Surgery #2, #3, bad drugs and Mother's Day!

Evidently I was in ICU for three days with a breathing tube. I barely remember it. I do recall waking at times and realizing it was still there and panicked. I was able to quickly reel myself in and always repeated, "Just go back to sleep" as I attempted the rosary. Once again. Me and the rosary. I don't think I ever got past one or two Our Fathers, but I sure did attempt it many, many times! I really remember very, very little of the following 9 days until the next surgery. My mind is completely shut to the memory. The truth is that I remember nothing, except for pain when I would awake periodically. Because I can't remember, I've asked my sister Ursula to "fill in the blanks" - this is what she has said:

"You went to ICU where we saw you before they left to come back to Westerly. I went to the hotel to sleep, only to wake and call the nurse at 5 a.m. to see how you were doing. A couple of hours later I was by your bedside for 24 plus hours. Because you were intubated and couldn't talk, you spelled out words on the sheet letter by letter. It was grueling to understand what you were trying to ask. However, after many attempts I understood you wanted to know the outcome of the surgery. I remember asking you if you really wanted me to tell you and you replied yes with a nod. I delivered the news that the surgery had not been completed because Dr. Glazer was concerned for your safety, as you bled so much and the dura was practically non-existent again. It all but killed me to tell you the truth. Part of me wanted to lie to protect you but I knew I couldn't do that. You couldn't talk but your eyes started to tear up and my heart broke for you. It was one of the most difficult times in my life. You continued to spell out words on the sheet. I felt so horrible trying to understand you, sometimes with little success. One time, after quite a time and much frustration on both our parts, I figured out you were having a hot flash! I then took off the covers and fanned you. I felt so good that I could help you in some way. When they took the tube out three days later, you were so happy. You so hated that tube! A day later you were able to have some liquid lunch and dinner. The following morning for breakfast you had a whole breakfast sandwich. It was great to see you eating but I really was wondering what was going on in your head. I was fearful of that. Didn't know how you were going to cope until the next surgery.


He called after the third surgery about 4 p.m. while I was waiting in your room. I could tell by the tone of his voice that he had good news to deliver this time. He told me that he was able to complete the surgery, without all the bleeding as before. He was confident that he had accomplished what he had set out to do. I sensed that he was quite relieved and told me to get something to eat as you would be in recovery for awhile. He did not call at any other point during the surgery. I was elated and proceeded to call the rest of the family with the fantastic news. I was allowed to see you in recovery a couple of hours later. I couldn't wait to see you. As agreed upon that morning, I would give you a thumbs up if the surgery was done. I walked over to you and gave you the thumbs up and told you it was over and successful. Your eyes were aglow and you had the widest grin ever. Couldn't tell if it went from ear to ear, as your head was wrapped in blankets because of the cool temperature in that room. I can't tell you how happy I was that it was over, as I don't know what would have happened if things had gone the other way. Thank God for the prayers and positive energy we received. At that point I took a long walk down to Fenway, had a bite to eat and went back to the room to wait. I was so happy I could have walked all night long! The adrenaline was flowing readily! What a great smile you had when you were rolled into that room. No more ICU for you. That was quite a relief in itself. A good sign at that."

I don't remember writing words on the sheet at all. At all. And I hadn't remembered the "thumbs up" or "thumbs down" part until she reminded me. I do now. Barely, but it is familiar. I must have been so frustrated when I had the breathing tube and couldn't speak and not knowing what the outcome had been after surgery #2 that I didn't want that to happen again if I came out surgery #3 with a breathing tube.

I remember mostly pain. I also remember that a day or two before Mother's Day, I was given a new mendication for nerve pain, I think. We are still not so sure what exactly happened, but I reacted negatively to it. Like I was talking NON-STOP, even through my sleep. I was having difficulty recognizing "real" time and "dream" time. I kept asking Ursula, "Am I awake or asleep?" or "Did I just make any sense?". Weird. I vividly recall a nurse telling me that they accidently gave me a double dose, but whatever the case, the medication was stopped either the night before or the morning of Mothers Day. Ursula worked like crazy to prepare me for a visit from my father and my kids after the ordeal. She says:

"On Mother's Day Erica came up with Dad, Ben and Aunt Mary. You were wide awake and looking forward to the family visit. You wanted to get cleaned up and look good for the family. You had taken that new medicine again before I left to get a coffee and some things for you at CVS. Upon my return you were in a deep sleep. It was difficult for you "to come to" when I tried to wake you. I immediately went to the nurse and told her that medicine had to be STOPPED as you were a complete zombie and not making any sense. I had all I could do to get you ready for the visit. I knew you didn't want to look like that and I knew I didn't want you to look like that. Especially not on Mother's Day! Didn't want the others to be stressed out. Tried to clean you up but they arrived earlier than expected. The nurse, aid and myself worked as quickly as possible while they waited outside. Finally they were able to enter. It was a precious moment. Bittersweet though.  I felt awful leaving you later that day, as I knew you felt comfortable and safe with me there. I felt the same way. But, I had to go back to work. It killed me. Actually, I hated to leave. Thank God you came to Mystic a few days later.

I do remember that Ursula left and my Aunt Mary came to be with me that day. I do remember one very awful night. No doubt, my Aunt Mary remembers quite well herself. I was in so much pain. SOOOOO much pain. The nurse, Diane Hicox, had always been wonderful to me. One of the few. I think I may have begged for more drugs, but she didn't budge. I just laid there and moaned and moaned and moaned. I must have driven my Aunt crazy. Diane came in with another nurse, a male. I can't remember his name for the life of me, but I liked him a lot. He was very, very strong so when they would adjust me or move me, it never hurt. I didn't wobble to and fro as with the female nurses. This guy was like a bull, and I could feel his brute strength and yet he was as gentle as a lamb. Sweet man. They must have tried to adjust my position ten times that night, but nothing helped. It was by far, the most pain. Finally, I knew that I had to settle down somehow. My Aunt Mary suggested I think of something else. As she and I laid there (I was in a private room to allow her to stay with me), I started a "story" in my head. I have no idea why (drugs! I'm telling you drugs make you WEIRD!) I thought of Princess Diana (like, why?) and I started on her life story. Or what I know of it! I clearly remember it started like this: "There once was a little girl named Diana, Princess of Wales. Diana was born to the Prince of Earl and Frances".........I couldn't remember the mother’s name. Hmmm......I mused out loud, "What was her name?". I asked Aunt Mary, "Are you listening?" and she said "Yes, but finish it soon! I'm tired!". I didn't know whether to laugh or cry. I continued my story, out loud mind you. She says I talked for hours. I don't know. I just remember that night as being one of the absolute worst of my life.

My next vivid memory was when I was told that they were moving me from the neurology ward in the Farr building back to the West Campus, Dr. Glazer's orthopedic ward!! Yeah! At last. I felt like I would be better off there as I was more familiar with the nurses there. I remember on that last day I had a Scottish nurse who seemed like quite the unfriendly brute at first, but as the day went on, we warmed up to her. I had a visit from the sweet PT, who's name I can't recall either! I was moved late afternoon/early evening, I believe.

We arrived and I felt really good about the move. We ordered dinner. Can I tell how SICK I was about that food. I think I had eaten everything that was offered and it was getting all too old. It almost made me sick to my stomach! I remember that Aunt Mary's hadn't arrived and we waited and she had to call and when it arrived, she couldn't even eat it. At that moment, she promised me that when I got to a rehab, she was going to get us a steak dinner worthy of eating!!! The nursing care was so disappointing. I had never had this particular nurse before, and she was not good! I recall my Aunt Mary saying, "I don't know why you were so excited to come here, it's not any better!” However, other than that night, any time I had spent in the West Campus had far exceeded being at Farr. Not saying much for the nursing care in that hospital, that's for sure. We finally went to sleep. Aunt Mary, for the first time, slept on a cot, instead of in the chairs in the room. Ursula had told her how uncomfortable the cots were and that the chairs were more comfortable, but Aunt Mary regretted listening to her and expressed how she had wished that she had asked for a cot earlier! The next morning, I awoke in excitement because I had been told the night before that PT would be coming in the morning with a walker and getting me up to walk! But instead I got another crabby nurse who wasn't all that helpful with anything who told me that she didn't know anything about PT! The next thing I know Dr. Glazer's PA came in and although I don't remember the conversation, I found him rude for the first time ever. My Aunt Mary said it's because I use too many words and take too long to ask a question! Well, she may be right, but toooooo damn bad, this is MY body, MY mind and suck it up!!! Then he came back with Dr. Glazer and I don't really remember anything about that conversation except my Aunt Mary commenting on his tie and her being upset because he walked away from her as she was speaking!! Boy, was she annoyed! I thought it was kind of funny, ya gotta know Dr. Glazer!

The next thing I know, the nurse returns and tells us I'm being discharged! Discharged??? I haven't even walked yet? Evidently, when insurance runs out, insurance runs out!! Oh the work involved in obtaining the ambulance etc. It was hectic. Aunt Mary was running around trying to get everything packed up and it was crazy. The ambulance arrived a little early and that was that.

The ambulance crew was great -wish I remembered their names, but I can't. Naturally. The guy drove with Aunt Mary up front and the young girl sat in the back with me. It was extraordinarily painful. But that sweet little young thing did her job well. She spoke with me the entire trip to Mystic. She did everything in her power to keep the conversation animated, all so to make the trip more bearable. Although I have no doubt that the driver was trying to be careful, in the back however, there were some curves that seemed pretty hairy as I lay on this little gurney. She would hop off her little seat and rush to my side and secure the gurney as best as possible to minimize any movement. Once she did even holler, "Slow down around the curves please!" and rolled her eyes at me. She was such a sweetie.

We arrived in Mystic! The story of my arrival is quite funny............