Lots of time in hospital waiting room!
Hello my friends. I sent a letter out to most of you that said this:
Dear friends;
Due to my mother's emergency surgery last night and now critical condition, I probably won't be contacting people for a while, as our hospital's new policy requires that I stay with her as much as possible, or find others who will visit if I can't, because those without an advocate/witness get ignored, due to lack of staff. She is not expected to get to the same level of strength that she had before this month's many hospital stays, (which was not much anyway) so this will mean a huge lifestyle change for us, if she survives.
You can write to me, and I appreciate any prayers or encouragement, but please be patient if it takes a while for me to reply.
Thanks, I love my online friends.
Sheila
That generated masses of emails and questions that I have no way of replying to individually, because of lack of time and energy. I decided that my blog is the perfect way to post updates and also fill people in on the details that happened, and answer questions. I have been with her 8-15 hours a day, then just come home to collapse, so not much time or energy for anything else but bare survival.
The only reason I can write this now, is because I am home collapsing. The Lord has been kind to carry me this week, but without food, water, enough sleep, all the physical and mental stresses does drain a person, even a healthy person. Today she was also much better, got past the helpless stage where she needed water and lip moisturizer and other things done for her. She can now do them.
I did not get to recover though. Got a call from our landlord. He is obsessive compulsive and has some dementia, he is over 80. He wants to bring a repairman to fix something that can be postponed. I told him that it is not a good time, can we delay? And he said that if I am not home, he will just come in on his own. Well, I don't want him looking through all our drawers and closets and chastising us again about what he THINKS our house should be like. Our house is quite clean, but due to health, it's not perfectionist clean like he demands. He needs to see some of those TV shows about HOARDING, then he would realize that we are almost perfect renters. We have to obey this man and toe the line because he could easily evict us and get $400 more for this house than what he charges us. So I will spend most of my energy cleaning up. I really don't have the strength for this. I put an ad in the paper for a housekeeper because of our weakness, now I have to do it anyway. Then when he is here, he always exhausts me with commands of getting this or that for him, moving this or that, lifting this or that. I told him last time I couldn't do anything else for him. I was wearing my oxygen at the time too. I am writing a few sentences, then clean for 5 minutes, then write more, then clean more, etc. etc.
WHAT HAPPENED???
For those of you that never got the whole story, this is how it started. Mom has had a colostomy for 35 years. She has needed it repaired for more than 20 years but surgery was too dangerous for her, so she can digest very little. She lives mostly on Ensure nutrition drink and other easily digestible foods. When she eats more, sometimes she's lucky and it digests, but every month or 2 she was in the E.R. with a blockage. It was getting more and more frequent. She also has lupus and heart failure and other health problems.
2 weeks ago today I went to the E.R. for uncontrollable pain due to my TN-trigeminal neuralgia. (See http://tinyurl.com/TNwiki).
When my pain gets that bad, my heart rate goes so high that my heart has stopped, so they usually get me taken care of right away so my heart won't stop. These heart stoppages are not considered heart attacks, because they don't cause any heart damage, but they can cause death if I'm not revived. Fortunately, either the E.R. or God has continued to restart my heart. I was supposed to get a pacemaker in 2007 but Canada decided they would not spend that much money on a person who is on disability. Their quote, "Not for a person who is not contributing member of society." Well, I am a contributing member of society, worldwide, but they are thinking in terms of me earning a living and paying taxes. Since I have found that God keeps restarting my heart, I would rather NOT have a pacemaker. God will take me when HE'S ready. So anyway, they put heart monitor on me in the E.R. that day, did an ECG and blood tests, and asked me when I had a heart attack. I said I didn't know that I DID have a heart attack. The nurse said that my tests show that I did, and that it was within the last 3 days or so. I now have significant heart damage, but it's not from blocked arteries or anything, just from that TN pain, so they can't really do much to prevent it from happening again except keep me on strong pain meds, to make sure my pain doesn't get that bad again.
The Dr. sent me home within 2 hours, and I was shocked. I don't even get sent home that fast for other reasons I visit the E.R. I got home and looked online for "heart attack recovery" and it said that I was to be kept in ICU and watched for risk of stroke or another heart attack, then SLOWLY be allowed to do activities such as walking to the bathroom, and increasing slowly for a week or 2 after, then put into a heart rehab program. Anyway I didn't know this, so I was walking the far distance to my car, and stopped at the bank on the way home.
2 days later, Mom told me she needs to go to the E.R. She was having feelings that are stroke warnings. I told her that I was too sick to sit beside her, and that I needed the E.R. too. My chest pain was back and I could barely breathe. So the ambulance came and took us both. They decided to admit us both. Then my Dr. came in and told me about some new hospital policies, and that patients who don't have an advocate or witness with them most of the time, just get ignored. There are just not enough nurses to do all things for all people. I said that I wanted to sit with my mother and protect her. I asked if we could be in the same room, and they said no. So I got discharged and started caring for Mom. Mom was there for 4 days. They decided that she was so dehydrated, that this was probably the cause of her stroke-like symptoms. She started vomiting violently while in the hospital. We tried to figure out if it was one of the new medicines causing it, or other causes. Her Dr. came in and discharged her! Her nurse talked to the Dr. and said "She is sicker now than when she was admitted. She is still on IV fluids and can't even keep water down. She is vomiting A LOT! I don't think she is in any shape to go home!" He didn't listen, so I took her to the car in a wheelchair while she was vomiting into a bag. People looked strangely at us, as if they were thinking "She should be going INTO the hospital, not out!"
When we got home, we fought with it for 4 days. I stayed by her day and night, doing whatever I could, praying with her. I asked if she wanted to go back. She said she only wanted God's help, because she was too sick to go there and get sent home again. They won't help me. They are trying to get the most expensive patients to die, so the government won't have to pay for all their medical bills."
Soon she couldn't bear it. She told me to call the ambulance. After some tests, the surgeon came in and started asking us questions about what would be her wish if she died? Does she want to be put on a machine or not, and many other questions. I asked "is there a chance she could die with this?" The surgeons here are legally bound to disclose all of the risks of any procedure, so they said she would probably die within 6 hours if she didn't have surgery, but would probably die with the surgery, so if she dies on the table, how much intervention does she want? If she gets full intervention, the rest of her life she might be a tube-fed invalid, or a stroke victim, or on a life support machine. She read the paper and made her choices, and decided that surgery was SOME chance of living. Otherwise she would die within 6 hours without it. It is her worst mortal dread to have her genius mind locked in an invalid or stroke victim body. I went out to call family members, and when I got back they were wheeling her to the operating room. I said "Wait You just told me she is going to die! I want to hug her!" They wouldn't let me so I just rand along side saying I love you, and I truly thought I'd never see her again on this earth, she was crying as hard as I was. I sat in the surgery waiting room alone. I didn't know if it would take 1 hour or 20 hours for them to come out and tell me she is gone, or that she had a stroke or something.
I was praying, and so upset that I didn't have even one friend in this city who could come sit with me as my mother is dying. 45 minutes later the Dr. came out, and said she had NO dead bowel. They had opened her up for NOTHING! And not just a little 3 inch hole, but from ribs to bottom of belly.
So now I was so angry at the first doctor that sent her home while sick, which we thought caused her bowel to die, and mad at the surgeon's hasty pressure on us and false diagnosis of dead bowel, and convincing us she would die. Now she is suffering with the pain she had before she went into surgery, and the surgery pain as well!! We felt truly traumatized, we had truly believed we would never see each other again until the spirit world. The Dr. is now telling us that she will NEVER recover the strength she had 2 weeks ago. That was almost no strength, so now her whole quality of life has been compromised. Her sisters are 92 aned 94. She is 78, so it's possible that I will have to care for her in this invalid condition for 15 years. She will be tube fed through a vein for months, then a tube into her stomach, and I'll have to pour in the Ensure into the tube. Then when she has a bowel movement, it will come out into a bag on her side. She already had that, but sometimes it explodes all over the room. Mom was able to deal with it because I am always nauseated anyway, so that will just make me sicker as well. Our future looks as if it will be too much for us to handle.
I am thanking the Lord for carrying me for all those days that I stayed with mom at home and at the hospital. But I never got a chance to recover from heart attack, which will cause MORE heart damage, so we are both in trouble, with no one to help us unless we win the lottery so we can hire a nurse and housekeeper.
Will continue another day. YOUR PRAYERS HAVE ALLOWED ME TO DO ALL THIS! I know the power of prayer, but it feels like there is a limit to what our bodies can endure, so it feels like we might both die soon. Maybe me first, because she's getting closely supervised medical care. I'm not even able to get meals or enough rest or pain control.
On Sunday, my brother told me HE was supposed t have surgery on Monday. I had no clue how I would take care of both of them, since this Dr. told me not to leave anyone alone in the hospital. More feeling overwhelmed and lost. Then he postponed his surgery. At the same time, he had about 5 things go wrong with his house during this unprecedented rain, and had to go back and forth from the hospital to his house to meet different repairmen for different problems. He has too much all at once too. On Tuesday, HE was having heart palpitations and pain, couldn't think clearly. His legs almost went out on him from the long distances we have to walk in the hospital. I was ready to get HIM checked out. He is anorexic, so I'm sure he is severely dehydrated too. I talked him into drinking a bit more during the day and it got better.
Will continue another day. YOUR PRAYERS HAVE ALLOWED ME TO CARRY ON! I know the power of prayer, but even with prayer, this week it feels like there is a limit to what our bodies can endure, so it feels like we might both die soon. Maybe me first, because she's getting closely supervised medical care. I'm not even able to get meals or to control my pain or to control the huge amount of walking necessary when visiting Mom. Oh well, one hour at a time, and lots of prayer, and my online friends, will get me through. OH YEAH! I GOT A PARKING TICKET at the hospital! It just seems like so many pressures at once that it feels like Satan's trying to kill me.
Bless you all!
Sheila
