- J
Hello,
Our names are Shane & Josie Odell and we are the proud parents of 3 beautiful girls!
We have never done anything like this but feel that it's needed for providing our youngest "Charlie" with the best care we can provide in search for answers, care, resolution as well as financial relief. We have always been a family that tries to put all others before ourselves and give back to our community in anyway that we can so that makes this extremely challenging for us to be in this position and vulnerable enough to ask for help.
Child Medical History: Present day, our youngest daughter Charlie Ann Odell, took after her oldest sister and broke the record for intussusceptions among our household. Now over 4 years old, we have landed back in the hospital for the 4th time for her intussusceptions. Each visit costing anywhere from $20,000-$50,000.
When our oldest daughter Lyla was only a few years old, we were extremely concerned, as any parent would be, when she was overcome by extreme lethargy, motionlessness, along with a lack of communication. She had been dealing with a, somewhat minor/common viral bug days prior, when suddenly her condition drastically changed and we immediately knew we were dealing with a serious emergency.
Upon arrival to the ER and being rushed back to start IV fluids, it didn't take long for everyone to be confused with what was happening to our daughter. Talks of possible UTI, stomach bug, etc. didn't fit the narrative of being overcome by her symptoms in such a short amount of time while still consistently consuming liquids up until she became non-responsive. This was until, our doctor asked a separate ER Dr his opinion, who had a hunch to run an ultrasound and check for intussusception. This would be our very first time hearing the word... but definitely not our last run-in with intussusception in our children.
Lyla would go on to have 2 more intussusceptions, in case studies they refer to these as recurrent intussusceptions.
We have many questions regarding the circumstances our daughters deal with internally. This last intussusception for Charlie had all the same proactive signs/symptoms, but post-procedure, she is facing far more obstacles then her previous ones along with some unfamiliar post procedure symptoms to us. We have had to completely adjust our lives to try to understand and reduce the risk of an episode with our daughters.
We have been through the highs and lows on this journey. We are currently at the lowest we've been with little answers. We own/operate a small business, which takes up most of our time while raising 3 absolutely amazing daughters. Our hospital visits have left us with an immense financial burden along with many other unfortunate circumstances we've been dealt with as of recent.
We have been financially crippled but we will be seeking out medical specialists "gastroenterologist" as well as any M.D. consultants willing to help further rule out causes/underlying conditions. We appreciate those who take/took the time to read about Charlie and what she's been going through, as well as Lyla and her journey. We will continue to stay optimistic in our family and in our faith, for we have been blessed and continue to be blessed.
Any and all donations to Charlie's GoFundMe will go towards past, present and future hospital/specialist bills, providing time for both Mom and Dad to be there with Charlie during the necessary testing the specialists will be performing to hopefully rule out any underlying causes, diseases, abnormalities, etc that could potentially be effecting our babies quality of life, as well as, help with bills and necessities needed around the house.
If you are interested in learning more about intussusception and our experience in length, we have provided further details along with a link to better understand the condition!
The symptoms to look for in intussusception can drastically fluctuate depending on the child, but are vastly taught as; intermittent abdominal pain lasting a few minutes 15-20 minutes apart, blood in stools, loss of appetite, lethargy, with the abdominal pain being one of the first signs to look for... Not in our case...
2 out of our 3 girls, both with recurrent intussusceptions, 7 incidents in total, only 2 were accompanied with verbalized/noticeable abdominal pain, which would be a symptom developed 24-72 hours after arrival at the hospital, pre procedure. There early onset symptoms were; quickly developed lethargy alongside extreme dehydration. They would quickly result to sleeping all day, experiencing zero appetite or ability to drink water. The water they did consume would not be nearly effective enough to combat what's taking place inside their bodies
We have read the case studies and we have learned our children's warning signs/symptoms. We've been on high alert for 6+ years and ready to react at a moments notice.. We have taken preventative actions like keeping Charlie out of Pre-PreK & Pre-School to mitigate risks of flu/illnesses triggering a reaction in the described "high risk age group", along with skipping family events when someone has been sick, large crowd/events, etc...
We have walked on eggshells around intussusception while still allowing our sweet girl to have a social life and be a kid, but the fear is always lingering over us. This knowledge of Charlie and Lylas early signs of intussusception does not come without it's downside... The more you dig in about the medical condition, the more you learn about the proactive approach on looking for intussusceptions vs the reactive approach which can hinder the prevention of severe issues related to this emergency.
This proactive approach has had us treated like the "crazy" parents by certain medical staff/hospitals who viewed us as "overly worried". They would often undermine our understanding of the whole thing before later symptoms occured days after our arrival with the medical staffs plan to discharge us. Ultimately, this has even lead to emergency medical transportation to our preferred hospital, for the current hospital could not operate on intussusceptions after finally checking to confirm our concern for intussusception.
Charlie's very first intussusception, followed by another, 17 hours after her first reduction, was an absolute nightmare. We drove to the nearest hospital when extreme dehydration was present. IV fluids were the main priority at the time of Charlie's first intussusception.
It took 72 hours for the right nurse to come on shift and acknowledge/advocate for the reason we went in the first place. She went above her doctor and chain of command to make sure we were heard, resulting in a report from our nurse and charge nurse about our pleas for an ultrasound to rule out intussusception. The director of the hospital reached out to us personally about the negligence and the way we were treated/lack of medical care received.
By the time medical transport had arrived to take Charlie to our normal hospital, she started to burst into tears, screaming and clinching at her stomach. We are forever grateful that we trusted what we learned and didn't let them send us home before testing. Some children are not as fortunate as ours have been with immediate diagnosis, resulting in severe complications and death.
We will say, it is well known amongst the medical field as well as ourselves, that intussusception is very tricky to not only diagnose, but for radiology, nursing staff and surgery teams to monitor. That being said, we know our kids and advocate for them as any parent would do and luckily the majority of the staff have known us for a long time at our preferred hospital and they know that when we come in, there is a 95% chance that there is an intussusception to be found on an ultrasound. The radiologist and surgeon team have treated both our girls with so much professionalism & care and they follow our cases closely. We are forever in debt to them and the amazing nurses for all they have done for our girls!
Thank you for your time!
Sincerely,
Charlie's Mom & Dad
Organizer
