Jesse and Nevaeh medical and travel cost
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Travel to and from Milwaukee Wisconsin (4-5 hrs one way) has always been Jesse's life with a multitude of care from many different specialty departments at Children's Hospital of Wisconsin. Many of times we asked to have Jesse evaluated for the autism spectrum due to his hightened awareness to sensory, always being told he was just a behavioral child!
In the end of 2019 Jesse began complaining of more headaches, pain in his frontal lobe along with his eyes being blurry, his behavior was getting worse and he was waking in the middle of the night screaming out in pain! Jesse was accessed at this point by a geneticist who diagnosed him with an autoimmune deficiency and sent us for an MRI of the brain. On Feb 11th Jesse went in for his MRI, the following morning he had a routine sinus procedure. We arrived and got prepped for the OR, Jesse was in surgery 15 min and the doctor came out in scrubs. Something was not right, this doesn't happen! We have this procedure every 6 month and it takes 30-45 min every time. I know this like clock work, a mothers worst fear has come over me! What is wrong with my baby? Jesse's MRI has revealed excess pressure on his brain, and because of this they have had to halt surgery and ask my permission to continue!
In the days coming Jesse would be diagnosed with primary Idiopathic Intracranial Hypertension AKA Pseudotumor Cerebri (meaning a false tumor on the brain) and secondary Empty Sella ( a missing or dysfunctional pituitary gland)! There is NO cure for this. Pseudotumor Cerebri has a 1:100,000 chance of occuring and usually affects women of child bearing age who are overweight! The chances of a child getting this is even more rare and at least 60% of them are over the age of 10 and female, leaving Jesse in an EXTREME RARITY! While this on its own will not lead to death it can lead to a lifelong of medical problems since it is not curable and the body fights it as if it is an actual tumor, in most cases pseudotumor will lead to blindness.
As the year progressed we tried many medications and had a lumbar puncture to drain any excess fluid off the spine. Jesse's behaviors have worsened, headaches are still prevalent more migraine style, sensory problems have become debilitating, very extreme sensitivity with light and sound, more complaints of vision problems along with developing weakened muscles in his tongue causing delay in swallowing and stacking of food and drinks in his throat leaving a constant sensation of choking and a phobia of food.
In December 2020 Jesse was diagnosed with MRSA in his eye! Due to his compromised immune system Jesse has always been more susceptible to infection and illness so this was not a great surprise, more a fear of the location! After a 5 days inpatient we were able to come home with an extensive follow up planned with all providers the week of christmas. By the time these appointments arrived Jesse wasn't eating very well, we had started a journal of his intake which showed slow worsening of both solid and liquid intake! As Dec turned to Jan, Jesse lost an accumulation of 11 lbs and was now completely refusing to eat and drink by mouth. Per consultation with our medical team we decided the best course of action was to arrive at children's hospital in Milwaukee for an extensive inpatient stay to determine why Jesse would not eat or drink. On Jan 28th 2021 our stay would begin with no end in sight and only the daily plan of more testing and a complete work up of Jesse's brain body and blood would take place.
By Feb 1st we had virtually no answers, all we knew at this point is that Jesse was heading to the OR to have a NG tube bridaled into his nose for feeding and drinking purpose as well as going to have a repeat Brain MRI and Lumbar Puncture to check for increased cranial pressure! On the evening of Feb 1st we found out that despite a year of treatment with medication and weight loss Jesse's Pseudo Tumor was not getting any better it was actually getting worse! At this point we have drained spinal fluid to help decrease headaches and pain along with changing and increasing or decreasing multiple medications with Jesse since being inpatient, causing worsening sleep deprivation , behavior problems, and anxiety.
On the evening of Feb 4th our entire world turned upside down! Jesse had not slept for 5 days and the doctors decided to add sleep aide to his regimen for bed. At 9 pm Jesse was given trazodone, at 1030 pm he was given hydroxyzine, at 12 midnight he was given zyprexa and then given a repeat dose of zyprexa at 2 am. By 3 am Jesse was in complete hellucinations he had thrown himself out of bed had become completely combative. The light poles and stacks on buildings were airstrikes and bombs, every string or seam was a worm snake or caterpillar, he had ripped his NG tube out, the cuts he put on us were fire ants, there were scorpions peeing on us and lizards putting tongues in mouths. Beginning at 5 am the doctors began giving Jesse more medication. He was given ativan at 5 am benadryl at 6am security had to come and put Jesse in 4 point restraints by 7 am and another dose of benadryl was given. As per diagnosis from mental health Jesse was put into a medically induced AUTISTIC PSYCHOSIS by being given too much medication! Jesse finally slept from 2 pm on friday the 5th till 7am on Saturday the 6th!
On Monday Feb 8th we were sent home still having hallucinations of bugs being on us, in us, and in our food or home. We were told by children's hospital Milwaukee that Jesse was a behavioral child who needed help and that we were to ignore his behavior, tell him the bugs were non existent and to punish the behavior. All that did was upset him more and scare him that we couldn't see what he could see! Still to this day he is having hallucinations, not sleeping alone, won't wear shirts or sit in the back seat of a vehicle, won't cover up with blankets, or eat food that resembles bugs, is scared to climb the stairs and noises or vibrations make him collapse in fear. We do not have the same child today that we took to the hospital on Jan 28th 2020.
Because of Jesse's Pseudotumor Cerebri (which in small terms means Jesse has a false tumor on his brain that his body is treating as if it was real and it will never go away) not getting any better with treatment and worsening we have been asked to receive a 2nd opinion. However for that 2nd opinion the team of doctors is located in Pittsburgh PA and our insurance will not pay for it. This cost for the appointment, travel, food and lodging will be completely out of pocket and raised through fundraisers. Aside from this travel we also have to go to and from Milwaukee Wis 2-3x a week along with therapy and appointments locally and in Green Bay Wis 2-5x a week. All funding raised here will be used to obtain a 2nd opinion and give Jesse a hope for a more normalized life. Along with travel, food, car maintenance since Jesse can not fly and bills at home since he is required to have round the clock care at this point. We are also able to take donations on paypal [email redacted] as well as creating a tshirt/hoodie fundraiser if you would like to purchase please do so
Thank you all for your time and consideration this is something we are working to get completed as soon as possible, Jesse's best hope at a great life will be influenced by this and we will update often please share and get our son the help we need.
In the end of 2019 Jesse began complaining of more headaches, pain in his frontal lobe along with his eyes being blurry, his behavior was getting worse and he was waking in the middle of the night screaming out in pain! Jesse was accessed at this point by a geneticist who diagnosed him with an autoimmune deficiency and sent us for an MRI of the brain. On Feb 11th Jesse went in for his MRI, the following morning he had a routine sinus procedure. We arrived and got prepped for the OR, Jesse was in surgery 15 min and the doctor came out in scrubs. Something was not right, this doesn't happen! We have this procedure every 6 month and it takes 30-45 min every time. I know this like clock work, a mothers worst fear has come over me! What is wrong with my baby? Jesse's MRI has revealed excess pressure on his brain, and because of this they have had to halt surgery and ask my permission to continue!
In the days coming Jesse would be diagnosed with primary Idiopathic Intracranial Hypertension AKA Pseudotumor Cerebri (meaning a false tumor on the brain) and secondary Empty Sella ( a missing or dysfunctional pituitary gland)! There is NO cure for this. Pseudotumor Cerebri has a 1:100,000 chance of occuring and usually affects women of child bearing age who are overweight! The chances of a child getting this is even more rare and at least 60% of them are over the age of 10 and female, leaving Jesse in an EXTREME RARITY! While this on its own will not lead to death it can lead to a lifelong of medical problems since it is not curable and the body fights it as if it is an actual tumor, in most cases pseudotumor will lead to blindness.
As the year progressed we tried many medications and had a lumbar puncture to drain any excess fluid off the spine. Jesse's behaviors have worsened, headaches are still prevalent more migraine style, sensory problems have become debilitating, very extreme sensitivity with light and sound, more complaints of vision problems along with developing weakened muscles in his tongue causing delay in swallowing and stacking of food and drinks in his throat leaving a constant sensation of choking and a phobia of food.
In December 2020 Jesse was diagnosed with MRSA in his eye! Due to his compromised immune system Jesse has always been more susceptible to infection and illness so this was not a great surprise, more a fear of the location! After a 5 days inpatient we were able to come home with an extensive follow up planned with all providers the week of christmas. By the time these appointments arrived Jesse wasn't eating very well, we had started a journal of his intake which showed slow worsening of both solid and liquid intake! As Dec turned to Jan, Jesse lost an accumulation of 11 lbs and was now completely refusing to eat and drink by mouth. Per consultation with our medical team we decided the best course of action was to arrive at children's hospital in Milwaukee for an extensive inpatient stay to determine why Jesse would not eat or drink. On Jan 28th 2021 our stay would begin with no end in sight and only the daily plan of more testing and a complete work up of Jesse's brain body and blood would take place.
By Feb 1st we had virtually no answers, all we knew at this point is that Jesse was heading to the OR to have a NG tube bridaled into his nose for feeding and drinking purpose as well as going to have a repeat Brain MRI and Lumbar Puncture to check for increased cranial pressure! On the evening of Feb 1st we found out that despite a year of treatment with medication and weight loss Jesse's Pseudo Tumor was not getting any better it was actually getting worse! At this point we have drained spinal fluid to help decrease headaches and pain along with changing and increasing or decreasing multiple medications with Jesse since being inpatient, causing worsening sleep deprivation , behavior problems, and anxiety.
On the evening of Feb 4th our entire world turned upside down! Jesse had not slept for 5 days and the doctors decided to add sleep aide to his regimen for bed. At 9 pm Jesse was given trazodone, at 1030 pm he was given hydroxyzine, at 12 midnight he was given zyprexa and then given a repeat dose of zyprexa at 2 am. By 3 am Jesse was in complete hellucinations he had thrown himself out of bed had become completely combative. The light poles and stacks on buildings were airstrikes and bombs, every string or seam was a worm snake or caterpillar, he had ripped his NG tube out, the cuts he put on us were fire ants, there were scorpions peeing on us and lizards putting tongues in mouths. Beginning at 5 am the doctors began giving Jesse more medication. He was given ativan at 5 am benadryl at 6am security had to come and put Jesse in 4 point restraints by 7 am and another dose of benadryl was given. As per diagnosis from mental health Jesse was put into a medically induced AUTISTIC PSYCHOSIS by being given too much medication! Jesse finally slept from 2 pm on friday the 5th till 7am on Saturday the 6th!
On Monday Feb 8th we were sent home still having hallucinations of bugs being on us, in us, and in our food or home. We were told by children's hospital Milwaukee that Jesse was a behavioral child who needed help and that we were to ignore his behavior, tell him the bugs were non existent and to punish the behavior. All that did was upset him more and scare him that we couldn't see what he could see! Still to this day he is having hallucinations, not sleeping alone, won't wear shirts or sit in the back seat of a vehicle, won't cover up with blankets, or eat food that resembles bugs, is scared to climb the stairs and noises or vibrations make him collapse in fear. We do not have the same child today that we took to the hospital on Jan 28th 2020.
Because of Jesse's Pseudotumor Cerebri (which in small terms means Jesse has a false tumor on his brain that his body is treating as if it was real and it will never go away) not getting any better with treatment and worsening we have been asked to receive a 2nd opinion. However for that 2nd opinion the team of doctors is located in Pittsburgh PA and our insurance will not pay for it. This cost for the appointment, travel, food and lodging will be completely out of pocket and raised through fundraisers. Aside from this travel we also have to go to and from Milwaukee Wis 2-3x a week along with therapy and appointments locally and in Green Bay Wis 2-5x a week. All funding raised here will be used to obtain a 2nd opinion and give Jesse a hope for a more normalized life. Along with travel, food, car maintenance since Jesse can not fly and bills at home since he is required to have round the clock care at this point. We are also able to take donations on paypal [email redacted] as well as creating a tshirt/hoodie fundraiser if you would like to purchase please do so
Thank you all for your time and consideration this is something we are working to get completed as soon as possible, Jesse's best hope at a great life will be influenced by this and we will update often please share and get our son the help we need.
Organizer
Ashley Groleau
Organizer
Gladstone, MI
