We hit the worst lottery in the world so to speak. Something like 8 other people in the U.S. had the same Brain disease that Jay did. It is still so crazy to me. We are still dealing with the after effects of such a severe illness. Not only his physical and mental after effects, which for what happen to him, we truly are lucky but on the other hand this has completely turned our life upside down and continues to every single day.
Social Security actually denied him, mostly because he is under 50 years old. So we are in the process of appealing the denial, we have a lawyer that will that will take a nice big chunk of money once this is all over with. However, we are still looking at up to a year until we can get a court date. I am looking for a job. Every single month since this has happen we are worrying about where the next rent payment will come from and at one point we even got a notice threatening eviction for not being able to pay for two months right before the holidays. Luckily Jay has a pretty amazing Aunt and Uncle who helped us out, I will never be able to express my gratitude to them for helping us through the Holidays and keeping a roof over our son's head... no words can explain it...
Things are still so tight, Jay wanted to go back to work but it is just not a option. I am looking diligently, at this point I will take anything I can get. Life continues to be a big struggle. We really hit the lottery of all lotteries.
Here we are now in a fresh year, January 2015. Hard to believe it's less then 3 months since this all started a year ago. 2014 flew by, it also dragged by, it was.... just horrible and I am SO glad it's over! I've been thinking alot about this upcoming year, goals, resolutions, changes and a million things I want to do. I'm starting it with one word - Redefine. That's my word for 2015 and what I will try to apply to everything I do. I started early by getting rid of my Facebook account. It's been about 7 months without and the only thing I miss is occasionally sharing pictures of our son but I figure the people who really care for us will keep up with us in person. I just needed to focus on our life and not look at everyone elses.
The one and only good thing that came from this past year is what I learned, I cannot live without a journal, maybe even a few journals. I must write, I have to get it out, good and bad, it needs to come out on paper. A planner, I must have a planner to keep up with all our appointments so I don't forget, there is just something about having it written in pen on paper that I love as opposed to using my phone. In 2015 I would like to utilize my planner on a more personal level, plan out things other then appointments but also daily schedules, me time, etc. I really want to use it to help "REDEFINE" my life. I recently picked up a copy of the book The 7 Habits of Highly Effective People by Stephen R. Covey, I hear it is a great read and I found it at the Goodwill for 45 cents, I was thrilled and I'm hoping it can help me get a jump start!
Also, Art. Above all, in 2014 I learned I MUST have a creative outlet, I NEED to paint, it is essential for me to stay sane. It is truly like meditation for me and I must do it, I even feel frustrated when too much time goes by and I haven't created anything. So, those are some of the things I learned about myself through all of this and I am grateful I did. I don't know what the future holds but I know I don't plan to stop writing, planning and painting any time soon. Who knows, maybe I can start a blog about my new artistic adventures? Maybe!
Hello! if anyone read this, I'm Emily and I hope you'll stick around if this interests you.
Much love to anyone going through the struggle of life, Emily XOXO
Monday, January 12, 2015
Tuesday, June 10, 2014
How am I going to do this!?!
I'd be lying if I said I wasn't scarred... scarred that Jay is coming home in one week, on the 17th. He is not fully recovered, he needs assistance with a lot of things. However, from where he was a month ago to where he is now, it's truly unbelievable. He went from not being able to move at all to actually walking now with some assistance, the therapist got him walking to the point of just needing hands on him in-case he loses his balance. He can't walk for a very long distances, the endurance is not fully back either but he CAN freaking walk, talk and makes sense, feed himself, thank goodness! Yes, all those little things that the doctors couldn't tell us or doubted he would be able to do, he IS. How far he has come is truly remarkable. I am beyond grateful.
He is still extremely weak, because of the muscle and nerve damage, those things takes a very long time to heal. His body is kind of stiff and tight, he can't move like he use to. Today I was watching him in physical therapy, his exercise was to get onto to the floor from his wheel chair and get back up. He did it, he always doese whatever task he is asked to do but it was by no means easy for him. As I watched him, I saw a look of pain rush over his face, he said it didn't hurt but he wouldn't admit it if it did.
The other day his speech/cognitive therapist, had me draw the lay out of our apartment to prepare him for coming home because he could not remember it. He remembers older memories just fine but newer ones, that mostly consist of our life together as parents, are not there. A month ago when he first got to the rehab, he knew who Jordan was because we hung pictures of them together all over every hospital room he was in, he knew he was a Dad but could not remember it. I would show him a picture and ask if he remembered the day, he couldn't. It took everything in me to not cry in front of him and sometime I would just have to walk away. But as I drew the lay out of our home for him, little memories started to come, like when we would take Jordan for walks as he was learning his ABC's, he would look up at each building, point to the letters and shout it to us. He remembered we picked a jungle theme for Jordan's room when he was born, he remembered the colors we painted the rooms. Today, when I asked him again if he remembered what our home is like, he did not.
It makes me so mad, for those memories to be taken, it just hurts. Of course I know it's not his fault, it is a result of this horrible rare disease that we got so lucky with. Supposedly the memory takes the longest to come back after something traumatic happens to your brain. Memory loss and decision making issues,everyday he is stronger than the day before it's just going to take a long time to get his full strength back but I have no doubt that he WILL. It can always be worse and for that, I am grateful.
I'm still afraid, I don't want to be. I want to stay as positive as I can. I believe staying positive has the most power in life. I did not start thinking this way until a few months before Jay got really sick but I'm glad I did because it helped. Positivity gets you where you want or need to be and truly believing that you will achieve whatever it is that you want/need. Staying positive trumps it all. That's what I tried to do throughout this whole ordeal,I tried my best. I would do things like made sure Jay had an outfit ready to change into in whatever room of the hospital he was in, and shoes so he could be ready to get up and walk out. When I took the train to Jefferson in Philly, I carried an extra train pass for him to come home with. Hung pictures of him strong and healthy with Jordan. I tried to align everything to be ready as if he was coming home at any given moment. It helped me know we would get through this. Well... that and I drank, more than usual. shit happens.
But that time is finally getting here, Daddy is going to come home just like we wanted all along and here I am getting scarred. I'm scarred of having an amazig, ever changing three year old and his Dad having a disability that will require my help for most things. I have no clue what issues we will face bringing him home, he has been recovering in such a structured, daily routine. I don't do routine besides nap & bedtime and I am not structured, more like a well kept mess! Which one should I get out of the car first? How will I push a wheelchair and shopping cart at the same time? All the freaking paperwork, fighting for social security, the phone calls, the bills and the pile of medical bills, (the one bill I actually opened, was the helicopter transport, Thirty Three Thousand Dollars! I feel like it's just wrong to send a bill like that at a time like this! why can't insurance just tell us they are paid!?) All the appointments to make, getting him to his outpatient therapies, remembering to give him his medications at the right times, home nurse visits, hands on training for Jay that I never feel comfortable doing because I can't lift him, what if he falls? Did I mention we have a three year old? Three year olds are insane! What if I neglect our son? I already felt that feeling everyday that I have left Jordan with a family member since this disease came and knocked us over. But I told Jordan all along Daddy was coming back home and so it became my mission. How do I balance that now? I am truly grateful for the family that helped us and continue to during this time, words could never express it, EVER. Our dreams that we were SO close to reaching of Jordan having a backyard to play in, how long do those dreams have to stay on the back burner? I'm just so damn mad at this disease and what it took. It took Jay's strength away, that is what balanced me most. I am afraid of all the unknown and I am afraid of always feeling this alone, because this is very a lonely feeling no matter how many people are around you. The past three months have taken their toll and there are no breaks in between..
I don't mean to be complaining, In the end we got all that we wanted and what Jordan needed, Papa bear is coming home. This is the hand life dealt us and there is no choice but to play it out and try to stay positive. Seriously tho, the whole car thing... I had issues getting the stroller folded and put back in the car and now we're talking a toddler in a carseat, daddy who needs help and a wheel chair... How the hell am I going to do this!?!
He is still extremely weak, because of the muscle and nerve damage, those things takes a very long time to heal. His body is kind of stiff and tight, he can't move like he use to. Today I was watching him in physical therapy, his exercise was to get onto to the floor from his wheel chair and get back up. He did it, he always doese whatever task he is asked to do but it was by no means easy for him. As I watched him, I saw a look of pain rush over his face, he said it didn't hurt but he wouldn't admit it if it did.
The other day his speech/cognitive therapist, had me draw the lay out of our apartment to prepare him for coming home because he could not remember it. He remembers older memories just fine but newer ones, that mostly consist of our life together as parents, are not there. A month ago when he first got to the rehab, he knew who Jordan was because we hung pictures of them together all over every hospital room he was in, he knew he was a Dad but could not remember it. I would show him a picture and ask if he remembered the day, he couldn't. It took everything in me to not cry in front of him and sometime I would just have to walk away. But as I drew the lay out of our home for him, little memories started to come, like when we would take Jordan for walks as he was learning his ABC's, he would look up at each building, point to the letters and shout it to us. He remembered we picked a jungle theme for Jordan's room when he was born, he remembered the colors we painted the rooms. Today, when I asked him again if he remembered what our home is like, he did not.
It makes me so mad, for those memories to be taken, it just hurts. Of course I know it's not his fault, it is a result of this horrible rare disease that we got so lucky with. Supposedly the memory takes the longest to come back after something traumatic happens to your brain. Memory loss and decision making issues,everyday he is stronger than the day before it's just going to take a long time to get his full strength back but I have no doubt that he WILL. It can always be worse and for that, I am grateful.
I'm still afraid, I don't want to be. I want to stay as positive as I can. I believe staying positive has the most power in life. I did not start thinking this way until a few months before Jay got really sick but I'm glad I did because it helped. Positivity gets you where you want or need to be and truly believing that you will achieve whatever it is that you want/need. Staying positive trumps it all. That's what I tried to do throughout this whole ordeal,I tried my best. I would do things like made sure Jay had an outfit ready to change into in whatever room of the hospital he was in, and shoes so he could be ready to get up and walk out. When I took the train to Jefferson in Philly, I carried an extra train pass for him to come home with. Hung pictures of him strong and healthy with Jordan. I tried to align everything to be ready as if he was coming home at any given moment. It helped me know we would get through this. Well... that and I drank, more than usual. shit happens.
But that time is finally getting here, Daddy is going to come home just like we wanted all along and here I am getting scarred. I'm scarred of having an amazig, ever changing three year old and his Dad having a disability that will require my help for most things. I have no clue what issues we will face bringing him home, he has been recovering in such a structured, daily routine. I don't do routine besides nap & bedtime and I am not structured, more like a well kept mess! Which one should I get out of the car first? How will I push a wheelchair and shopping cart at the same time? All the freaking paperwork, fighting for social security, the phone calls, the bills and the pile of medical bills, (the one bill I actually opened, was the helicopter transport, Thirty Three Thousand Dollars! I feel like it's just wrong to send a bill like that at a time like this! why can't insurance just tell us they are paid!?) All the appointments to make, getting him to his outpatient therapies, remembering to give him his medications at the right times, home nurse visits, hands on training for Jay that I never feel comfortable doing because I can't lift him, what if he falls? Did I mention we have a three year old? Three year olds are insane! What if I neglect our son? I already felt that feeling everyday that I have left Jordan with a family member since this disease came and knocked us over. But I told Jordan all along Daddy was coming back home and so it became my mission. How do I balance that now? I am truly grateful for the family that helped us and continue to during this time, words could never express it, EVER. Our dreams that we were SO close to reaching of Jordan having a backyard to play in, how long do those dreams have to stay on the back burner? I'm just so damn mad at this disease and what it took. It took Jay's strength away, that is what balanced me most. I am afraid of all the unknown and I am afraid of always feeling this alone, because this is very a lonely feeling no matter how many people are around you. The past three months have taken their toll and there are no breaks in between..
I don't mean to be complaining, In the end we got all that we wanted and what Jordan needed, Papa bear is coming home. This is the hand life dealt us and there is no choice but to play it out and try to stay positive. Seriously tho, the whole car thing... I had issues getting the stroller folded and put back in the car and now we're talking a toddler in a carseat, daddy who needs help and a wheel chair... How the hell am I going to do this!?!
Thursday, May 29, 2014
Jason’s rare Brain Disease (ADEM) and Recovery story and progress so far...
Jason Caruso was a hard working, 39 year old father to 3 year old Jordan and partner to Jordan’s mother, myself, Emily. In the midst of looking for a house to fix up where we could watch our son grow up, Jason got severely sick.
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
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
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