Recovery after Hemorrhagic stroke, walking

[NickyVicks]

Hello all. I’ve used this site many times reading others experiences with stroke
I thought it was time for me to share mine. My mother had a hemorrhagic stroke 3 months ago. Her Coumadin levels were high and she had a benign cystic mass that bled, it wasn’t related to her blood pressure at all. She was unable to talk, eat, walk and move the right side of her body. The second day after the stroke they drained her brain from the excessive fluid. Her first word was “dry". After about a week the neurologist determined she needed a shunt put in to correct the excess fluid (hydrophilous). She said a couple a words each day in the ICU. My mom’s blood pressure was now through the roof, she was getting fevers and sleeping most of the day. She slept a lot the first couple of weeks. She was also receiving nasal tube feedings, then her neurologist suggest she get the PEG tube since she wasn’t swallowing. (Through the stomach) The neuro checks happen about 2 to 3 times a day. “Give me 2 fingers, lift your arm, squeeze my hand” Some days she would give 2 fingers, sometime she would give 5 instead of 2 sometimes she wouldn’t do anything. There were days it was so hard to wake her up, she was in a stupor. They tested to see if she was having seizures, and thankfully it came back fine. Once she was what they determined to be “stable” they wanted to transfer her from the ICU to the sub acute rehab facility eliminating the “step down” unit altogether.  While the nurses were transferring her PEG tube came out from her stomach and we waited 5 days until the surgery could be done again.
Her vocabulary started increasing slowly by the week. She was able to now move her right side more. Physical Therapy in the hospital was really just sitting her in a jerry lounge chair.  She was on a couple of antibiotics and they discharged her to the rehab center, she spent 28 days in the hospital. My mother participated in therapy but barley. She slept, and could hardly lift her legs like she did in the hospital. 4 days later she went back to the hospital for pneumonia and dehydration. We found out she wasn’t receiving her lasix (water pill) at the rehab place. She stayed in the hospital for 2 weeks and went back the rehab.
My family and I were with my mom from 9am to 9pm everyday. Whatever the discharge orders are from the hospitalist MD, will be changed by the MD at the rehab/nursing facility.  It is very important that you are involved in what goes on day to day. The 3rd day at the rehab, my mom was unresponsive we pleaded with the nurses that she was dehydrated and needed water in her PEG tube, once she received the water she started to come around. One LPN checked my moms sugar, it was 60. He then proceeded to give my mother a full dose of insulin.They spent the whole night trying to raise it. We found out most of the nurses were doing this, thats why she was sleeping through therapy. After being at the rehab center my mom is able to eat and drink regular foods, she’s walking with the assistance of her therapist, talking a lot telling jokes. There is some confusion but it is getting better. She’s lifting weights and getting stronger. She has a longways to go,but she’s getting there. My advice to family members is to never give up. I had a nurse tell me my mothers case doesn’t look good at all and I really started preparing myself for the worst. Never give up hope on them. If they need to go to a rehab center, research it online. Be very involved, people assumed my mother was always weak and unresponsive. After she started getting the right amount of water and insulin she was a different person. If you see a mental change in your family member and the CT scan is ok make sure their sodium levels are fine, and ask for a copy of their recent labs. Don’t let the hospital push them out before they are ready. With a stroke, the sooner you get rehab the better, but rehab wont be of any use if they have other medical conditions being ignored.  My mom has come a long way in 3 months. She has arthritis in her knee thats keeping her from progressing as fast as she could, If anyone else had a similar problem and would like share I would appreciate it. All and all she looks good, and needs is time. Good luck to everyone.

[NickyVicks]

The rehab place my mother is in is sub-acute and she receives about an hour and a half a day. I was very upset at first but she was very weak, 3 hours would have just been too much for my mom. The rehab place has excellent therapy, sometimes there are 4 therapist working with my mother at once. The medical care is a different story. You mentioned St. Francis… you mean in Long Island?  I would pay extra attention to anything causing altered mental status like sedatives and anxiety meds basically anything that can mask a new stroke. Don’t listen to the neurologist in terms of their negativity all it means is extra work for the doctors to get your wife back to her new baseline. If I listened to everyone I would have given up hope a long time ago. I read a study that music therapy helps stroke survivors suffering with dysphagia make connections and speak more. I am telling you it works. All I did is put and ipod on her favorite radio station and she started mouthing the words in sync with the song. Your wifes peg can be reversed, the trach can be reversed. Once her meds are correct she will improve. This will be a constant fight for both of you. She will improve, and I pray she will improve sooner rather than later.

[Chevezi]

You are absolutely correct. They sent my wife to rehab and told us to come back to the hospital 8/12 for her final medication regimen this after a failed brain stent. A stroke on the vision part of her brain and a brain stem stroke after they sent us home the second time. We were at rehab one week and still two weeks away from our 8/12th appt when she had another brain stem stroke. 64 years young and three strokes in less than a month. Needless to say they now have her on eliquis,plavix,antipltelets and aspirin. It is a little to late for us. They should have kept her in hospital until the right drugs were  given. Like many of us we want to get better faster and the hospitals are incentivized to get the patients discharged a lot of from insurance pressure. I could write a book on insurance issues but that's for another topic.