Jocelyn’s Story

Site created on April 28, 2018

Thursday 26th
So Jocy has been sick for the week,she had her vaccines on Wednesday the 18th, started mild fever Friday evening, progressed to a fever and headache Saturday evening, Sunday evening her jowls got puffy-these are all mild symptoms to her vaccines. Sunday in the night her jowls and under her chin got massively swollen and seemed to have a hard time breathing so I brought her to ER..she had a positive strep but doc felt that we should not doing an antibiotic, because she already had moderate vaccine reaction but there trying not to treat all strep unless they develops the rash a few weeks later, then it’s the type to be treated for scarlet fever and heart complications-he didn’t want to add to her burden. Monday she fevered and had a belly ache, Tuesday she was throwing up-5/6 times total stopped at 5pm but fever broke round 11am and I conferred with the doc all day. Said to keep hydrated... she’s on the mend and should be just fine! This sweet little her legs and arms started swelling and were terrible painful so I brought her back in last night...They did labs, blood, swabs, IV, morphine... they admitted her, she tested positive influenza A. It’s been over 24 hrs since her fever broke but She got a rare symptom of the flu, or the strep? She has rhabdomyolysis. Rapid break down of the muscle tissue, swelling and horrible pain. Normal high number is 250, hers was 10,000, went to 17,500. And climbing.. So IV fluid, to flush it all out, her kidney function is healthy and normal but not doing working properly..? He sent blood to a special lab waiting on results a few days. He wants to do tamiflu, to try to lower her levels. He also wants And antibiotic. He feels like she got this so bad because she was sick and layed around for so many days.. she is so miserable it breaks my heart! Say a little prayer for her!! 


Update 1: Thursday 26th
Everything everything keeps elevating and not flushing, she's getting sicker, they sent her to children's in Denver.. please pray for her! Curtis went with her.. docs were optimistic that she would be good as new in a week or 2.. please, please, pray for us! And my sweet Jocy girl!!


Update 2:Friday  27th early morning 
 Her kidneys are not reacting like they hoped. They are putting machines on that act as her heart  and lungs and kidneys. She needs her blood cleaned and oxygenated and it’s risky to do, but they need to do it. It requires surgery. It’s all in God’s hands and Gods will be done. She is in excellent care here. 


Update 3: Friday 27th
Surgery to implant IV’s went well and she is now on the “machines”. Bypassing her heart and lungs and using dialysis to clean her blood. Her heart and lungs are fine, they just need to be in control of pumping and oxygenating her blood so they can put it through the dialysis machine. 
Ecmo is the name of the heart and lung machine.  Crrt  is the name of the dialysis machine.
Just to be clear they are not completely bypassing her heart and lungs. 20% usage. 


Update 4: Friday 27
 Talked to the pediatric kidney specialist. He said he is cautiously optimistic that she will be just fine. He has seen this almost exact same thing in a 16 year old girl that was also very healthy. She got the flu and this same thing happened. The vibe I got from him was very good. He is a German doctor and made me almost giggle with his accent and he used the term knuckleheaded! He also said her potassium level was at 7.1!!!!!! Very dangerous level. 


 Update 5: Friday 27 afternoon
 She was septic, she is in critical condition on life support. She is a very sick little girl... so many prayers are needed here.


Update 6: Friday 27 late afternoon
 She can be on this unit for days, weeks.. until her infection is gone and her organs are working right. The doctors say she has shown a little improvement and they are optimistic, this is the best place she can be. Her lung function is good, kidneys are working. Heart is very stressed. He was very blunt said he’s not going to sugar coat it, she is very sick and right now she has a 50/50 chance.. just because with anyone in ICU there are risks with using these machines. but he definitely is optimistic and he has seen worse. So that being said.. please oh please pray for her!!! I’m so thankful for these doctors.. without them she would be gone!
God has placed Precious Christians here in Denver for us! It’s so strengthening to have them here! Thank you so much for your thought and many prayers.. your offers of help, it’s so humbling and we feel so weak. But we are not alone and we have such a strong God, we know he will take care of us her and our children at home! Please, please continue to pray that that we can accept Gods will for our little girl. We feel like our time with her has been so short but so precious! 


Update 7:  (this morning) 
She had a good night and she is showing slight improvement, so there going to start lowering her life support and see how she does. They feel like her heart is strong and healthy and will do an ECO to make sure she tolerates the change. They are going to increase her fluid intake so her sick little kidneys will keep flushing, their discussing a few options to help her flush the proteins from the rhabdo because her levels are so high there unreadable. Please continue To pray


Thank you for all the thoughts and prayers! Please continue to pray for us! Love, the Wendling family


Curtis & Robin Wendling
P.O. box 889 
Moorcroft, Wy 82721






 

Newest Update

Journal entry by Robin Wendling

It’s hard to know where to start! 
Jocelyn is doing pretty amazing considering! To see her you’d never know she was so sick with so many complications. 
-We have seen many doctors, had many tests done and have gotten alot of new information. 
-Her metabolic and genetic tests are all perfectly normal! Her CK levels went back to normal levels! Excellent news! 
-Blood pressure is normal now with no meds!
- she has been done with Physical therapy appointments for awhile now.. but still continue at home. She has ended up wearing her foot braces still,  which is way way longer than anticipated! And may need to wear them for  awhile longer, we will have to see. We have tried to stop using them many times over the months and her leg muscles get tight again, she has trouble walking in the morning and they get tired by night, it effects her whole day and she is terrible crabby! Her doc is not concerned, (this is a different doc that took over her care because her wonderful doc moved, she has a lot of experience and her daughter has recently had rhabdo in her hip from running!) I wish they would do a follow-up Blood check and make sure nothing is elevated.  I think I will be forever overcausious!
-We had some testing done to see if she has any damage from all of the medication and vaccines. Her liver is pretty bad, heavy metals etc, so we are slowly doing detox and support. 
- So for the new info, I talked to her ER doc and her pediatric doc in Gillette. Just to go over what may have caused all of this.. to prevent any possible future reaccurance! They all feel, that it was all directly related to her vaccines. Her Doc at Children’s said the same as well. For the CK -rhabdo-levels to be so high when we brought her to ER, it started with the moderate vaccine reaction. The swelling in the muscles around her cheeks and throat. Not the flu as initially suspected. Although the flu on top of it may have made it worse.  With her immune system compromised, she got the strep and the flu. Then got sepsis, had heart failure, kidney failure from the rhabdo. So her systems were shutting down. The respiratory failure it turned out was not caused from an infection (the pathogen they found and cultured  never revealed anything) it wasn’t phenmonia, but was very possibly and probably caused from a food allergy to 2 of the foods in her liquid meal replacement given in her feeding tube. Apple and Strawberry. A respiratory IgE food allergy blood test confirmed this.  After we turned off her feeds she had stabilized within 2 hrs. She would have had this severe reaction because she was getting the foods constantly, not just once or twice a week or month as she normally ate them. Class 6 allergy on this test being anaphylactic, she was a class 3. So she might get a stuffy nose or a 2 day cough from eating the foods occasionally, but would have severe respiratory reaction when getting them for the 15 hrs she was slowly getting them! Turns out, there are many types of allergies and many types of reactions. We are so thankful to have many wonderfully educated doctors and tools to help heal her! We have been very blessed!
-So at the time of her next vaccinations..going into 7th grade,  her doctors feel that if the benefit of her vaccines outway any possible risk, then we will very cautiously proceed with one dose of a single vaccine, one at a time and wait 2-3 month to give the next. Of course I’d like to run the other way and say no way! But I have to believe our Doctors know what they are doing and I have faith in them!! There will be no flu shots. Her Doctors at Children’s felt that if she would have had the flu shot for that season,  she would have been compromised before she got her vaccines and she wouldn’t have even made it to Denver. They are afraid that the flu shot might mimic her past reaction when she had the flu when she was so sick?! And possibly have a similar reaction or trigger the Rhabdo again... no thanks!! 
-They will also be cautious with the other kids and follow a different vaccine schedule that is safer with less possible reactions, as some of them have had mild reactions already. We’ve also run allergy tests on the rest of the family. 
- She has a little PTSD or post traumatic stress disorder. Which is to be expected with her experience! Also some troubles crossing right brain/left brain. We have some excercises and energy work to try to help with this. So to describe this...? Jocelyn was really having trouble focusing, staying on task and would totally shut down at any negativity or being told no or asked to do something etc...symptoms of autism spectrum. Her physical therapist asked if she had symptoms before.. no, she had none. She had Jocy write her name, which she could do really well before she was sick,but this time,  she wrote it backwards! Completely backwards! So PT tested her on other things as well. She explained that your Corpus Colosum in your brain crosses over, or ‘crossing the mid line as some may recognise’ in certain circumstances they uncross, causing behavioral disorders, so we do a series of exercises to retrain her to brain to cross again! It’s pretty fascinating! And very effective! We really noticed when school started, it was a terrible experience! At home she felt safe and we knew how to control her environment! But to go to school was very hard! Some separation anxiety also. Once she calmed down and went to class she did fantastic! The first few days were ok.. then she refused the bus. So she rode with Aurora. Then she wouldn’t get out of the car,  then we had to force her in the car, carry her to the office, going through a complete breakdown, kicking screaming, flailing and wild eyed. Was almost more than we could handle, I /we just wanted to scoop her up and run away with her, this just didn’t seem right at all! The principal or counselor would hug her.. and give her gum, while Aurora-her big sister- or I left. I’d sit in the car and sob! Or Aurora would call sobbing! But within 10 minutes her principal would call and she was happy and fine and in class! They would check on her during the day. This went on for weeks! Getting a little better each week! With the help of a dear friend we finally tricked her onto the bus with gum! Her daughter would bring Jocelyn gum in the morning! They are great friends! Gum seems to be the ticket! She has been doing really well this last month! Ups and downs to be expected!
Please continue to pray that she never has a similar reaction! And that we can accept God will if she does! 
God has been Gracious, He has given our family much strength and many dear friend and helpmate on this road. Many heart felt thanks go to God! 
Many fervent thoughts and prayers to our family and friends that have been under heavy trial these last few months also! We have a strong God! Thy will be done..He will take care!
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