The tweets and Facebook updates started Thursday, April 1, when I asked for prayer because I was in the ER with a great deal of pain. You know that silly scale they ask you to use to rate your pain with 1 being “so-so” and 10 being the worst pain you’ve ever been in? I placed my pain at about an 7-8. The reason I call that scale silly is we all have our own pain tolerances. Considering I’d had 17 surgeries and lots of other medical “stuff,” my pain tolerance is pretty high.
That night started what would become a 2.5 week stay in two different hospitals and two major, emergency surgeries. I got home two days ago and have about a one to two-month long recovery ahead of me. I’m writing this blog to not only help my self recollect and process what’s happened in recent weeks, but to provide a chronology for the many friends and family who have been praying for me so diligently. There’s many who have come in on the story midway and may not realize all of it. I will warn you that this will be long, probably gross and not a fun read. But it’s important to me to write this and you are welcome to continue reading!
The first ER visit
That first night in the ER they ran blood tests and a urine tests, which led them to believe that all I had was basically a bad bladder infection so I was sent home with pain meds and antibiotics. I’m a slightly nuts person who hates wasting time and money, so I continued on with a two-day garage sale that started the very next morning (2 hours after I got home from the ER). I am very blessed to have a friend who I had already hired to coordinate the garage sale, so she did most the work. When we shut down that early Friday afternoon, I went to bed in agony and slept almost until it was time to get up again for the next garage sale day. I spent that day in so much pain and my fever kept getting worse instead of better. Both my husband and I knew this couldn’t be a UTI and when my temperature was 102.6, we finally decided it was time to go back to the ER. We left the garage sale clean up to my friend and went to the ER. It was Saturday, April 3.
ER Visit Numero Dos
The new doctor immediately ordered a CT scan of my abdomen and it showed two things: a hernia and what appeared to be a ruptured appendix. I was in surgery within 2-3 hours. Fortunately, they were able to perform the surgery laproscopically so I had only 3 tiny incisions. *Gross alert* It turns out that I was so septic and filled with infection that there was an area where I was going gangrenous. *Gross alert over*.
“Recovery” in the first hospital
After the appendectomy, the doctors were concerned about several things. For one, the infection had settled in the same area as my shunt tube. My shunt tube is something I’ve had since a child because of my birth defect. It pumps excess cerebral fluid away from my brain and it empties into my abdomen. It’s a very, very dangerous thing to get infected or have messed with in any way. Initial reports showed that it was fine, but this was continually monitored for the entire time I was in the hospital.
The problem after my first surgery is that I seemed to be getting worse, not better, even though it seemed that the surgeon had gotten all the infection out. I couldn’t keep anything down and quickly had to have a tube placed down my nose and throat to drain my abdominal cavity. This made it almost impossible to talk and I was not able to eat or drink. The tube also hurt because it scraped all the way down.
During this time, I made the sad decision to request that none of my friends or family come see me. I was so weak, could barely talk, looked horrible and was in an increasing amount of pain that no one could understand why it was happening. I felt rude saying “please don’t come or call”, but it was just necessary. I could barely hold the phone, let alone talk. Even the text updates I was trying to provide were hard…each one took 20-30 minutes to create even though they were only a sentence or two long each. Even if I hadn’t felt as bad as I did, I had so many nurses, doctors, other specialists, etc. coming in and out doing very painful or personal things to me that there never seemed to be a good time to have anyone there!
Friends still managed to drop off notes, cards, flowers without coming in my room, and many left messages for me on Facebook so I still felt very loved. I want all of you to know that you helped me get through this experience.
Still getting worse after a week
After a week or so, they took more scans and more tests, and realized that what they thought was causing the problem wasn’t it at all. I had a major bowel obstruction and it needed to be fixed. The surgeon who could do that kind of thing didn’t work out of that hospital on the weekends so I was transported to Springdale (a neighboring town) where a “big sister” hospital is located. This was Sunday, April 10. I still feel so, so, so incredibly blessed that the surgeon who happened to be on call that weekend was the area gastric bypass surgeon who can also do regular surgeries. For those who don’t know, I had GBS in 2005 and have lost about 130 pounds with about 70 more to lose. I was so thankful that someone who understands gastric bypass and is an expert in the field would be the one operating on me in that part of my body!
He tried to do the surgery laproscopically, but it proved impossible so I had to be opened up. I at first thought that the obstruction was caused by adhesions (scar tissue) from previous surgeries but learned later that it was actually the infection from the ruptured appendix that caused the problem. Talk about adding insult to injury!
I at first was under the impression that part of the intestines had to be removed and part of my bypass recreated, but I later found out from the surgeon I had misunderstood. Oh, and it turns out that I probably don’t have a hernia. What they thought was a hernia was probably just the obstruction….I dunno. I’ll ask about that later, LOL!
So this meant with both surgeries, I now had about 30 staples in me, with most of them being in the approximately foot-long incision along my tummy. I was sent back to the ICU in the new hospital to recover. I ended up spending what I think was five or so days there and they took very good care of me.
It was during this time that a lot happened. For one, my parents were so worried about me because I was not able to communicate well enough to give them much detail and the hospital wasn’t able to tell them over the phone so they drove down to get some answers. They were able to work out a system where they were able to use a password with my permission to get daily updates on me via phone so they only stayed a couple of days.
The other thing was, my inlaws were in town. I was so incredibly heartbroken to miss their visit, which we had all been planning for several months. They live in California and the only other time I’ve seen them was at our wedding more than a year ago. They also came to see me a couple times. I was embarrassed to be seen in that condition, but I was still glad to see them. John also came as much as he was able to visit. Everyone knew I was very sick, though, and only stayed a few minutes each time. I don’t think any of them realized this at the time, but the reason I never raised my head wasn’t because I felt so bad, it was because I was too weak to lift my own head. At this point I hadn’t had anything to eat or drink for more than a week.
During this time I also started having terrifying nightmares that were so bad that a cardiologist was called in to make sure that the changes in my heart rhythms were nothing more serious than panic attacks. They also realized that with me not able to eat or drink anything, I had been unable to take my medications, a couple of which can have messed up reactions to your mind and body if stopped cold turkey. The nurses figured out a way to get me the medicine through my tubing by crushing it up, etc. We also knew that the pain medication I was on was a key contributor to the situation so I was switched to something else. It helped tremendously. Eventually I plan on writing a book of short stories based on the various weird nightmares I had. Hey, gotta make some good come out of all of this, right?
It was around this time when I was finally moved to a regular floor and I have to admit, I was actually scared to have more privacy. In the ICU, I could see my nurses at all times. I felt connected. In a more private room, I was scared I wouldn’t be listened to or somehow not helped as much. Much to my happy surprise, the nurses and other folks on the surgery/medical unit were wonderful! They did all they could for me and I felt in good hands.
I met daily, sometimes more than daily, with people from respiratory (still struggling to breathe because it’s so painful!), physical therapy, surgeons, nurses, and a whole bunch of folks. It was somehow during this time that they had to install a central line under my collar bone to “feed” me nutrients because I was still unable to eat or drink. I was not able to because I still had tube in my throat. I was getting weaker and weaker after more than a week (10 days maybe?) with no nutrients and so they fed my through this central line. The problem was, the central line ended up going the wrong way. So, a couple of days later they had to try again but this time it was in my neck. That one fortunately worked.
The rest of the time was a blur of sleep, pain, people coming in and out, etc. I still was asking for no visitors because I was in no condition to be around anyone.
Slowly, I improved and on Friday, the surgeon said the magic words. He thought that if I did OK over the weekend, that Monday it might be time to discharge me. The thing was, we didn’t know to where. There was a pretty good chance I would be sent to a rehab center to recover where I would have constant supervision and help to recover. Or, I could be sent home with a home health care nurse.
I was disheartened and frightened over the weekend (April 17-18) because I started having more pain and was still unable to get around at all. Sure, I could lift my head now. But I couldn’t get in or out of bed or even scoot up in bed by myself. I had somehow pulled a muscle pretty bad in my back and that hurt worse than my abdomen.
Home, Sweet, Home
Monday, April 19 finally arrived and I was evaluated by I don’t know how many people. They determined that they thought I would be able to be OK at home with some supervision and regular visits from a home health care nurse to address my medical needs (I had developed sores on my skin while in the hospital bed for 2+ weeks plus I have several incisions); a physical therapist to help me regain strength; and an occupational therapist to help me regain normal other functions such as bathing, dressing and well…what most of us consider living independently. John, my wonderful husband, is using up the rest of his vacation to stay with me a week because he realizes I’m not well enough to be left alone for any longer than 30 minutes. I’m just too weak and fall too easily.
All in all, I have to say this has been a very tough experience. It’s been tough physically, emotionally and financially. Before April 3, I’d had 17 surgeries and within a week’s time I increased that to 19. This has been the most difficult recovery in my memory. A hip surgery I had at age 9 was pretty bad, but some how this almost seems worse. I think part of me feels like I should be recuperating so much faster, so much better. But I have to remember, I had two major, potentially dangerous surgeries within a week from each other. I also have to remember that I have one incision that is a foot long. I have to remember that it was only a week or so ago that I couldn’t lift my own head and it was only days ago that I was only strong enough to sit in my wheelchair for an hour or two at a time. I can now sit up for hours before I have to rest. The pain is getting better, in fact I’m relying on regular over-the-counter Tylenol during the day.
I’m getting better and will continue to get better. God is in control and he’s surrounded me with people who love and care for me dearly.
Thanks for letting me share.