[Tim: Mary tells her story about everything that happened over the last few weeks that I first posted about in “When Medical Emergencies Attack Your Spouse”.]
Towards the end of June, my tummy started to hurt a little. By the beginning of July, it was a bit more bothersome, and on July 2, I had a really bad night. I assumed this was another diverticulitis flare, and told Tim I was going to go to the ER and probably get some oral antibiotics, and come home. The doctor told me it looked REALLY minor, and that 10 days worth of antibiotics would take care of it.
Except, the pain wasn’t getting better, and in fact got worse. I lived with it until the next Sunday… and then called my parents to say that I was going to the ER, that I would probably be put into the hospital for IV antibiotics, and could they please come and stay with the kids. I packed my little overnight bag with some pajamas and a pair of clothes to come home in, and off Tim and I went. The CT scan confirmed that the really minor place looked a goodly amount worse, but again, I figured there would be IV antibiotics, and I would go home.
I spent the next few days attached to IV antibiotics. My parents brought Dale Jr. to visit on Monday, and he climbed onto the bed and we snuggled. Everyone was very careful to keep him from doing me any damage, but I just hadn’t really started feeling better from the antibiotics yet.
On Tuesday, the surgeon came in and started up about surgery again. I looked at the man and said, “Look, you’re a surgeon. Everything looks like it needs cutting to you. I want a second opinion… by a gastroenterologist.” Enter the gastroenterologist on Tuesday afternoon, who began our conversation with “I haven’t read your chart.” I immediately bristled, and then calmed down when he continued, “Because I don’t want to be swayed by other doctors’ comments; I only looked at your scans.” I looked at him for a minute, and then he sat down in the bedside chair and sort of sighed and said, “You need to have this surgery. This place looks pretty bad, and it’s not going to get better.”
We set everything in motion for surgery, and suddenly, I was scheduled for Thursday morning! So began the inevitable “prep” for abdominal surgery – GoLitely is infinitely better than whatever it was I drank for the colonoscopy. Tim brought the J-man to see me Wednesday evening. The J-man took one look at me, caught Tim by the hand, and climbed up into my bed, and then pulled Tim down onto the bed. We lay there, 3 people jammed into too small a space, and the J-man wiggled until he was as close as he could be to me. The bed kept shifting, trying to figure out how to support the three separate weights on it, but the J-man went still as a stone, and we all lay there, me stroking my son’s shaggy hair, and refusing to cry.
Thursday morning I signed a release for about 6 different things, ranging from what was essentially a laparoscopic look-see, to a full-on open surgery with complete colon removal, and everything in between. I woke up at 3PM… I know it was 3, because I could almost see the clock and I asked what time it was. I was confused, because I knew it was supposed to be a 2-hour surgery, and I was pretty sure it started at 8AM! I was also in an incredible amount of pain. Before this surgery, having the J-man was probably my 10, on the pain scale of 1-10 that you get asked about all the time in the hospital. Compared to the pain I was in after the surgery, having the J-man was a ONE, and that recovery room pain still ranked about a 25! I begged for more pain medication, and kept passing out from the pain. The 3 people grouped around me didn’t seem to believe me – one said, “You can’t be in that much pain – you keep going to sleep!”! I started moaning, kind of like you learn to do in labor. I kept moaning because it seemed to help me a little and someone said, “We’re not giving you anything else. Be quiet.” And they all 3 walked away and left me there.
I have vague recollections of the next 24 hours. I hurt, so much, and when they gave me the Dilaudid pump, I focused on it, just waiting for the light to flash so I could hit it again. I remember a nurse telling me that only I was allowed to hit that button (I named it “My Precioussssss.”).
On Saturday, the nurses had the bright idea that I had to get out of bed. I had to walk, still attached to everything, even with the catheter. I made it to the door and turned back around. I also tried sitting up in the chair while my bed was changed. And then I was stuck in the recliner. Tim kept hitting the Call Nurse button, but nobody came. After an HOUR, by which time I was crying again, Tim physically moved me to my bed. (Good thing I lost all that weight!) Something like 5 minutes later, because it was finally time that I could ask for pain medication, my nurse Margaret (who looked and sounded like a Russian spy from the Bond movies) came in. Tim read her the riot act, and she showed him her pager… the desk had only delivered the last request. She gave me my pain medication, and swished out with barely controlled rage, and in two minutes the Charge Nurse was in my room. She closely listened to Tim retelling the story of me being stuck in a chair for an hour, and how Tim ended up moving me himself, and her eyes flashed. She wrote her name and extension on my board, told me she only lived 20 minutes away, and that if I called, even if she wasn’t on duty, she would be there in 20 minutes. I’m pretty sure the desk people are still trying to recover from what she had to say to them.
However, on Saturday afternoon, the doctors decided that my oxygen levels had remained constantly good for long enough, and I was off the oxygen… and allowed to have supplemental pain medication! Suddenly, I only had severe pain if I moved. As long as I was still, I only ached a little. Man, that was some good stuff.
On Sunday, my parents took the boys to their house, and Tim was able to stop flying back and forth between the hospital and home. I was hooked up with a PICC line and was getting TPN – Total Parenteral Nutrition – essentially, nutrition that bypasses the stomach altogether. The nurses told me it was 1700 calories per day (I couldn’t remember the last time I ate 1700 calories in one day).
I had to walk the hall several times a day – at first Tim said I had my “grim face” on. I was wearing the hospital gown, those slipper socks, and nothing else, and I didn’t care if the world saw my shining white butt because I was in so much pain. I white knuckled that IV machine and made it a little farther each time. The pain got a little better every day, and I was able to do 2 things before needing a nap. 2 things like eating and taking a shower. Or eating and taking a walk. One morning I tried eating, showering, AND walking… and then took a 6 hour nap to recover. My wonderful friend Melissa came by every morning and stayed for hours so Tim could go home to shower and try to keep our lives going. Tim’s dad came in the afternoons, and the poor man couldn’t get any rest because I kept having to go to the bathroom… and since I couldn’t close the door in fear of another occurrence like last November, he would leave the room.
Tim was with me every morning, and then every evening and night, and by the time I was able to eat, he knew every way to get to and from my room to pretty much everywhere else in the hospital. I would order food, take 3 bites, and then have to send it away. I called it the Toddler Diet. One night at 11PM, I suddenly got very hungry, so we trekked to the Room of Requirement (it had everything you needed) and had an in-room picnic of graham crackers and milk. He laid on the bed beside me a couple of times, making sure not to move, just so I could be near him and hold his hand. Looking back, I can’t believe how strong Tim was, and how very much he had to deal with.
After a few days trialing food, I got the news that I could leave on Saturday. I had been in the hospital for two weeks. Tim had been sleeping on a too-short cot for over a week, with his feet propped on the recliner. He was ready to go home too.
I’m now five weeks post-surgery. I’m still hurting some but living with it. I go back to work tomorrow. I am proof that you can live without your colon, and that Frankenbellies are OK.
I am also proof that my god, the support system you have will save you. I don’t know how we would have survived without my parents and Tim’s, and Melissa, and all the people who sent cards, and entertained me on Facebook, and the people at Camp Grace… People stepped out of their own very busy lives to make sure I spent about 2 hours total by myself at the hospital – seriously, 2 hours out of the entire 2 WEEKS I was there – and those 2 hours were near the end of my stay, when I could walk in the hall by myself and actually reach the call button if necessary. Those people made sure my kids were taken care of, that my husband ate real food, and that I was OK. I don’t know how to thank them enough.