Mom gets out of hospital...and I go in!

On August 31, I left my mom at hospice about noon, feeling OK, except for my knee being sore. I had a total replacement done on this knee about 9 months ago and it'd been feeling OK, I think I slept on it wrong. The hospice rooms are very nice, but the sleeping arrangements for family members leave a bit to be desired. I'm looking forward to getting home and working on my neglected garden—I'm not going back to my mom's until tomorrow night so I actually get to sleep in my own bed for the first time in weeks!

I get home, get out of the car and now I'm noticeably limping...this is very strange. I decide to take my cane with me to go out to garden and within an hour I'm very glad I did. I can hardly put any weight on my left knee and its swelling! HUH? I decide to take it easy the rest of the day, thinking that maybe I twisted it or something.

The next morning, I'm on crutches and have a fever! I call a friend to first take me to my meeting(its too late to cancel and I'm the presenter) and then he drops me off at the hospital. I call my husband to let him know where I'm at, I tell the staff that my knee is bothering me and that I have a fever. They ask their “normal” questions: Shortness of breath? Some, but that's from my asthma. Chest pain? No, but I did have some lung/bronchial pain this morning—NEVER SAY THESE WORDS!!!

They put me in an examining room—first thing? EKG...why do I need an EKG for my knee? They ask me my name and birth date for each procedure. Temp is 103 degrees! The doc tells me that I will be getting a lung scan and some x-rays, and he thinks I should have a stress test when I get back to my doc. I tell him I had one a couple of years ago-my heart is fine. Well you just complained about chest pain...I said No, I complained about LUNG pain, not chest. “We have to be careful” were the last words....WHAT ABOUT MY KNEE!?!?!?!?!?!??! Oh...yeah...it looks like there's some infection and the tests we're doing will tell us more.

I'm wheeled into the Lung Scan machine—its actually kind of neat in a geeky sort of way. Its a smaller tube than an MRI, you're placed on a table, similar to taking x-rays or an MRI and they take “pictures” of your lungs—like a cat scan, but the lung scanner moves, not you. The staff rotates it around to get pictures of your lungs from front, both sides and back so they can tell if you have any real respiratory issues. Neat, huh? After the lung scan, they wheeled me into the old fashioned x-ray, but they had me stay on the gurney instead of changing to the table under the machine.

So, now I go back to the ER stall(there is room for 3 patients in each room with these nice little curtains between them to simulate privacy). I wait for the tests. I've now been here for oh...about 3 hours. They've decided that I'm able to eat and drink on my own. They've also found out that I DO NOT use a bed pan—I can't, just that simple. Plus, there are 2 male patients in the room with me and I just don't think I want to pee with 2 men right there, call me silly. So, the nurse wheels me down to the bathroom when I have to use it. Since they have a wheelchair, they don't want me using my crutches to assist with my getting on the toilet...they wheel me in as close as they can and then leave me there to sort of defend for myself. I pull the string when I'm done for assistance and  appears a nurse...or not.

They hook me up to the evil IV machine for fluids and some antibiotics and tell me that I'll be going up stairs fairly soon. They've also attached this heart telemetry thing to me which I really don't understand—I Don't Have Heart Problems! Probably one of the worst parts of this is how much the patient is ignored. After 2 normal EKG's, they still won't let it go!

The doc finally comes back in to tell me they think that I have cellulitus in my left knee, an infection of the skin, which I could have picked up in the hospital or nursing home that my mother has been in. Oh Great. They are trying to clear the infection with antibiotics and my normal doctors will see me tomorrow, both have been notified. OK then so 6 hours after I arrived...I'm taken up to the 4^th floor of Good Samaritan Hospital—wait, the 4^th FLOOR?!?!? That's not the right floor, that's the heart patient floor!!!! Yep, ladies and gentlemen, I'm now considered a “heart patient” with no symptoms, but they could show up at any time!!!!! AAAAARRRRGGGGGHHHHHH.

Mom's trip to hospice, my trip to family reality

Mom could breathe on her own, although she couldn't talk because of her throat being irritated with the tube and she was weak. We discussed moving directly back to the nursing home, but doctors, staff and family decided that hospice was a better fit at this time. There was to be no more treatment of the cancer, she couldn't handle it. We didn't know how truly weak she was although we knew that the mass had gotten so large that they could not test how far the cancer had spread(due to not being able to get the tube down her throat). The Joliet Hospice Home is a very nice place. The rooms are large and comfortable, beautiful landscaping and usually fairly quiet. My mom still is not happy with the stations(ok, the nursing home, hospital and hospice leave a lot to be desired—I think one of them at least have CNN, but none have MSNBC and they all had at least 2-3 Fox channels, Headline News-another hour of Nancy Grace would make ME say I committed a murder, CNBC and some of the basic cable channels such as Lifetime), but it is comfortable and family orientated. I went back to staying at night, sometimes both my sister and I would stay. I'd go home during the day since I did have some stuff that I had to get done, and I also had a meeting to get together for Thursday, September 1. Mom was feeling a bit better and getting her voice back, but her hair was a loss, so Cindy brought one of her wigs and it did look pretty good. The doctors and staff have decided that the good news is that mom is too well to be in hospice. The bad news? Mom is too well to be in hospice which means she has to go back to the nursing home. On Tuesday, the nurse tells me that she doesn't feel very good about my mother being able to move to Texas...Texas?? HUH? It seems that my mother and sister have plans that I'm not party to...hmm...I decide not to say anything to either one of them, maybe they just haven't included me yet. On Wednesday, I wake up and my knee(the replacement one) hurts a bit, but I just figure I slept on it wrong. The doctor comes in to see my mom and he, again, tells me about the Houston plans...I tell him that I agree with him, but I have not been told any of this from either my mother or sister. When my mom wakes up, I tell her about it, that I don't agree with it, if that's what she wants to do, fine, but I don't understand why sis just can't fly the other grand kids up, since I've had to hear about how many jewels she has to wear now, how many times they go vacationing, how much this and this and this cost...my sister equates money with being the smartest and bestest in the room, I equate it with Paris Hilton—doesn't make you smart, just makes you able to buy the trendiest accessories. So, my sister comes in and I tell her the same..the first thing she says is that this was mom's idea, she was more than willing to fly “her boys” in to see mom...whatever. She then makes the comment that it will be me doing the road trips, I say no. I've been with mom the last couple of years, we've had our good times, I'm fine with that...well, then MS. HOLIERTHANTHOU gives me that attitude about how that surely isn't enough. Me? I don't have guilt and this toxic relationship, with both mom and sister—is never going to change, is very unhealthy and I have different values about life. For the past 3 years, I've made sure my mom was taken care, her bills paid, get her food. I'd be at her house at least once every other week and spend at least 3 hours with her. I have nothing to feel guilty about. Now, why is my knee hurting even more?

Mom, Michael Jackson and ICU

On Wednesday, mom was transferred to ICU because of pneumonia and not being able to breathe. They sedated her, intubated her and the wait began. My sister stays during the day and I stay during the night; that way we know whats going on and how she's doing.

My first night was not good. First, they have her sedated with propofol, the drug that killed Michael Jackson. It is a wonderful drug, used in the correct manner. Within minutes, the patient is sedated and if you need to wake the patient up it only takes, maybe 10 minutes after the drug is stopped. In this manner, you can sedate, do a procedure and awake the patient with little or no after effects quickly. It is a very powerful medicine and is used sparingly, but its great in the process of incubation. It also causes “amnesia” so that the patient doesn't remember much of the ordeal after the sedation is lifted.

So, I sit down for a long evening. Yes, I can sleep, but we're in ICU—its not like the staff just leave you alone to sleep! They check vitals at least every two hours, come in when one of the bells and whistles begins blowing and other times, just to check, I guess. Don't get me wrong, I was happy they were taking good care of my mom. One of the other things they had to do was suction down her throat and clean out her mouth which, even with the sedation, hurt her—her throat and mouth were raw from the sores that were left from thrush. When they cleaned out her mouth, she would thrash about and I would try to get her to hold my hand, which she usually would, very strongly. She always did have a grip like a fighter!

About 9 p.m.,she develops a fever and they fill fabric bags with ice and put them under her arms and in the groin area to bring the fever down. About 10 p.m. This loud siren goes off and people run in. I walked out and went to the bathroom, I figured they didn't need me in there. After about 15-20 minutes, the nurse tells me that my mom's heart developed an unnatural rhythm and if it happens again, they may have to shock her heart! I go back in and tell mom, you need to calm down cuss your heart needs to rest. The rest of the night, luckily, is uneventful.

The next day my sister tells me the doctors did some tests and yes, she did have a heart attack because there's some damage to her heart. They discussed what would happen if she had another episode, they would use paddles which would break bones and did we want that done? So, besides the cancer, pneumonia, thrush and a bladder infection, she'd have to try heal bones. We sign the DNR decree.

Wednesday night is much less dramatic. She is still thrashing when they touch her mouth, but no heart problems, no new infections. The mucous that comes out is not just tinged with blood, its saturated with it...I have to wonder is it good to put her through this? Another thing I have to wonder is where do I draw the line in my own life? Even through the propofol, even though she's not supposed to remember any of this(Propofol's nickname is “milk of amnesia”), she's in some horrific pain. There is good news, the infections are getting better, but they were trying to do a scope of her throat and couldn't the scope down her throat due to the mass in her throat. We make a decision to wake her on Friday, taking her off the respirator and see what happens. The doctors have said she will not tolerate chemo any more and radiation won't annihilate the cancer by itself. And they don't know if she'll be able to breathe on her own once taken off of the respirator.

So on Friday, my brother, sister, granddaughter and I stand around the bed and wait. They wake up mom, take out the respirator and suction her mouth and this one she remembers! She cannot talk because of being on the respirator and its very frustrating for her. My sister tries to explain what's going on, that there will be no more treatments because she can't tolerate them, there will not be a cure, this is the end of her life...she is not happy or accepting about this. She will stay in ICU for 24 hours and then moved to a regular room for a couple of days and then....hospice.

Mom's dinner and dance party

So...after the fun and laughs we had trying to get a room on Friday, mom was admitted to the hospital, I left the hospital at midnight, got home about 1/2 hour later and really wanted to just drink out of the bottle of Jamison...who needs a steenkin' glass?!? OK, I didn't but I really thought about it!

I didn't go to bed until about 2 a.m. and slept until 11 a.m.

I was woken by a terrific storm so I decided that I'd wait this out before trekking back to Joliet. It finally calmed down about 1p.m. And I set off to the hospital.

When I get there, the buzz is still about the storm, it seems that there was a power surge/outage that hit St. Joe's and has caused some issues, but no one is sure to what extent.

We had an uneventful afternoon and a great nurse. Mom's coloring is a bit better, but she's still not able to eat anything. The nurse tells me that the dietician saw mom in the morning and said that mom should get a tube feeding by the evening. Again, the wait begins...

About 6, I ask again and Super Julie(the good nurse) starts calling. It seems that the storm knocked out part of the pager system and even tho the hospital knew this, they didn't notify the departments(like doing a network broadcast--”Attention: pager system is trashed, go back to call center system”), staff didn't find out until they started calling around to different departments! Julie hadn't called earlier because the nutritionist had told her that mom probably wouldn't receive a feeding until 5 or 6. So, she calls dietary(which closes at 7) and they have no orders. The 2 nutritionists that had been on duty had left for the day and so she called the duty superintendent. The superintendent gets her the home phone number of the nutritionist and finds out that she had given the orders to the pharmacy at NOON! Sooo...what happened to it after that? Dietary already said they didn't have it and they were leaving in 10 minutes, pharmacy was already closed. The dietician said she would come in and get it herself if need be. She called the superintendent. My mother did get her g-tube feeding at 8 p.m,

Another cluster&*(! Avoided. But wait, there's more!

By Sunday, my mother has developed a lot of phlegm in her throat which is very hard for her to cough up because of all of the pain in her mouth, she is trying to cough it up, but its very painful...but even more painful is suctioning so she keeps at it. I notice a change in her breathing and tell the nurse so she can inform the doctor. The nurse does check and says her lungs seem to be clear. Then my sister shows up and fires me(not serious), since mom ended up back in the hospital under my watch. Hey, sounds good to me!

Monday I don't go in, but Tuesday I notice that mom is beginning to go down. When they suction, the mucous/phlegm is tinged with blood. Part of the reason is because of the sores, but it just keeps getting worse. One time she starts coughing and coughs up enough phlegm to almost fill the spit pan!

On Wednesday, I get a call from my sister. Mom has pneumonia and they are moving her to ICU. This is actually the first time that she had a “bad” nurse who wasn't watching her breathing. Sis called the charge nurse and everything moved very quickly...she was panting and we were told later than 15-30 minutes later, she wouldn't have been alive!

They took her to ICU, sedated her and intubated her...and our next saga begins.