Josh'sMom Posted October 20, 2006 Share Posted October 20, 2006 Hi, this is my first post on a stroke message board. I'm the mom of Josh, a 29 year old who had a massive brainstem stroke on July 28, 2006. He was at work, felt sick, dizzy, nauseous, heard a loud whine in his head. He went to his boss and said he didn't feel well and to call 9-1-1. Josh was disoriented and slurring his speech. The paramedics arrived and took him to the hospital. I was notified by telephone that Josh was taken in to the Emergency Room and that I should get right over there. It was 10:00 a.m. I didn't know what had happened, only that I needed to get there right away. I called my husband and son and told them to head to the hospital too. I was a wreck. Unable to drive myself, a co-worker drove me. I went in to see Josh and could tell he wasn't "right". His speech was slurred, he couldn't move his body parts when asked, he was in extreme distress and discomfort. The doctors thought perhaps he had Meningitis, or a drug overdose or some other disease process. When I asked about a stroke they said, "No, he's too young for a stroke." While in the ER, Josh had blood test, a CT scan (both of which they said was normal), they started him on an IV with medications, they waited and watched and then they intubated Josh to protect his airway (since he was unable to swallow and could aspirate into his lungs). That afternoon they moved him to the ICU. They did a Spinal Tap (which came back normal). That evening, after Josh had an MRI, MRA and MRV, (the MRA is for Arteries and the MRV is for Veins), the doctor told us it was in fact a stroke. The next day, we were told it was a bad stroke, occluding the vessels at the base of his brain. The doctors weren't sure if it was a blood clot or a dissection (where the vessel tears and blood actually obliterates the passage of blood flow). It was a long night. we stayed in ICU with Josh. He was so uncomfortable with the breathing tubes going down his throat. They sedated him. Josh spent 3 weeks in ICU, 2 on a Neuro Unit. He had a trach, a feeding tube, a catheter, a picc line, could only open and close his eyelids (which was very difficult and tiring at times). He couldn't move any body part -- paralysed. Josh had no feeling on his left side, but he could tell if someone touched his right side. He had high fevers 104.7 that antibiotics couldn't bring down. Breathing treatments, suctioning, repositioning, blood draws, nausea, vomiting, ....... my heart broke. On September 1st, Josh was transferred to the world renowned Rehabilitation Institute of Chicago. WOW, what a place !!! Josh has worked hard and is now able to move his head left and right, hold his head upright for 12 minutes while in a wheelchair, open his mouth, move his tongue, use a switch to trigger a computer letterboard (although he prefers me saying the letters aloud because it takes less work than to move his head). Josh can now feel on his left side, but says it feels like it's asleep. He had pneumonia, but was treated and today they took out his trach tube ! ! ! Thanks for listening to my story, hope it can help someone else along this roller-coaster ride. Any insight, suggestions or advice? Josh's Mom, Tina Link to comment Share on other sites More sharing options...
dstraugh Posted October 20, 2006 Share Posted October 20, 2006 Tina, Glad to hear Josh is doing better. My thoughts and prayers are with you all. I'm a stroke survivor - experienced mine on-1-2005. Left me with left sided weakness/paresis. I hope Josh continues to make excellent progress. When progress seems to slow down (which it will), remember to keep positive and...remember to visit the web site often! Link to comment Share on other sites More sharing options...
Guest veggie.vampire Posted October 20, 2006 Share Posted October 20, 2006 Welcome, I had a massive brain stem stroke in February 2005 with all you describe and also lost the power to make any noise. Most important is to stay positive in front of him, you can let go of your fears here or to anyone else. He's making progress, that is great. In stroke terms it is still fairly early days, he may well make more progress yet and don't believe anyone who says progress stops at 6 months or a year. It's rot, I'm 18 months in and in a few months should take a step, definitely improving if slow. The other thing, before I could move my own limbs (after about a year my left limbs were normal but my right still so restricted effectively useless) family moved them for me. The physio called it passive movement, very beneficial. Standing has many benefits too. It sounds as if a standing frame (called easystander in the US I believe) may be too ambitious and if so there's always a tilt table? You're strapped on then tilted to standing so may well be suitable, I used one before I had any movement. They feel precarious at first but you get used to it and rationalise any feelings of falling. A towel or two can be rolled to support the head, my physio did that. Please stretch his calves regularly, mine were allowed to shrink and my feet are at an angle, it's like I wear high heels. Not exactly easy to relearn standing like this! Ask if he's at risk and use braces on the ankles if appropriate. Best wishes. Link to comment Share on other sites More sharing options...
slmstrokeangel Posted October 20, 2006 Share Posted October 20, 2006 Please remember that each move or sound he makes is very hard to do. It's hard to imagine how hard it is unless you have had a stroke. I would have given up but my husband pushed. I advise you to push too. Link to comment Share on other sites More sharing options...
Guest lwisman Posted October 20, 2006 Share Posted October 20, 2006 I also had a massive brainstem stroke. Mine was at 46 in March 1997. I also spent time at RIC and agree it is a great place to be. They do remarkable work. As Diane stated above, it is still very early in stroke recovery. Everyone will learn to be patient. As I am sure you have already learned is is important that you maintain close connections with his team at RIC. Keep encouraging him. His recovery will probably take years. Just keep at it. There are a lot of people in this network who had strokes when they were under 65, even some who had strokes as children. I have even read of people having strokes before they are born. It is not as unusual as many think. I also had the problem that at first the emergency room said I could not have had a stroke. My family went through the drug thing also. It is depressing, but the way it seems to be. Stroke education needs to continue. Good luck to your and your son. Link to comment Share on other sites More sharing options...
Josh'sMom Posted October 21, 2006 Author Share Posted October 21, 2006 Thank you for the replies thus far. It's great to hear from others. lwisman We were invited to sit in on a Care Meeting yesterday. Each therapist and doctor updated on Josh's progress. We encourage Josh to keep up the good work and to work hard. What floor were you on? Do you remember any of the nurses or assistants? Robert (a PCT) has been there a long time, he's wonderful. Thanks for sharing with me. slmstrokeangel Josh's therapist give him a good workout and push him to do his best each time. He is at a great facility for rehab. Josh gets an hour of each: Physical Therapy, Speech Therapy, Occupational Therapy and then some days he also has Tech Center, Recreational Therapy, Pyschologist visits, or Seating and Positioning. He gets a workout! Tired out by night time. I remember Josh giving us an eye-up for yes when I asked him if it's hard work to even open his eyelid. Thanks for your insight. veggie.vampire Josh has had Passive Range of Motion done to his legs, arms, neck since right after the stroke. Even when the hospital PT Department said they wouldn't come do it anymore, I took over and did it twice a day. At RIC he has a great team of therapist. I still do some ROM, usually at night when he's in bed, he likes his legs stretched. Josh has had leg splints/boots since the stroke. They are worn at night and help keep his foot in a flexed right angle. They had Josh on a tilt table for the first time yesterday. It made him dizzy, but he did it. I do stay positive in front of Josh. I fall apart sometimes when I'm away from him, missing him, wanting to be there to take care of him. I cried lots at the beginning. Now it's more when I'm overtired or feeling sad. Hubby and I take turns visiting Josh (I work 40 hours a week). Since the stroke, someone has visited Josh every day but one. Right after the stroke, we spent the whole day with him. Now it's about 7-9 hours a day. Thanks for the helpful advice. onesidedme You're right, to stay positive. Prayer too. I hear you telling me it's still early on post-stroke and to not set a time table for healing. Will do. Keep reminding me though. Josh wants to be better right away, who wouldn't. We tell him how much progress he's made already and how proud we are of all the hard work. He doesn't remember the time period after the stroke, or even arriving at RIC. Is memory a problem with anyone else whose had a brainstem stroke?? Long term memories seem fine, it's the events right after the stroke that are lost. Thank you again for your posts. Josh'sMom -Tina Link to comment Share on other sites More sharing options...
bstockman Posted October 21, 2006 Share Posted October 21, 2006 I am so sorry to hear about Josh, I can't think of anything worse than watching your child ill..... My heart goes out to you and your family. Of course you will have times you cry and it is good to let it out.... Stroke happens so very quickly and progress can be very slow. It is HARD work and extremely tiring. The more some activity is repeated it does help the brain to re learn. I had left side hemiparesis. My walking is not great, but it improved a lot the 2nd yr post stroke. I am so Happy he is in such a great place with so much therapy. I had a right side CVA.. I have memory problems, mostly short term, I don't remeber a lot of the first few months after stroke.. I remeber some things, I did sleep a lot. Link to comment Share on other sites More sharing options...
Josh'sMom Posted November 13, 2006 Author Share Posted November 13, 2006 Hi Everyone, just checking for any new posts. Josh is still at the RIC. His tentative discharge date is the end of this month. From there......I don't know. They suggest a skilled nursing home for more rehab until he is able to transition home. I so want him home. People are telling us it is lots of work to care for a tetraplegic. I just can't stand the thought of Josh in a nursing home. Hubby and I visited a couple. Lots of elderly folks. Most able to get around on their own. Anyone have any input on this issue?? Thanks. Josh's Mom, -Tina Link to comment Share on other sites More sharing options...
dstraugh Posted November 13, 2006 Share Posted November 13, 2006 Hi Tina, It's great to hear Josh is expected to be released from RIC the end of the month. Is there a Social Worker available at RIC who can help you with suggestions on a transition facility. When I was ready to be released from Rehab, the social worker tried to talk my family into placing me in a nursing facility. The only area ones were mainly for the elderly - several people I was at Rehab with were placed in nursing homes until there was an opening at Rehab. Thank goodness I was able to go home - I feel it helped speed up some of my recovery as I was home during the day while my daughter was in school. Initially, I had home based therapy which kept me occupied too. I do hope you are able to find a facility that also cares for the younger generation. Please keep us posted. Link to comment Share on other sites More sharing options...
Guest lwisman Posted November 13, 2006 Share Posted November 13, 2006 Tina, I was also a patient at RIC after my stroke. They also suggested nursing homes. My sister visited three and said she could not see me getting better in any of them. She took me into her home. RIC recommended that we hire caregivers. This was necessary because I could not be on my own and my sister was working. They suggested an agency called European Nannies. Don't have any idea if this is still their recommendation. All of the caregivers we hired were Eastern European, mostly Polish. They had various degrees of English. After trying several we found a great woman who is Polish, has great English (in fact she is a US citizen - married an American), and was really good at knowing when to do things for me, help me do things and allow me to struggle on my own. Ask RIC who they would recommend and check it out. Even if you don't work, this would help to relieve you. Link to comment Share on other sites More sharing options...
jwatrous Posted November 13, 2006 Share Posted November 13, 2006 Dearest Tina - How awful for all of you, especially . Josh as, even in his condition, he is cognizant of what has happened and in a way, he is locked in - unable to move, like he did before! I will keep you all in my prayers and thoughts, and hope you can at least have a good Thanksgiving, being thankful that Josh is alive - Write, when you can - June :cheer: Link to comment Share on other sites More sharing options...
kanderson Posted November 13, 2006 Share Posted November 13, 2006 hi tina, i am so happy that josh is doing better, and he will continue to do so. this is a long and tough road, so dont get discouraged. a nursing home is a great place to recover from a stroke, but it would be better if they had some younger people there as patients for josh to talk to, but then the older people are great too and offer alot to their recovery and encouragement. the staff is usually younger so josh wont feel so out of place. i used to work at nursing homes and we would sometimes get younger patients and the older ones loved it.it would probably not be for a long period of time, just a transition stop before home. the staff make all the difference in the world, older staff and patients tend to mother the younger ones. always checking on them. i thought it was great. anyway, i wish you the best of luck and hope on your road to recovery. kimmie Link to comment Share on other sites More sharing options...
jriva Posted November 14, 2006 Share Posted November 14, 2006 Hi Tina I'm glad to hear that your son is determined and helping in his own recovery. That means a lot. My husband had a massive stroke (not a brainstem) but it left him right side paralyzed and with no language. We were told by two nuerologists that he'd be a vegetable for life and he was transfered to a nursing home. Those places try and serve a purpose, but if there is any way to bring your son home, he'll do better there as I'm sure you know. After a month in the nursing home, I was able to get a nuerologist from a different hospital accept my husband for their rehab program and from there I was able to get him home. That was six and a half years ago and I have not been sorry for one minute that I made that choice to bring him home. Check out our regular caregiver forums, too. Many of our issues are universal. You've got a long road ahead of you, so learn to pace yourself. You'll be in my thoughts. Jean Link to comment Share on other sites More sharing options...
mikisteph Posted November 20, 2006 Share Posted November 20, 2006 hello Tina, Do not discount a nursing home so quickly. I had a brainstem stroke, just like Josh, and was left similarly affected. After about 6 months in hospital and rehab and being deserted by my wife i ended up in an old peoples home although i am far from old. The residents were mainly old women who mothered me and eventually after about 18 months i left to live in a normal house with many adaptions and my two teenage daughters. I made many friends in the home and still visit regularly, without those old ladies i could not have made the recovery i have so it may not be as bad as you think. Mike Link to comment Share on other sites More sharing options...
Josh'sMom Posted November 21, 2006 Author Share Posted November 21, 2006 Mike- Thanks for the encouraging insight...... you're right !!!! Perhaps being in an old folks home wouldn't be as bad as I think. Being that he is so young, it would be nice to have all the grandmothers and grandfathers look in after Josh. How old were you when you had your brainstem stroke? It is so sweet of you to still visit there, I'm sure they appreciate it. Warmest Regards, Tina Link to comment Share on other sites More sharing options...
lisas Posted November 26, 2006 Share Posted November 26, 2006 :welcome: Tina, I'm so sorry to hear about Josh. I'm also sorry I have missed this post. It hits home for me. My daughter Rachel who is 22, had a massive stroke on 2/17/06. She couldn't move-only left arm, talk, swallow, etc... for about 1 week. Little by little she started to regain some of her lost functions. She now walks with a quad cane, wearing an AFO on her right leg. She still can't use her right arm. She eats everything, speaks better, but not to where she was. We can understand her needs. She also stayed at the Chicago Rehab Institute, but at a branch down here where we live in Southern IL. They too were great with Rachel. We were given the option of Rachel going to a nursing home, but we chose to bring Rachel home with us. My husband was a nurse for 30 years, and I myself a mental health technician at a state hospital for 7 years, also working in a hospital and nursing home pryor to that. It can be difficult at times, but we love having Rachel with us. You can PM me anytime if you like. My prayers are with you and Josh. Link to comment Share on other sites More sharing options...
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