn was still in ICU and she said yes. Originally, they thought she'd be out of ICU around the 12th-13th of January, but Katelynn was worse off than doctors originally thought.
Update from JoLynn: "The Pampered Princess is a little stronger today, lots going on, Respiratory therapy is being increased to work on getting the secreations out of her lungs, Physical therapy will be coming to get her into her chair for a couple of hours, speech therapy is coming to evaluate her swallowing abilities and a few Doctors will be checking to see how things are going. Thankful for small steps everyday."
Update Jan 21:
Update from JoLynn: The Pampered Princess made it 12 hours on high flow oxygen 😀😀😀and she whispered today for me to “sit down” beside her, so happy the boss lady is returning 😀😀😀. The Butler Boy stayed with her this afternoon so I could get a few things done at home and had lunch at Mammie’s it was good to be out but don’t like to leave her to long, but they were just fine❤️❤️❤️
Update from JoLynn: The Pampered Princess had a good day her 2 hour trial turned into 3 and she just finished her 4 hour, may try all day tomorrow. She is much more awake and alert today with sedation being completely gone, enjoyed lots of stories, cards playing, and Disney movies. She is slowly winning this fight!
Update Jan 20: Last night's update from JoLynn: The Pampered Princess working on another breathing trial, we played connect 4, cut some fruits, and read stories she still has not said a word but hoping she will tomorrow they say her throat is sore from the breathing tube for 2 weeks and all the secretions, but it feels so good to get hugs again.
Jan 19: Update from JoLynn: "The Pampered Princess had a restful night, she will be having 2 one hour trials with high flow oxygen today, she enjoyed the music man and tried to clap her hands, they are cutting her sedation back as well, she is able to sit up in bed today and gives the nurse a fight when she has to be suctioned, baby steps but slowly improving." Please keep praying for Katelynn.
Jan 18: "The Pampered Princess is resting this morning it was a busy night in ICU and thankful we were not in need of too much attention but getting a bath at 1:00a.m. Did not make for a happy Princess, we are still waiting on blood work to come back from outside labs, hoping to start trials on high flow oxygen to get rid of bipap mask and to try sitting up in bed for 30 minutes, taking baby steps on this road to recovery,"
Jan 17: "The Pampered Princess had a restful night but is having a bit of a rough morning dealing with lots of secretions in her throat, her chest X-ray looks better today, and her lungs are getting stronger but are requiring lots of suction and it’s making her scared. Praying that she can continue to stay with BiPAP mask and oxygen and not have to be put back on the ventilator."
Jan 16: "The Pampered Princess had a restful night, she was able to keep her oxygen levels up, possibly today will get rid of the mask and go to nasal flow oxygen. She was able to color a little bit yesterday and loved listening to Winnie the Pooh stories and hand-holding with Mommy and Daddy. Keep the prayers coming as we travel this very long road ahead."
Jan 15: Update: "The Pampered Princess is breathing on her own!! Praising God for answers to our prayers , Doctors will be discussing our treatment plan today and our long road to recovery." PTL! The Asbells are rejoicing!!
Update from JoLynn: "The Pampered Princess is improving she passed 2 2-hour breathing tests during the night and the plan is to take the breathing tube out this morning and switch to a bi-pap mask."
Jan 14: Update from JoLynn: "The Pampered Princess is having a good day, enjoying stories being read to her and lots of hand holding, she is not getting the breathing tube out today, but hoping for tomorrow. Praying her lungs are ready to go back to working on there own after 2 weeks on the ventilator ❤️❤️❤️she got to FaceTime with Mammie and her onions (what she calls her cousins)"
More progress! Update from JoLynn: The Pampered Princess continues to improve and the breathing tube maybe removed today 🙌 so thankful for answered prayers ❤️❤️❤️
Jan 13: Update: The Pampered Princess is definitely getting stronger she was able to do 30 minutes of breathing on her own last night and this morning for a whole hour, she will continue to have these tests until she is strong enough to come off the ventilator. She is definitely making progress and much more alert at times, working on taking bandaids off, her pulse Sox is always coming off and she tries to adjust her blankets around her stuffed animals all while her hands are restrained so she does not disconnect all the stuff hooked to her… look out nurses the busy body is coming back😀😀😀Praising God for answers to our prayers
Jan 12: Update: from JoLynn: The Pampered Princess has an early start today, heading to the OR for a muscle biopsy and bone marrow sample at 7:30, had a good night. They are adding steroids today to help with the inflammation of her muscles . Please pray that her lungs can build strength so she can get off the ventilator
Jan 11: More Progress! This morning from JoLynn: "The Pampered Princess had a good night, the ventilator setting has been turned down and so far she is handling it well, it may be tomorrow for her biopsy as the OR is very busy today, but she will have plasma exchange treatment, and dialysis today."
Jan 10: From JoLynn: The Pampered Princess has a diagnosis today: Polymyosits Nerve Syndrome it’s an autoimmune disease that occurs from a viral infection in the muscles . She has to have a biopsy on leg muscles to determine what stage we are in but we are taking the proper treatment and will be adding a few other meds. Myasthenia Graves results are negative
pered Princess is getting her plasma infusion treatment now and will have dialysis later this evening , The Neurologist does not have a answer yet so the lower MRI will hopefully happen tomorrow he believes she is getting the proper treatment no matter which condition she has but his quote” she is still a very sick girl “ Keep those prayers going!!!
From JoLynn: "The Pampered Princess had a good night not much sleep but still good, preliminary MRI report shows no bleeding or tumors and the Neurologist maybe able to give a definite diagnosis today. She will have her plasma exchange treatment around noon." JoLynn also said that there were no issues while the VNS was off so the first MRI could be done.
Jan 9: I lost this update while trying to fix an HTML error.
Jan 8: Update from JoLynn: "The Pampered Princess will have her MRI at 4:00 today just of her brain, then do lower body tomorrow … it’s is safer for the VNS implant. She is considered stable, she was looking around this morning and able to shake her head yes or no to a few questions . Our prayers are being heard so keep praying."
Update from JoLynn: "The Pampered Princess had a pretty good night, her MRI should get done sometime this morning , her VNS will be turned off for this procedure making for a nervous Momma , praying she can get thru this with no seizures!!"
Update Jan 7: From JoLynn: "The Pampered Princess had a restful night, she had dialysis late yesterday and that helped with the fluid she was retaining, also had a ultrasound of the kidneys. The plan today is just the plasma exchange treatment and hoping for the MRI tomorrow and getting the puzzle pieces put together for a definite diagnosis of which autoimmune disease we have. Keep those prayers coming and enjoy your Sunday."
Update Jan 6: From JoLynn: "The Pampered Princess got her spinal tap around midnight , it went well and we should now results Monday. This afternoon noon she will have MRI, her VNS implant will be turned off for 2 hours, please pray she can get thru the MRI without seizures occurring."
Update Jan 5: From JoLynn: The Pampered Princess had her plasma infusion treatment, is going to have a spinal tap later today, and an MRI is going to happen tomorrow. The Doctors are still waiting on bloodwork to confirm myasthenia gravis but some testing is making them think another autoimmune disease.. she had 3 neurologists around her bed today and they are puzzled but working on answers. Keep those prayers coming for answers for our girl❤️
From JoLynn: "The Pampered Princess had a good night,they had to increase her sedation due to Miss Fiesty trying to pull on the tubes, she gave her nurse the evil eye everytime she did anything to her… she will receive her 2nd plasma exchange this morning, The Red Cross comes and performs this with this fancy machine that hooks to the port in her neck her blood comes out goes into the machine where it takes the bad antibodies out and puts new plasma back in. Keep those prayers coming she is winning this fight."
Update: Jan 4: The doctors made their rounds. Update from JoLynn: "The team of Doctors came in today The Pampered Princess is slowly improving she will be on the ventilator until at least January 12, she will continue with Plasma exchange therapy, and today she will get some nourishment through her feeding tube. She has a very long road to recovery but we are feeling very hopeful. "
From JoLynn: "The Pampered Princess had a better night last night, she is more stable this morning, she opens her eyes and shakes her head for yes and no questions, they will be doing an echocardiogram today and not sure what else until the team of Doctors make rounds this morning. I am sitting by her enjoying holding her hand."
Update: Jan 3: From JoLynn (mom): "The Pampered Princess (Katelynn Butler) had the port put in place today and received her first plasma exchange, there are so many things going on for our Princess but Doctors remain hopeful they can fix her, she is dealing with pneumonia, the flu type A, blood issues as well as the myasthenia gravis crisis we feel the love and prayers from you all and appreciate it so much❤️❤️❤️"
Wendy's note: Katelynn is 22, not 20 as I previously stated.
From JoLynn: "Todd and I want to thank you for all your prayers, support, and donations you are making our lives a little easier and we do appreciate you all!!! Keep praying and if your Church has a prayer list feel free to add The Pampered Princess to it!!!"
From JoLynn: "The Pampered Princess had a busy night but is more stable this morning, she gave us a big scare yesterday afternoon when they intubated her her heart stopped for 39 seconds but with chest compression came right back, she had red blood cells this morning and more platelets are on the way from Richmond, she has pneumonia but lungs are looking a little clearer so antibiotics are working, she has a lot to overcome but when the nurse tried to do her oral care she tried to fight it, and she opened her eyes when I was talking to her this morning. Everyone keep the prayers going."
From her aunt: "Update on Katelynn... yesterday was a tough day. She is a fighter and we know God is helping her. Keep the prayers coming. If you want to help with tunnel fees, food while Jo Lynn is out of work by Katelynn's bedside, please use Venmo. We thank you for the prayers and support. Keep them coming. She has a tough battle but God provides." If you would like to help out, contact me and I will tell you where to get the QR directly from her family for the Venmo account.
Update Jan 2, 2024: From JoLynn: "The Pampered Princess was unable to have surgery, her breathing is to unstable and her blood count is too low. She is being intubated right now to give her body the rest she needs. She will be receiving a blood transfusion later this afternoon as well. Keep praying !!!"
From Jolynn: "The Pampered Princess has been struggling with mucas, nausea, and keeping her oxygen level above 88, she will go to surgery late morning and the Doctor says we need to be prepared for to go on a ventilator and moved to ICU. Dr Ashe is confident once we begin the plasma treatments we will see progress in 6 days. Please send prayers for her!!"
From JoLynn: "The Pampered Princess had a restful day, still on oxygen, had her 2nd IV infusion, respiratory therapy , and lots of rest. Tomorrow they are going to do surgery to put her port for her plasma treatments and the feeding tube. Her color has improved and her arms are strong , it’s a slow process but she is a tough little lady. Hoping 2024 will soon be filled with good times."
Update Jan 1, 2024 8 a.m.: Update: From JoLynn: "The Pampered Princess had a better night, she is able to whisper this morning “I want to go home” , today she will with get a feeding tube or the IV port in her neck for her treatments. The Butler Boy took care of her last night so I could get some rest, thank you all for your prayers."
Update Dec 31, 8 p.m.: The Pampered Princess has completed her first of 5 IV infusions, with no complications , she is resting calmly, her cough and drainage has improved praying a restful peaceful night. Thank you for all the prayers , love, and support!! Happy New Year!
Update: Dec 31, 2 p.m.: From JoLynn: "The Pampered Princess' (aka Katelynn's) Doctor has a plan to get our Princess back to herself but she has a long journey ahead, she will begin IV infusion treatment today, Tuesday will be getting a feeding tube as she can not swallow, after infusion treatments are complete she will have to have a treatment to clean the bad antibodies from her blood, We expect to be here 2 to 3 week. Thank you for all your prayers and support."
Update: Dec 31, 8 a.m.: From Joelynn: "The Pampered Princess had a rough night but is considered stable this morning. We should see the neurologist sometime this morning praying for some answers to this excessive mucus, she is unable to swallow any kind of liquid or food, her seizure medication has been changed to IV form and not all of it converts so the dosage has been changed to accommodate, she also is on oxygen, her oxygen dropped to 37% last night during a coughing episode it took 2 teams of Doctors and nurses to get her stable, please keep praying!!!!" Katelynn's nickname is the Pampered Princess.
Update Dec 31, 12:30 a.m.: Prayer works! God made a way where there was none. She was admitted to the regional children's hospital. It was the insurance company that was fighting her admission due to her age. Please pray for quick answers, treatments that help, and rest for all of them.
Dec 30, 7 p.m.: Please pray for my friend JoLynn's daughter, Katelyn. She is a 20-year-old woman who was brain-damaged from seizures after her 6-month vaccines. She has the mental capacity of a 2-3 year old. She has been rapidly declining over the last few days. They thought she had Myasthenia Gravis but are now questioning that diagnosis. Because of her age, the children's hospital does not want to admit her, but due to her mental capacity, it is the only place she knows and feels comfortable. All of her doctors are there. They have cared for her since the seizures. The insurance is fighting admission. They are battling right now to get her admitted. She needs IVs because she can no longer swallow easily. She has lost her ability to walk and chew food. Even liquids are causing her to choke at this point. Thank you all for praying.
