NOTE: G_y refers to my husband. G- refers to his son. Their first names both start with G. The hospitals are referred to numerically(1,2,3)rather than name;nor are they identified by location. There is a disclaimer at the end explaining the edit.
the nurses told me my husband couldn’t think outside himself. Yes,he can. He serenaded me with the tune,what he knew of it,”I’ll be home for Christmas”,a couple days ago.It was so special too.I will never forget the look in his eyes.
You sit in a room with four white walls for weeks on end with no calendar or visual cues,sedated part of the time and let’s see if you can figure out what day of the week it is.
There’s nobody like my husband. We might have missed Christmas but my hope is we ring in the New Year.
Now let’s talk about how we got here. It all began with a severe case of cellulitis that either we didn’t notice had started or advanced suddenly and went from just below his knee to the tips of toes.
It wasn’t red;it was maroon,black in spots and swollen. The direct care worker, who was dumb as a box of rocks, kept saying it was probably arthritis.We knew exactly what it was.
i made the doctor appointment for him Friday. He had a temp of 102,it was cellulitis(he’s had mild cases before)and he recommended G_____y go to the hospital. Husband opted to come home,try out an antibiotic and see if he’d improve over the weekend. The temp went down but the infection did not respond to the antibiotics at all. Come Monday the pain was so severe he begged to go to the ER. It was so bad we couldn’t get him in a car so I called 911 and they took him by gurney to the hospital of his choice.
His sister came up with her friend to get me on day 2. We went to see him. For some reason he told his sister-not me-that he’d lost the vision in his left eye and she must have told the nurses because they arranged for an ophthalmologist to check him out the next day.
The next day didn’t come. They whisked him out via ambulance to a more advanced hospital that night. They sedated him, did one exam of his heart then called me. They needed consent [because of his sedation] to do another exam and get better imaging.
They explained the procedure-it seemed fairly low risk-so i said yes. The next thing i knew he was whisked out of that hospital via ambulance to the Hospital from Hell.
G_y had endocarditis. I had never heard of it. I hope to never hear of it again.They continued the antibiotic by IV. I had spoken to G_y by phone but couldn’t make head or tail of anything but one word or two.
I called his son and asked him to call dad and see what he thought. Nope. He couldn’t understand him either. Obviously something was wrong. I’m convinced that the loss of vision in his eye and the garbled speech were a sure sign of stroke and for some reason not one of the 3 hospitals caught it.I think it occurred at Hospital 1.
I did a crash course on everything i could get my hands on regarding endocarditis,heart valve replacement, open heart vs minimally invasive heart surgery etc. I still have questions.
The next thing i know the Dr is calling me saying husband needed valve replacement by open heart surgery. I would have to give consent. I gave verbal consent at the time but i had to go to ______________ to sign forms. They asked me other directives as well.
Yes,resuscitate. Yes,perform a tracheotomy. In short,whatever was necessary to save his life.I called his sister and son. His sister lived closer to __________. She could head over if she wanted to. She did. His son had to get permission to take time off from work and drive all the way up here from Virginia. I would go down with him.
I get a call from the sister and she’s insisting she’ll come get me. I said no. I was waiting for his son and i would come with this son. He got here a little later than expected but i had everything ready and we took off as soon as he got here.
The ‘team’ as it was called came into the room. This is the team,the Dr said. The Dr then explained a few things,as if G—y weren’t even in the room, then brought over the papers for me to sign. He went through each one as i signed what i approved of, from blood transfusions on. I said yes to all. i was sure he would say the surgery was scheduled for the next day.Nope. Monday. He shook my hand and left.
We were going to spend that night in _______________ and made sure G-y came out of surgery ok but at this point his sister was going to go back home and his son had to go back to Virginia.
They left the room to get something to eat at the __________House. I stayed in the room with husband and one of the nurses fixed up a plate for me.Besides, his sister told his son they weren’t going to push around my wheelchair. i didn’t get why she complained since she and her friend weren’t pushing around anything. His son was good enough to do it.
Anyway, G-y-was tired out from our visit. He was out like a light. It was a good time to leave.I called over to the _________ House to see what the hold up was and they were just getting ready to come back. The sister also decided there would be a change in plans since she got G_over there. We had planned that G_ would bring me back home and head for Virginia the next day.
Sister had decided that her friend would take me home. I gave them an emphatic NO. We had made plans. I went down with G_,i would leave with G_.
We got back at 1:00 a.m. He stayed over and was so exhausted he slept like a log. i was on the sofa and watched a little bit of tv before I fell out there.
He left for Virginia in the morning. Took right off.
Meanwhile i was having serious 2nd thoughts about the surgery. i didn’t like the hospital. I felt no trust for the Dr. My husband looked terrible and i had the foreboding thought-call it gut instinct if you like-he would not come out of the operating room alive.
I let them(the hospital) know. It wasn’t a definite “no don’t do it”-it was a “having second thoughts” phone call. I felt pressured by the Dr and his sister both to consent to the surgery. Someday i’m going to write about this rush to surgery some people have and i don’t mean emergency surgery. That’s different.
i called my husband to see how he was doing. He was starting to talk a little bit more each day-not much yet-but he did tell me he’d had a test. I figured it was routine. They had been running tests.
Next, i called the nurses station after our call, to get the test results. This is when i found out the test G-y mentioned was a CT scan. He had fallen out of bed and hit his head so they wanted to be sure he didn’t have brain bleed. The good news: he didn’t. The bad news: they found signs of stroke. Now there was more reason than ever to nix the open heart.
Accidents happen,even in the best of hospitals or nursing facilities. I could overlook that but i found the fact that they never called to tell me inexcusable. if i had NOT called G-y and he mentioned the test when would they have told me, if at all?
I tried to get him out of the hospital and over to the Cleveland Clinic. i put in the request and they got the ambulance. I spoke to one of the drivers. Husband’s insurance would cover the first 50 miles. Beyond that i had to pay up front out of pocket before they left. I didn’t have a few GRAND in the bank (try ZERO) and that ended the trip immediately.
Monday came and went. Gary’s speech continued to improve. The Dr wasn’t exactly clear whether he ought to proceed with the surgery and at that point it was off anyway. We were working on the next steps. i wanted to get a couple of aids and have visiting nurses come in. The hospital was insistent on a nursing facility either in ________(that was OUT)or near here.
I got so frustrated that they gave me a new case manager. What a bunch of flubber dinks this system was. i did learn one thing:if you want to speak to a nurse call when they are off the floor late at night. A conversation with this surgeon was a no go.
They knew we had to communicate by phone. It was a nightmare. The main players were absent.They should have made more effort,not less,because information was exchanged mainly by phone.
A side note: the phone in G-y’s room was so far out of his reach i had to have a nurse go in each time and hand it to him.
After fighting city hall and wanting to get G-y out of there asap I had to go by their rules. It was decide between 2 available facilities up here. On the plus side it was up here.The one had horrible reviews so i picked the one left by default. Neither of these were the first choice but if i wanted him to linger in the hospital for weeks i could have waited and HOPED a bed would open.
His sister had a canary because i requested he came home and get care here.A word of advice to caregivers having to make decisions for a loved one. There is family of your loved one to worry about.You can tell them everything or nothing if you choose to. I felt an obligation to tell them everything.
I got the terrible call from his sister raising hell with me. i could understand her concerns. Of course she was concerned. It’s her brother. On the other hand make it your job to support whatever decision the MARRIED COUPLE choose to make and stay out of the decision making UNLESS asked. His sister went behind my back(making this the 2nd time since the decision about rides)and that was very upsetting.
i didn’t sleep at all that night and couldn’t eat the next day. You see part of the decision making is thinking what THAT PERSON would want you to do. When he gets home we’re going to put ALL of our directives in writing. As much as i helped my mom when dad was ill with Parkinson’s,the one thing i would not do is decide how he would be cared for.
It’s off limits. It’s a matter between a married couple. I know that putting it all in writing for both of us is imperative now. We had never considered it before this.
All you can do is offer support. Trust me,it’s needed.
If he wants to speak to his sister it will be his call. I don’t want to interfere with THEIR relationship. For my part,i’m done speaking to her for now. I’ll get over it eventually. For the time being she’s the least of my worries. He’s my sole concern. I just hope i never find out his sister calling the hospital had any bearing on their insistence for the follow up after his discharge.
I know 2 very important facts re endocarditis: it’s rare and can be fatal. Seek treatment asap!! I also know it can lead to very miserable complications. You do not want to have any loved one go through it.
Here’s some questions i STILL have re endocarditis and G-y’s case.
Was his mitral valve already damaged and that’s why it was attacked? The Dr gave me the impression the bacteria is what damaged the valve.
Can the antibiotic treatment clear out ALL the infection including the infection on the heart or does that have to be removed surgically?
If a person suffers a stroke can a test show if the stroke was caused by a broken off piece of vegetation or could the stroke have been caused by other factors?
If a person is high risk to begin with is it higher risk to do the surgery soon after the stroke? What might the complications be? Is it better to postpone? How long? Would a 2nd opinion hurt?
The heart has four valves. They include:
- tricuspid valve
- pulmonic valve
- mitral valve
- aortic valve
My husband’s case is especially tricky: they had to treat cellulitis,a mitral valve in need of replacement, stroke & endocarditis.On top of all this a past surgery showed [he had] problems with anesthetic. G-y had gastric sleeve surgery and ended up in ICU because he was having difficulty ‘coming to’.I still have questions re that occurrence.
For now I’m getting all the authorizations for his medical records to go the cardiac surgeon in the Cleveland Clinic while I’m waiting to have G-y back home again!
Some of the difficulties i’ve encountered at home are because once the person goes into the hospital the direct care worker no longer works for the(husband) participant;obviously since that person is not at home and in most circumstances that person is the only party it makes sense. In our case it’s left me without transportation to see husband,get necessities or do some errands that should be done before G-y gets home that can only be done by vehicle.
Father Tom at our parish was especially helpful and understanding yesterday when he took me over to see G-y. The Eucharistic minister that came Sunday helped get a device over to him that day. Our deacon is tied up with some circumstances of his own or he would have been able to help with some of these problems. It’s also true with a holiday such as Christmas people are tied up.
Disclaimer: on the advice of someone far more knowledgeable than myself about legal matters i have deliberately REMOVED the hospital name and location to avoid a libel suit from said hospital. Needless to say i feel pretty sure we could have sued them for the fall if anything serious would have come of it;but that’s neither here nor there at this point. NO,I do not wish to be sued and complicate matters for us. We have plenty to deal with.They are now simply referred to as hospital 1,2 or 3 and any indication of location has been deleted.