My sweetie has had 2 unplanned brain surgeries, 1 planned, right lung removed and a few semi knockout tests all in the past two years. I learned pretty quickly that the hospital is the worst place for him for many reasons. One is the bathroom issues. The hospitals don’t allow diapers because of rash and infection concerns. Well the incontinent patients still bask in their own business because they don’t know how to press call button or if they do this loud incomprehensible voice screams from the heavens WHAT DO U NEED? I need my mommy!! You get the picture. I have stayed in the room when allowed 24/7. And when icu wouldn’t let me stay he called me every hour demanding to know where , why, when, how come, it’s my fault he’s there … He also may need valve and aneurysm repair if it continues to grow. In his higher functioning moments I discuss whether he wants to contine the scans of heart and brain because the only solution is more surgery. He is very wishy washy. I mean do I want to know if brain hole or aneurysm are worsening if surgery is not what he wants. Selfishly I say no but am I sentencing him to an untimely death? Who do we discuss this with? Yes he has the paperwork expressing his wishes but that was when he was healthy. When the feeding tube or ventilator are needed and you don’t really know if it’s temporary or if LO will return it is so tormenting.
This is how hubs urinary freq/urgency/incontinence have been managed. Urologist missed opportunity to dx NPH because he just focused on size of prostate brushing me off on the incontinence. Turns out incontinence is not a common symptom in BPH but it is one of the first signs of NPH. Just before 2012 fall that lead to NPH diagnosis hubs was scheduled for a TURP to hopefully reduce frequency and urgency. He was going almost hourly at night. ICU for TBI cancelled prostate surgery. In my spare time I read about it and discovered that urinary incontinence is a common side effect of surgery!!!! I couldn’t believe urologist didn’t tell us this before hand. So please find out all the possible side effects so you can make an informed decision. To manage the frequency hubs takes flomax and avodart. Some night he gets up 2 some nights 4/6. It’s a “crap” shoot and we continue to deal with wet disposables and bedding changes. Our quack neurologist prescribed 300 mg gabapentin when we told him. This was perhaps the least whacky thing because it actually seemed to help at night. But like I said there’s no predicting but I haven’t had to do an extra bedding change for 4 weeks. You know what I’ll be doing tomorrow AM!
On anesthesia. Very very important to rant and rave with actual anesthesiologist that LO has dementia. Hubs is an awful drunk and it has been noted on surgical report that he showed delirium and took a long time to be sufficiently coherent to leave and go to icu room. So if LO has had surgery before try to get the anesthesia report to show anesthesiologist what was given and how responded. After the 2nd brain surgery he was the most alert than previous times so I got the 15 page concoction report and handed it the anesthesiologist nurse and doc and said he has dementia even if he is discussing Einstein’s theory of relativity so watch those brain waves or whatever they do that is so expensive and adjust accordingly and don’t put him on suicide watch in recovery if it’s his dementia. Personally I have found the anesthesiologists the most attentive once they understand.
So that’s my dissertation. I don’t know how I will handle the next crisis surgery but hubs has come back from the brink after I was told that he will never walk or work again. He is doing both. Sure not anywhere near his former level but he’s out in the garden picking up sticks, making beautiful piles that beavers envy and trash guys love and I take him to work. So right this moment my project is to do whatever it takes to keep him around but that can change before I blink my eye. Thanks for reading and letting me get this off my chest.
Posted 6/5/14 on alzconnected.org.