Mom, to me at least, was always healthy and vibrant. I remember as a true force to be reckoned with as a kid. There's this story of her that everybody tells about her that I got to experience in person that shows just what kind of big forceful personality she had:
There was a Christmas advertisement for Montgomery Ward (yeah... it's kind of an old story!) and it had a Commodore 64 set that I wanted. This would be our second computer as the first one died. The computer was on a good sale and the set included the computer, a disc drive, a TV/monitor, a printer and a 1200 baud modem. When we got there the salesman got everything and rung it up and I just couldn't help but point out that the modem was a 300 baud instead of the 1200 listed in the ad. Mom, very politely, pointed out the problem and wanted it corrected.
The sales guy said no. He also pointed out that the price in the ad was wrong and it was $50 more.
Mom started to ramp up. She pointed out that the modem in the advertisement was clearly listed as a 1200 baud, and the ad had the price listed clear as day. Understand, mom had no idea what 300 or 1200 baud meant. She was going completely on the point that I was saying 1200 was better and of course the price in the weekly ad. The salesman said that the advertisement was a mistake and that they couldn't honor it. I remember him even pulling up a little cheap printed sign that mentioned the 'change' in the ad. They went back and forth several times with mom never giving up an inch and getting more and more intense on each pass. When she finally leaned over the counter and pointed her finger into his face she told him to get his manager (he actually WAS the manager of the electronics department!) because he was useless to her. I think that may be the first time I saw a man break down from my mom's intensity (he wouldn't be the last).
When the store's general manager came up he didn't take long to assess the situation. We not only walked out paying the advertised price, but we had the 1200 baud modem and a software package offered as an apology for the inconvenience. It was actually mom that 'suggested' (demanded) the apologetic software package.
Now I know that doesn't explain her health, but it does go to show her vitality. Mom was never a wall flower. Her personality overwhelmed any group or room she was in.
Health wise, I've learned a lot and it hasn't always been the best, but there is a clear line of before the heart problems and after. There's more to that delineation, but I'll get to that.
Mom's earliest health problems were diabetes and her hernias. I never knew she had type 2 diabetes until much later, but she had that back when I was in high school. I guess they found it when she was in the hospital for her first hernia surgery. Like most hernias, they don't know what caused Mom's, but the procedure back then was about the same as now; leave it alone until it gets strangulated. Mom's eventually did and they went in to fix it. They didn't have to cut out any bowel, but they did have to use a mesh to cover the hole in her abdomen. She would eventually have three surgeries as the mesh kept failing and now much of her abdominal wall is weak and like 'swiss cheese'... that's the surgeon's description to us! Basically at this point, she's always at risk of it failing and having to go in for another hernia surgery.
So from high school on, that was her list of medical problems. She was on a few daily meds for her diabetes but it was well controlled. Then dad died. Remember, that was a REALLY bad time for mom as both her father and her husband went quickly and severely down in health and both died within 6 months of each other. Mom's mother had died much earlier and mom was always worried she would die soon as she had, at that point, already lived longer than her mother had. Mom went on a mild anti-depressant and dealt with the grief. With my nursing knowledge now I can recognize that the prozac dose is too low to do any actual good... it was basically there for the placebo affect.
About 6 months after Dad's death mom and my aunt went on a long vacation. They drove from Michigan out to California, and back. The vacation was the trip itself as there was no destination. When she got back she was complaining of massive headaches and at times just ran out of breath. What she later told the doctor but didn't tell any of us at the time, she was also experiencing chest pains.
All three of these symptoms were results of heart problems. She had some majorly clogged arteries in her heart. Mom just took it as a sign that she was going to die.. after all good loving couples often died within months of each other, right? About a year after my Dad's death she went in for a heart cath and expected to wake up with several stents. Instead she woke up with the news that the clogs were in bad places and she'd instead need bypass surgery. Three bypasses to be specific. It took a lot of convincing, but she eventually agreed and had the surgery.
All three bypasses failed.
It took the cardiologists and surgeons about six months to figure it out and admit it, but they all probably failed within a few days or a week of the surgery. She had to go through the recovery process of open chest surgery without the recuperating benefits from the surgery itself. She eventually went back under and had two stents put in.
From that point on she was never the same. She never EVER had the recovery that she needed. Her health history to this point looks like this:
She was healthy. She had some problems and procedures. She was unhealthy.
She was on many medications that complicated a lot as they all had their own side affects. From there, it's just been a series of ongoing and new problems. She had a bad bout of diverticulitis where she almost bled out. She had another hernia surgery. She had an ICD/pacemaker put in. She blew through the battery on the ICD and had to have it replaced. She had the ICD shock her and had to be in the hospital until they got her meds and it's settings re-set up. She had vertigo. She was diagnosed with COPD. She is now on oxygen for sleeping and activity and now has been directed to wear oxygen at all times.
When I became a nurse, I had a long talk with mom and we came to the mutual agreement that I would be her son in all of her health care situations and not her nurse. I wouldn't push for what was 'right' for her healthwise, I would push for what she wanted. If she had questions, I could answer them but I wouldn't push the healthy lifestyle on her.
Lemme take a step back and say that being her son and not her nurse is HARD. It's difficult. My nursing sense is SCREAMING to be more for her. But I want her to be open with me and to tell me what's going on. And if she thinks I'm going to be 'one of them' she just won't. She'll tell me shes doing well. So the most 'nursy' I get with her is to say that she should set up appointments with her doctor when she's not feeling well.
Okay, so if we step back to her health in November. She still has the reduced heart capacity. Her cardiologist keeps her blood pressure VERY low to give her heart as much rest as it can get. Low enough that she has dizzy spells and low enough that her general practitioner wants the meds changed to allow it to be higher. That cardiologist refuses. She's on oxygen. She wears it to bed every night and whenever she feels she needs it during the day. She agrees she needs it when she does most physical activities like emptying the dishwasher and cooking. I'll gently ask if she'd like her oxygen when I can clearly see she needs it... but I always let it be her choice. I know her oxygen level is to low and I had one 'nursy' discusssion with her about how important it was to keep her oxygen level at or above 92%.
Understand... you, me, anybody... we should all be at 95% or above. A person in very good health like an athelete should likely be at 98% or above most of the time. A smoker like me might dip down to 94%, but I'm most often in the 96 to 98% range. For most people, 92% would mean getting on oxygen. But Mom's COPD changes that. 92% is her 'ideal' range as it's just unrealistic to expect anything higher.
Mom's is most often below 90%. I've seen her take it and it's been as low as 82%. That's life threatening. But we've had the talk and I know that she knows it's importance... so I won't be her nurse and will just be her son. I only put those numbers out there if shes with her doctor and she tries to lie about it. I don't think she's lying maliciously... she's just embarrassed that she's not in good enough health and doesn't want to make herself seem more ill. Even if she IS more ill.
So that's her baseline last month.
She felt that she needed her oxygen more and more and she was having some chest pain (more chest pain than normal) so she called her cardiologist for an appointment. It turns out she was supposed to have a regular appointment in March but they messed up while changing some software on their end and didn't get it scheduled. So they got her in quickly... and decided they needed some major testing. A cardio echogram to see how well her heart was working along with a stress test. These tests both showed she had significant reductions in her heart capacity. Her ejection fraction (a measurement of how well the heart is pumping... good is 60-80%, Mom's was at 45% after her stents) was down to 35%. They also showed an area of muscle death in her heart meaning at some point she'd had another heart attack, and some blockages. The decided course of action was a hearth cathertisation to see how everything was and to put in any new stents if needed. They said the heart cath could be scheduled any time in the next month.
I figured this was good news overall. It explained her chest pain and reduced activity level, and a stent might return her to normal. This was just before thanksgiving and I pushed her to have it before Christmas... Mom wanted it in January. Thankfully she listened and she had her heart cath on December 12th. They found several smaller blockages that didn't warrant action and a big blockage that did. They placed a new stent. The doc didn't seem to think that the single blockage could account for all of her symptoms but said it was now in a wait and see situation. She'd see her cardiologist in mid January and they'd talk about how she did after the stent.
After mom got home, she got a cold. A lot of coughing and feeling like she needed more oxygen. I didn't think too much of this as her COPD just makes her more prone to chest colds and when she's sick, she needs more oxygen. She's just more sensitive to it compared to you or I or other 'healthy' people.
This past Thursday she got a call and found out that they had meant her to have a CT scan of her chest within a week. She laughed at the idea of coming in that day and agreed to come in on Friday. I'm not made aware of this, and I can't blame her for not telling me. It's just a post procedure test and she'll be in and out.
So, my thinking is that the next few days will look like this: I'll get out on Friday and have the next 5 days off. I'm supposed to work Monday, but I took it off as it's the best day for our family's Christmas. We'll have everybody over, do our gift exchanges and just have a good time. Mom, R, and I would meanwhile have a more calm Christmas Eve and Christmas Day. Then, back to work on Thursday.
Friday, when I get out of work, I get a text from my brother B, that Mom had a CT scan of her chest (remember.. I didn't know she was going to have that done!), and had some blood clots in her lungs. They were in the ER, had just put her on a heparin drip, and would be keeping her overnight at the very least. If it were summer I would have made it home in like 30 minutes, but my all season tires can't get grip on cold pavement and that damn car puts down to much horsepower so every time I tried to be quick or fast, I'd just lose traction. But I ran to the hospital as fast as I could.
Theres two reactions I went through. The son and the nurse.
The son: Mom is in the ER. She has blood clots in her lungs. She hates being in the hospital and would never agree to stay there if she had a choice, so this has been made clear to her that it's bad.
The nurse: Mom has blood clots in her lungs. If they move they can cut off a big portion of her lung and she can die. If they move they can get out of the lung and end up in the heart or brain and she can die. Mom is on heparin. If they don't get the infusion just right she can bleed out internally and die, or it can be ineffective and the blood clot can move and... see above, but she can die.
I didn't share my nursing concerns with mom or even my brothers. I just told them it was serious if they were using heparin.
Thankfully she did okay. She had to be admitted for the night which sucks on a Friday night at 7 pm. She eventually got a room around 9 pm and saw the doc soon thereafter. He asked his questions and did his assessment and said he wasn't too concerned about where the clots came from (and medically that's a good point... it doesn't matter) as it wasn't from her heart (afib). He said they'd get her off the heparin after it as done infusing and move her over to a different anti-coagulant that she could take in pill form. He said she MIGHT be out the next day (Saturday) but probably the following day (Sunday... today).
So, Mom was taking this in stride which is surprising for her. She'd normally rail against being in the hospital. To be honest, part of that is the food. When she's in for most procedures they have her on a diabetic diet and a cardiac diet. No sugar, very few carbs, and no salt. The food, more or less, tastes like shit to begin with and that just makes it worse. When she was in for her heart cath and stent, they added a fluid restriction, but it was a 2000 ml restriction and Mom doesn't really drink that much anyway. She couldn't order fluids from the cafeteria, but the nurses could override it so long as they accounted for it. This time they, for whatever reason, they did put her on the same fluid restriction but didn't put her on the diabetic or cardiac diets. So she can eat decent food.
I didn't expect her to get out yesterday and I tried to keep her in that mental state while I was visiting with her. I figured if she was planning on Sunday and got out on Sunday it would be meeting expectations. if she got out on Saturday it would be exceeding expectations. After R and I left, B stayed for awhile. Just as he was getting ready to leave, a team of doctors came in. They seem to agree on her treatment going forward... get her off the heparin and get her on an oral anticoagulant, and then just follow up with her regular general practitioner and her cardiologist... but they also wanted to get a new cardiac echo and see how her heart was doing after the stent.
This actually makes sense. There isn't much chance of her stent procedure causing the blood clots, but the symptoms of the blood clots in her lungs and her reduced heart capacity are about the same. So they want to see if her heart is doing the same, better, or worse, since the stent. If she's doing better then there is no concern. If she's doing the same, its probably nothing but she might have a clot in her heart. If shes doing worse... well that's bad as she JUST had a procedure that should give her improvement.
And now they expect she might get out on Monday.
This is bad in so many ways. First, medically I don't like that they doctors are concerned enough about her heart to keep her. This should be a simple diagnostic and solution... blood clot leads to anticoagulant (heparin) which transitions to a long term oral coagulant. In and out over a couple days. Her heart condition is a separate concern... or at least should be. Second, Mom hates hospitals and while I might have helped in not having her expect to get out on Saturday, I did convince her she'd get out on Sunday. Now that expectation has been destroyed. PLUS she's now going to get out on the day our family has planned for Christmas. Don't get me wrong... we can have Christmas on another day. It'll just take some finagling of schedules. But Mom PLANNED it to be on Monday and, in her mind at least, her health problems are causing the family's Christmas plans to be ruined.
That's where we're at. When I'm done posting this, I'm going to get ready and head up to visit with her. I'll be in the hospital with her most of the day to keep her company and try to keep her spirits up. Going forward...
Well, if I'm honest with myself, going forward I have the same fears I imagine mom does. With her health situation... her heart, her COPD, her smoking, her diabetes... her death is going to come in a situation like this. She'll have mild symptoms that eventually drive her to the doctor and that will lead her to the hospital where she'll have more aggressive treatment with it's on inherent risks, and they'll lead to a bad outcome that leads her to being put in a recovery hospital long term.... or her dying. Mom is unlikely to have a sudden death. She's unlikely to have a heart attack kill her or a blood clot to the lungs or brain suddenly kill her. She's going to die slowly and it will begin with something like this.
Do I think she's going to die here soon? No. Can I say she's unlikely to die in the next few days? No, because again... this is how it will start.
Happy Holidays! I hope my next post here isn't how I'm having difficulty dealing with grief.
No comments:
Post a Comment