Thank you for posting! Caregivers are very dear to me, y’all have a tough, hard road. Interestingly, BH was the one who suffered PTSD from my rupture, whilst I did not. BH was told every day for 21 days, they didn’t think I’d make it to the next day. They didn’t tell me that of course.
Traci, remember to breathe and breathe deeply. I ruptured and have never been on anti depressants. That’s not quite true, decades before I ruptured my PCP put me on one believing that due to my career choice, I needed to have one, it made me depressed within about two weeks. She stopped it faster than I can type. Remember none of us recover the same or in the same time frame. Yes there are similarities, but there are a lot of differences as well. It’s probably due to the areas of our brain that got hit the hardest and how hard they were hit.
Being in NSICU is exhausting. The RNs have to check on us every 15 minutes, it’s a busy place, loud and depending on the NSICU unit, there may not be much privacy so we hear everybody’s business. Then there’s all the rounds from various Residents. For me, it was more than just am and pm rounds. There’s also the noise from other patients and their visitors, mostly the visitors. When I ruptured the NSICU was more of an open barracks style with just curtains between the patients and I think three private rooms that were utilized. The clacking of shoes on the floor from visitors would always wake me up. I recall one gentleman came up to me said he was a deacon and asked if he could do anything for me. I think he wanted me to ask him to pray, but I said yes, please take those metal heel plates off, they give me a headache. My head hurt all the time, his way of walking just made it hurt more. 3 of my medical team had to walk away. They were still laughing when they came back. They explained he was wanting to pray for/with me and I said he should have asked that question but he didn’t did he?
. It was one of the personality changes that developed, I take everything literally and still to this day do not understand innuendos.
His brain is still in the very early stages of healing and it is using an amazing amount of energy which is my bet on another reason he is waking up through the night, I would suggest you may need to speak to a RDN but try to get more protein in. I wouldn’t eat in NSICU, because I don’t eat if I don’t feel good. I have always been that way. I was threatened with a feeding tube by BH. The staff had called and said that was the next move so BH told me over the phone either eat or get a feeding tube. They sent an RDN in and she explained I had to have at least 90 gms a day. She ordered ice cream that had 30 gms of protein in it that I liked, 3 times/day. Of course one of the doctors, Dr. Walker and EB, a med student came in and said I had to eat a meal before I could get the ice cream. The RDN did give me some and I actually liked it. It sure sounds like I was childish doesn’t it, but whatever works…To this day, I still need a significant amount of protein or my brain doesn’t work well. So I use protein drinks and bars to supplement my meals. Hydration is also a must for me. For every angiogram I’ve had my rules have remained the same Gatorade (3 bottles I think they’re 32 ounce) and twice that in water, for three months, sometimes six months.
Theoretically, your husband can start speech therapy as soon as he is stable which he is because he came home. I think it was about nine months after I came home because I was exhausted and sleeping all the time that I was able to endure ST which is also exhausting. I had to be able to concentrate. I also had my second repair attempt six months after I ruptured. It’s something that would be an excellent question for his doctor, as he will need an order written. I can’t remember if I started PT (probably) or ST first, I received neither in hospital. Whatever I needed, I just asked Dr. Quintero -Wolfe and tell her where to send the order. The PCP I had at the time wasn’t any help, I have since changed PCPs. Depending on where you reside and where he was hospitalized, the Neurosurgeon may not be familiar with services available for your husband. Don’t be surprised if his surgeon passes him on to his PCP.
For me, the frustration was my brain wasn’t working the way it had always worked. I knew it wasn’t working right but I couldn’t explain it so other people could understand. I just called it “brain black” as it was literally a black hole. I couldn’t visualize, my words were wrong, if someone gave me a word and it wasn’t the correct word, my brain shut down and no words could come. We met a Moderator and it was her husband who knew what was going on with my brain, I had no awareness of thought processing. I thank them everyday for that.
When I look back to those first few years, I have come a long way. Three years ago, I didn’t have that ability. BH would very gently correct my memories if they were incorrect. We’ve been together for over 29 years now. My memory used to be really, really good, now not so much. There are a lot of tricks to improving memory, some I learned here, some in ST. I have to look at the calendar on my phone first thing in the morning to know what I’m supposed to do if I have appointments, etc. I use the notes app for chores and the like.
If you’re able to, try taking a nap during the day. Even a 15 minute Power Nap helps greatly. If your husband is able, have him get a snack when he wakes up in the middle of the night. Gaining some sort of independence is a great thing for those of us who’ve ruptured. I’m not allowed to cook unsupervised to this day, but I have things in the cabinets and in the fridge I can eat or drink as I see the need. Early on BH would make up small containers of fruit and cheese, sometimes meat that I could have whenever I wanted.
As always, I’ve written too much. Thank you again for posting and remember we are here for you!
Please know, you are both doing great. Each day is a new journey and we are all here to hold your hand in support.