I am Tallulah

Mother came through the second gallbladder operation, but it was very hard on her. She was in and out of conciousness for days, and the morphine she was given ended up causing much trouble. She almost died one day. I have spent the last 11 days at the hospital, in her room, sitting by her bedside, or in waiting rooms. These days have to be the loneliest I've ever experienced. Last night I became quite ill, probably because of the lack of sleep, and decided to come home today. Mother was angry that I was leaving her, but I couldn't take another night without sleep. Mother had hoped to leave the hospital yesterday but her wbc is up and they think she has a pocket of infection that will have to be removed. She is frightened, tired, stressed out, angry, frustrated. Her legs and feet are swollen and she should be walking to move the fluid buildup, but she won't do it. I am still very worried about her.

Thank you all for your prayer.

I am writing this to document the past few weeks.

On 29th March mother went to the Brantford General Hospital for day surgery to have her gallbladder removed. It was supposed to be laparascopic surgery, but they discovered that the gallbladder was much enlarged and had to resort to the more serious surgery. In the process of removing the gallbladder the bile duct was cut. The surgeon consulted with a specialist via phone while still in the OR, and a repair was made. Unfortunately the repair leaked, so the surgeon at BGH arranged to have mother sent via ambulance to McMaster Medical Center in Hamilton. A second surgery was performed and the bile duct was removed, the small bowel was stretched to replace the bile duct and the surgery was said to be a success.

While all this was going on mother was being given morphine, causing her to hallucinate. They kept her in an almost unconcious state most of the time. She was totally out of it for many days. They would ask her if she was in pain and she would say yes, so they gave her more morphine. I don't think she was in that much pain, but she wasn't clearly able to distinguish the real pain from what was in her mind.

One day they tried to get her to stand up, using this contraption that hoists you up from under your arms, and she completely zoned out on them. The nurse said one minute she was looking at her, the next she was staring blankly. They almost lost her when her vital signs began to drop.

So they stopped the morphine. This helped, but as mother became concious, she started to have hallucinations. Even the day we were leaving she was still seeing and hearing things that weren't real.

We were supposed to come home last Sunday, and the two main IV lines were removed. Then the surgeon said her wbc had gone up. It had been high since the surgery, and they had been giving her IV Cipro, but the day we were to leave it went up, so he said there must be a pocket of bile somewhere. Mother by this time was freaking that they were trying to keep her in hospital to experiment on her. I convinced her to stay, but just barely. Next day they did an ultrasound and apparently found a pocket of bile. Now this is where things get hazy because the surgeon says one thing, and his assistant says there "may be" a pocket of bile. At any rate, mother was scheduled to have a tube inserted, and then in a day or so would be able to go home with the tube still in and have home nursing.

The surgeon acutally wanted to keep her in hospital for a couple of weeks until it was all finished, but there was no way that was going to happen.

None of mother's family could visit because of the distance they would have had to travel, and I was having to sleep there every night because she was terrified to be alone.

Yesterday she was supposed to go and have the drain tube inserted. She had another IV put in, but in the OR she changed her mind and said she didn't want any more surgery. The surgeon was angry and said she was making an "irrational" decision, but he had to accept it. I was shocked. I tried to explain to her that she had this pocket of bile still that had to be removed, but she said the radiologist told her there was nothing there and that they were going to stick a knife in her that would move around inside her and maybe puncture her lungs. She was calm in her decision.

I, unfortunately, wasn't so calm and after trying to get her to see the real picture, left the room in tears. I called my brother and father who said I should make her have the operation. After speaking with them I called my aunt, who just hours before I had spoken with over the phone and who had told me my uncle went through the same kind of reactions as mother. He also came home with drain tubes and the home-care nurses came daily to handle the tubes. I told this to mother but she was determined to go home. After talking with the hospital chaplain I went back to her room, but couldn't stay there. I felt like the room was closing in on me and as I watched her sleep all I could think of was that she was coming home to die.

Later that evening the minister from the church I work for came up to sit with me a while. We talked and came to the conclusion that, short of having her declared mentally unstable and tying her to the bed and sedating her, there wasn't anything else I could do. I had to accept her
decision.

So she is now home. I spent a total of 12 days living at the hospital, watching her as she struggled with this, and praying she would pull through. Now I watch her as she is sleeping in her favourite chair, and all I see is someone who has chosen to die. And I have to accept this.

If the surgeon is correct, she will probably get sicker, and we'll either have to rush her to the hospital, or if she won't go, watch her die. If we do send her to the hospital again it will be the BGH, so her family can come to see her. She needed to have outside stimulation these last weeks and maybe she wouldn't have become so paranoid. Being at that hospital so long made felt like being cut off from the world. We didn't know the Pope had died, Chucky had married the Rottie, or that Prince Ranier had died.

She refused to do any walking at the hospital and now her legs are swollen and blistered from the post-surgery swelling. The nurses wouldn't offer her any positive support for walking. They said they couldn't help hold her because they might hurt their own back and then they couldn't help other patients. They told her she had to do it herself. She did walk a bit for the physiotherapists, but they only came twice. I managed to get her to walk only once, two nights before we left. She promised she would walk once she got home. It will take a long while before she has any mobility. We rented a walker for her and she has to use a commode chair because she cannot climb the stairs to the bathroom. It was all my dad and brother could do to get her up the steps into the house when we brought her home.

I am going to see about getting someone to come into the home to take her INR blood work next week because there is no way she is ready to go
to the doctor. The surgeon wants to see her in a week, but I doubt that
will happen. The staples have been removed and there are no other stitches to be removed so I guess she is here until something else happens.

She is still delusional and was telling my brother that I was yelling at her in the hospital and that I wouldn't let her come home. I pray that somehow her mind clears from this fog, but right now I am not hopeful of
anything.

I totally understand her fears and the panic she was dealing with. She
thought this was going to be a day surgery and she'd be home by evening. She wakes up, barely, to be told she has to stay in hospital, and then that they were sending her to another hospital, and more surgery, and she wakes to a strange place with only me, and it was all too much for her. Her state of mind fell apart over the days, and fear took over. If
I had forced her to stay any longer who knows what would have happened.

If there is bile still in her body it will get worse. This could be days, or weeks. If she refuses to go to a hospital again, she will die. There is nothing more we can do. We have to respect her wishes. She is cognizant enough to be able to make her own decisions, even if they are irrational to us, so this is where things stand.

Ironically, mother said the initial surgery wouldn't go well, and she said that there would be more things they would find wrong. She felt she
wouldn't pull through this whole thing before she ever had the surgery. Now she is saying to us to trust her that coming home is the right thing to do, and that the surgeon is wrong and that she will be okay. Who knows, maybe she will. I pray that she will.

Now we are trying to put some normalcy to our lives. Father and brother have taken too much time off work, as have I, so we will be getting on with it come Monday. We are happy she is home, but we are waiting now to see if her condition worsens. We can only pray that if it does there is still time to fix the problem and that it doesn't compromise her other organs too far.

Kinda feels like living with a bomb.