March 24th, he was taken to the ER due to blood in his urine and pain on his side, at Lower Bucks Hospital he was diagnosed with Polycystic Kidney Disease, two bleeding cysts and a kidney infection. He was sent home with antibiotics for the infection. Later that night he started acting out of character, by the next morning he could hardly walk and had no recollection of being diagnosed with the kidney disease the day prior. After another trip to the ER and a 911 call later that night, he was finally admitted to the ICU, he quickly declined to the point of being unresponsive.
After numerous tests and another MRI, it showed two small white spots on his brain. Doctor after doctor came in and said none of what he is experiencing has to due with the Kidney disease he was just diagnosed with. After over 24 hours of waiting for a Neurologist, he looked at the MRI results and took not even ten minutes to decide that Jason needed to be transferred to a better equipped hospital.
The next morning he was taken via helicopter to the Neurological Intensive Care Unit at Jefferson Hospital in Philadelphia, Pa. that’s where he stayed for 5 weeks fighting for his life. Once there, another MRI showed that the spots on his brain had now spread rapidly over a large portion of his brain in such a short time. By the 28th of March he was diagnosed with a very rare Brain Disease called (ADEM) Acute Disseminated Encephalomyelitis this disease causes swelling lesions on the brain and can be fatal.
Jason’s was immediately put into an induced coma to stop any stimulation to his brain. A monitor was drilled through his skull to show his level of intracranial pressure/swelling on the brain. He had to be kept in the same position, sitting up, in a coma for 3 weeks, any movement and his pressure went up to dangerous levels. He developed Pneumonia, blood clots in his right leg that traveled above his knee. He had severe issues with blood pressure and temperatures, he needed a special cooling system to keep his temperature under control. He had 3 racks of medications being pumped into him. After two weeks he was at risk for infection due to breathing and feeding tubes so a tracheotomy and GI (feeding) tube surgeries had to be done. He received a treatment called IVIG over the course of a few days along with extremely high doses of steroids.
Jason’s case of this rare disease quickly became the worst they have seen. But the doctors at Jefferson Hospital saved his life. They started to lower the coma medications and it took another two weeks for Jason to come out of the fog he could not do anything but stare but we knew he was fighting. We had no idea what we where facing, he would not follow any commands for the doctors.
His last MRI showed no more active lesions on his brain and some leftover swelling, the doctors could not say if there would be any permanent damage but that a large part of his brain was impacted and he would most likely have nerve issues.
By May 6th, his son, Jordan turned 3 years old while his Daddy was in the hospital. Jason finally became stable enough for us to start looking at rehabilitation centers. After much debate on whether he was ready for a aggressive facility with more therapy or a nursing facility, we finally decided that Moss rehab in Elkins Park, PA was where he was going. He was immediately started with Physical, Occupational and Speech therapies 5 times a day. Jason is on his 3rd week there and is making amazing progress, he went from not being able to sit up or move his arms to now feeding himself 3 times a day, standing, and walking with less and less assistance during physical therapy. His tracheotomy tube was taken out and his feeding tube is due to be removed this week. (they kept it on at night to continue giving him more nutrition since he lost close to 80 lbs) He is speaking normally now and finally saw his son this past weekend after two, very, very long months.
Jason is making major gains at Moss rehab in just three weeks despite his severe brain disease that almost took his life and we could not be more happy at his progress. But an EMT report showed he indeed has the Muscle and Nerve disease the doctors suspected due to the large amounts of meds during the coma, and although those diseases are not permanent. They take months to heal and makes his recovery process to complete independence that much harder.
The right side of his body is stronger then the left. Due to the muscle disease he can not yet life his arms up past his head. He uses a wheel chair as he is not yet strong enough to walk on his own. It is likely he will face some effects of Traumatic Brain Injury (TBI). One side effect we know he has is short term memory loss. Insurance only gives so much time at this facility and it is unknown whether he will be able to come home in the next few weeks or need more time in another facility, we are leaning towards home tho if we can manage to keep it financially. He will definitely need outpatient rehabilitation either way and special equipment once he is home.
If you are able to donate, it would be greatly appreciated. See this link for his online recovery fundraiser - https://www.youcaring.com/medical-fundraiser/jason-s-recovery-fund/184689
*For more information about his Brain Disease, ADEM see http://en.wikipedia.org/wiki/Acute_disseminated_encephalomyelitis
*For more information on IVIG treatment see
http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
*To learn more about the Muscle and Nerve Disease see these links-
Myopathy Disease - Muscle
http://en.wikipedia.org/wiki/Myopathy
*Neuropathy Disease - Nerves
http://en.wikipedia.org/wiki/Critical_illness_polyneuropathy
If anyone read that far, I apologize for the grammar issues. I kept a journal and a log of what happened everyday I tried to write this as straight to the point as possible without my thoughts thrown in, figured I'd save that for another post.
PS.
This is actually the short version, if anyone stumbles upon this post looking for info for a loved one or dealing with this same disease ADEM or Autoimmune demylenation, let me first say, my heart breaks for you, I am so sorry. but I would love to exchange more information if intrested.
Emily
No comments:
Post a Comment