Matt, I’m really happy to read your mother is receiving better care! If the minor infections are decubitus ulcers, the ICU is going to be in a bit of a pickle. Any medical facility that is the cause of decubitus ulcers (bed sores) can lose their federal funding. They certainly get fined and have to do a bunch of retraining. Medicare/Medicaid takes them very seriously as it’s indicative of poor nursing care. From my experience with both my parents, a staff member looks over the patient when leaving and there’s another that looks over the patient when receiving.
I would never fabricate my rupture, never ever. Tell those doctors to just call Dr. Quintero -Wolfe at Atrium Health Wake Forest Baptist Health in Winston-Salem. They can ask her about her patient that ruptured with a 5mm multi-lobed aneurysm with more than 24 daughter sacs (she quit counting at 24) and that developed Foreign Accent Syndrome after procedure #2 for more coils, #3 had balloon assist with more coils, and finally #4 with the NeuroForm Atlas Stent and wait for it - more coils! I’m sorry, lost my temper there…. I was on a zoom type of information with the BAF years ago and I couldn’t find any information on vasospasms online back then. I asked the guest speaker, a doctor, the nitwit had the audacity to tell me it was impossible for me to have vasospasms for 21 days. He then blew me off. I’ve not been back on those “meetings”
I also had a PA from TN tell me in the cab headed to the Capitol for lobby day that if it was the surgeon she worked under, he would have done a craniotomy right away. Didn’t matter that the treatment my surgeon did was successful for me and the PA dismissed it. She also stuck us with meeting her Congressman as she decided to fly home, apparently either her family or her husband’s family didn’t see eye to eye with that Congressman.
So yes, 21 days of vasospasms is in my medical record. I was not in a comatose state. The Residents told BH not to expect much, that I may never wake up, that I may not make it, that I may not be able to speak, walk etc. I woke up before they expected me to so I surprised them then. They started in on asking a lot of questions but I only focused on BH. I knew BH, I knew we had promised early in our relationship to dance in the streets and I asked, more like insisted, BH go home and get my good Japanese saw off the floor in the cellar🤣
How bad the vasospasms were, I really couldn’t say. Between the rupture and the vasospasms, Either EB or Dr, Walker, I think it was explained vasospasms in this way - take some playdoh and roll it out into a snake, Spread your fingers and push down on it, this is your artery and though it’s not completely blocked, the blood can’t get through to the part of the brain it needs to, at the amount it needs and a part can get damaged due to lack of oxygen, etc. the other example was taking a garden hose and kinking and then letting go. I have an incredible amount of brain damage is what I’ve been told. I have also been told by several doctors outside of the hospital, that there is no medical reason that I should be here. My surgeon calls me her miracle of miracles. Why did I survive and others don’t, I don’t know but I decided it was because I still had a job to do.
I forget the woman’s name that came in every day and did the ultrasounds. One time, a young man showed up, did it and in probably an hour, she came back and did another. She wasn’t happy with what he had done. She had over 30 years experience! I was getting them 2-3 times during the regular work day hours. I think they started sometime in week 2. I was getting an amazing number of CT scans prior to the ultrasounds, then the CTs slowed down to maybe one or two a week. Seems every time the Residents came to see me I was having yet another CT done. I haven’t requested my radiology records but did find out they are a separate record though findings of MRI/As and CTs are in my record. Oddly enough, I don’t have all the CTs in it either.
I know my brain was in excruciating pain and dumb me told them to stop the morphine. I thought it was the cause of me not being able to think clearly🤪. BH was told every day that I may not make it to the next and don’t have a lot of expectations on me surviving. It wasn’t until Day 22 or 23 that the Residents were semi convinced I would make it. Fortunately there were other people, Dr. Walker, EB and many of the RNs who gave BH encouragement as opposed to negativity. They also encouraged me to keep fighting. I remember telling the CNA to turn off the tv after they moved me from the open floor. She got mad. Apparently I had stopped her from watching her soap operas or talk shows. All I know is the light and sound from the tv hurt my already hurting brain. Flora, a wonderful RN came and pulled the plug when the CNA refused to turn it off.
The LEDs in the pen flashlights caused more excruciating pain and I just couldn’t adjust to it all. I got to the point I refused to open my eyes for most of the Residents. There were a few that I can name to this date that I didn’t mind and it’s probably because they didn’t make “the sign of the cross” as quickly. One time I told the groups that came by that they could do any sign, Star of David, Sheba, Muslim, it didn’t matter to just quit blessing me…only one doctor got it and he laughed so hard he choked. I’m guessing he was the one who knew a bit about Catholicism
Most of the RNs assigned to me were wonderful and kept the lights as low as they could and still do their work. They come in every 15 minutes around the clock. They couldn’t turn off the machines that constantly beep and ring and make all kinds of disrupting noise despite my pleading. It’s interesting I can recall all this and I do apologize for rambling. You did ask me to elaborate:scream:
They tried dexamethasone for the vasospasms but I hallucinated horribly. I scared the poor RN, Susannah, so bad, she went running to get someone. In came Dr. Walker and EB (med student) and out EB ran. Two of the three Residents came hustling and did they ever get that stuff out of me and quick! It was the only hallucination I am aware of having and I have never forgotten it, I believe it would make a decent part in a Stephen King novel
I had no PT or OT in ICU. I was adept at PT having had back surgery the year prior and would do those exercises all the time. Dr. Q-W didn’t sign a release for me to get out of bed. Maybe the end of week 2 or beginning of 3 I decided I needed to walk. After all I had my lower lumber fixed the year before, as my choice was walk or not walk. I decided the Neurosurgeon who did my back surgery would be upset that I wasn’t waking. I stood up and couldn’t remember what I was supposed to do. BH came in and asked what was wrong. I said I wanted to walk but I couldn’t remember how. BH said the tears were just rolling down. BH sang “put one foot in front of the other…” and I walked about 50’! The entire medical staff began singing along and I remember one woman who was unresponsive began singing as well. From that moment on, she would always wave to me when I walked by. Unfortunately she didn’t make it.
Seems Tuesdays were a really bad day for patients and RNs. Tuesday was the day that many patients stopped living. When you’re in ICU for a long time, you feel the energy I guess it is. When patients die, there’s a tremendous busyness and then the RNs hardly speak. I get it, death is hard on everyone that’s living. Many times I would get several RNs that just came into my room for a break. I rarely spoke to them during these times, they needed a chance to regroup and breathe. I asked the Charge Nurse why they did this when he came in one night, he said they didn’t fully understand it but when they came in, they were surrounded by peace. I have a different concept of my Higher Power than what I was taught in Catholic school and Church. We are great friends, God and I. The way I perceive our relationship is we have worked together a very long time and we both pull our share of the load. I certainly couldn’t have survived working as long as I did with the client population I worked with without God’s help. But I also knew I had a responsibility to help God in my work. So maybe that’s where the peace came from, I don’t know.
I cursed one time in 26 days and used the “f” word. Mostly I’d say something my Dad’s family often said - “Jesus, Mary and Joseph, that hurt.” When I did curse that one time - it was when a very large number of medical folks, students, RNs and doctors were crammed into my little room. They decided to do an A-line and Central line as my veins were blowing and there wasn’t much more spots for the IV needle. When EB was trying to put in the A-line, I begged her to stop repeatedly as it hurt to much. I still feel bad as it upset EB and she did stop but she had to walk out for a moment. The doctor who was full of himself and probably one of her instructors said he would do it but he tried the one she was in and then had to go to the other wrist. He put it in but he put it in wrong and buddy did it hurt so I cussed. I used a lot of other non curse words to let him know exactly how I felt about his arrogant attitude and he better get EB back in my room stat! Well everyone started laughing and clapping. I couldn’t figure out why. They said they didn’t know I could curse and they all were very proud of me. Dr. Q-W came in later that day and made me promise not to curse, to use my words. I understand her request, it’s much too easy for someone who has brain damage especially in both language areas to curse and not sue their words. When Ben came on duty that night he felt the A line, and tried to get thePA in duty to remove it. That PA pressed on it and the pain went up. Ben got Dr. Q-W to order it being taken out before they even started rounds that next morning.
I begged to be released for a week or two. I told Dr, Q-W my dog was dying and I needed to be home for Trouble, Dr, Q-W said I couldn’t know that, I thought she had lost her mind! Of course I knew it I told her, Trouble is 14 ½ years old, dogs do not live forever. Dr, Q-W told BH not to tell me if Trouble died, BH told her I would know the minute BH came in. She did try to release me despite some of the others. She thought it would help me. But once again. I was a fool and literally danced out of ICU to go to the step down unit, I was back in within a few hours as the vasospasms got really bad.
Triple H therapy was used to control the vasospasms and I controlled the Triple H with my style of relaxation breathing, Eventually I was released to go home. I could walk, talk and feed myself. I had difficulty with buttons at first but I got them pretty much mastered. Dr. Q-W is 60 miles from where we live and several counties in between. She left it up to my PC to get me the help I needed. He didn’t know what to do with me but suggested I get another Neurosurgeon. I got another PCP eventually. I did know basically what I needed -ST,OT, PT. Dr. Q-W wrote a prescription for anything I requested. I just couldn’t find an OT but my ST worked on those skills with me. It’s why I am not allowed to cook unsupervised😂
I have an educational background in Developmental Psychology so I was fortunate to know what I needed. I worked with a lot of families and I knew I had to set small goals to get to the large goals. I had no awareness of thought processing early on, I just said whatever came out of my mouth. It has been a tremendous amount of hard, consistent work. If I failed to do something one day and completely rest, I would forget how to do it the next. I take a positive attitude in every second of every day and I see the beauty in the smallest of things, I don’t need the big ones, never have.
I’ve written an awful lot Matt, if I didn’t answer a question, ask again