E. coli, Bedbugs and Appendicitis
2 weeks in the hospital - Written in 2016
I was kissing my husband goodbye when a nurse came into the hospital room “Your abscess tested positive for E. coli bacteria, and we are going to have to move you to a new room. Anyone that comes in your room must wear gloves and a gown.”
“But the results came back yesterday, it has been 36 hours already.” I protested with a disbelieving laugh. “Well, we have cancer patients here that we don’t want them to catch E. coli.” she replied haughtily. It was 4 pm in the afternoon. “OK “I said. Utterly flabbergasted by yet another indignation in this long ordeal that began 9 days ago. Commencing with a trip to the emergency room for a “routine” appendicitis operation.
The abscess was removed on April 1 Friday. Today, was Tuesday, a full 5 days after the abscess was swabbed. Wow, I thought to myself, I was potentially carrying around E. coli back to my house and family for a full 5 days before notification.
The prior evening, Monday at 7pm my husbands’ NG (nasogastric) tube, a literal up your nose with a rubber hose lifeline that vacuums all stomach contents out through your nose to a container on the wall stopped working. He needed this device to keep from continual vomiting. At 9 pm Monday he said he felt nauseated again. The nurses changed every piece of equipment attached to the NG tube, except the tube itself. Finally surmising there must be nothing left to suck out. Then why did he feel nauseous? He continued to feel worse and worse. Luckily for us we had one diligent nurse who was able to get a doctor from another floor to come up and look at the equipment at 12:30 am. A feat no less difficult than climbing Mt. Everest, I am sure.
The doc took one look at the tube in the nose and said, “this is a pediatric tube”. “What?!” I thought. The doc continued, “This has to come out now and we need to put an adult sized tube in.” Putting in an NG tube is a very unpleasant experience. It is shoved down the nose as you swallow water and the person inserting it must push it past the patients gag reflect while the patient coughs hacks and has tears streaming out of their eyes. The doc explained sometimes the nurses think it is easier to use the softer tube, but as he said, “it’s uncomfortable with a tube down your throat so what difference does it make what size it is.” Sure, doing it twice is even better.
This hospital stay started in the middle of the night the Saturday before Easter. I was dancing at a party when my husband called me and said he needed to go to the emergency room for possible appendicitis. I ran out of the party, picked him up and took him to the emergency room. The sign outside the ER said 10 minutes wait time. We were admitted about 10 pm. A routine CT scan revealed yes it was appendicitis and the operation started at 3:30 am or so a full 5 ½ hours after we arrived. So much for 10 minutes service. I guess the wait time don’t include the part where you sit and wait as actual time. It must be some kind of bend in the space time continuum known only to ER’s.
About 5:30 am the doc came out and explained she had removed the appendix, it was a difficult surgery, the appendix was quite inflamed, and she needed to clean out the abdominal cavity. She was not able to do a lathroscopic surgery but a full open abdomen. A drain was also left – called a JP drain - basically a tube that goes into the abdomen with a small grenade like device that sucks out fluids.
There was a lot of bleeding, but she was able to take everything out without removing any bowels or intestines. Then she disappeared into the early morning hours, never to be seen by me or my husband again. Maybe a sense of guilt kept her away. No one will ever know.
Phew I thought that was close. She said he would be in recovery for 45 minutes and would be sent to a room after. I waited for about 50 minutes and didn’t hear anything so tried to get someone from surgery to open the door so I could check him. No luck. I went to the front of the hospital and called information where I found out what room he was going to be in.
They were just wheeling him in from recovery when I arrived. He was a bit disoriented but was alert and recognized me. They were injecting him with Morphine as they hooked up all the equipment, blood pressure cuff, pulse oximeter, and various instruments to monitor vital signs.
Immediately after injecting him with the Morphine, he said “I’m hurtin’ I feel little crampies all over my whole body.” They said that should subside. Nothing left to do now but wait. A few hours passed and he said he was still hurting, and he didn’t feel anything from the Morphine. The nurse explained he could have more Morphine at 4 hours. 4 hours later more Morphine, more pain and crampies worse than the first time, and no relief from the pain of surgery. 6 hours total had passed as the nurse checked on him, I requested a different type of pain medicine because obviously the Morphine was not working. The nurse came back with a drug called Dilaudid a synthetic Morphine. This seemed to do the trick and he was able to get some much-needed sleep.
This went on through the day more Dilaudid, pain went away etc. In the evening they came and got him out of the bed so he could use the bathroom. Painful, but he was able to do it.
We cruised along for about 48 hours post op with the ever-present question “did you pass gas yet”. No not yet unfortunately. The doctor that performed the surgery never showed up. A new doctor came in on Monday and said he was ready for some soft foods. “Weird I thought to myself don’t they do clear liquids first?” I brushed off the thought as insignificant, since it was the doctor who recommended. He tried eating wasn’t really all that hungry.
Overnight Monday to Tuesday morning, he started writhing in pain about 1 am. His upper intestines were in pain. I called the nurse and she said she could give him some Morphine. Didn’t I go through this? No Morphine it doesn’t work and makes him hurt. Well, it had only been 2 hours since his last round of Dilaudid and he couldn’t have anymore. I asked if the doctor could come and see him. No answer, please I think the doctor should see him. The JP grenade was filling with so much fluid it had to be drained every 2 hours. To me that seemed like a bad sign. I know I am not a trained physician, but excruciating pain and fluid in your abdominal cavity don’t seem like a good thing to me. The nurse left the room, and I watched her walk down the hall. By chance there was a doctor nearby walking down the hall, the nurse flagged her down and spoke to her. She was only 100 feet away from the room but did not take the time to come in and take a quick look at my husband. The nurse came back in and said my husband could have Toradol a type of NSAID. We had to wait for the information to be added to the Computer first. Whatever the doctor orders, does not exist in the universe until it is in the Computer. The nurse game him the Toradol and he had some relief.
Tuesday more of the same no gas, pain Dilaudid and Toradol. Then suddenly the Dilaudid started to cause pain whenever it was injected. I asked if they could stop giving it to him and just do the Toradol. Sure, they said. Maybe he should not eat the soft foods and he was put back to clear liquids.
His pain seemed controlled, and they advised us to walk around as much as possible.
Wednesday, I go home for a bit to see my kids, take a shower get some fresh clothes. My husband is due for his NON-Opioid medication at 9 pm. We made sure to say he does not want Opioids they can turn off your digestive system and he still has not passed gas or gone to the bathroom. When I arrive about 9:45 pm he restless, feels terrible, itchy, sweaty, moving around, he seems to me like a drug addict going through withdrawal. We call the nurse; she says he can have Toradol. Isn’t that he just had at 9 pm? No, he had Hydrocodone. “What” I didn’t even know the Computer had authorized the use of Hydrocodone, another Opioid. These Opioids will kill you. Are they trying to get him hooked on pain meds? I say yes let’s give him the Toradol as I am thinking that’s what he should have had before. Now I am dealing with someone who feels bad and is having a reaction to the opioid they have never taken before. I say let’s walk and I don’t mention the screw up to him, he is going through enough. We walk for a bit and get back to the bed.
Wednesday overnight my husband wakes me and says he is in pain again. He complains his upper GI area is in pain and he doesn’t know what it is. He is not sure, but he feels like he might throw up. The nurse wants to give him an anti-nausea medication. But there is not one authorized on the Computer for him, so she needs to call the doc on call to get the order in to the Computer. I ponder the reality of this hospital where it is more of a virtual world where all things medical happen on a screen and what is live before your eyes doesn’t exist. A strange parallel universe where the real world is fake, and the virtual world is real. We decide to walk around as this seems to make him feel better.
We walk until about 3 am, then he rests. Thursday it all goes to hell.
About 11 am my husband is really complaining about pain and feels terrible he wants to go to the bathroom. I take him in and here this horrible noise. He starts vomiting everywhere. I run out and call the nurse. Thankfully it is the middle of the day so there are plenty of folks around. If this had been night, we would have been screwed because there is no doctor to see patients and the Computer can’t tell the nurses what to do. The Computer can only diagnose an OLD problem, it can’t help with new problems. There must be an app for this.
My husband gets himself back to the bed, the nurse runs in and sees the vomit she puts an anti-nausea medication in the IV. About an hour later he stands up and starts vomiting all over the floor.
The surgeon who is managing our case happens to come as he is doing his rounds. He tells my husband he needs an NG tube. The same doctor who said it was OK to eat soft foods before passing gas after an abdominal surgery. The nurses place the tube (the pediatric one) and hook him to suction. He stops vomiting but nothing is coming into the canister. I am getting all kinds of questions from my husband’s family who I have been in constant contact with throughout. My aunt tells me I need to order a GI consult. I request one with the nurse, she says she will tell the doctor.
About 1 pm the nurses tell me my husband needs an X-ray to make sure the tube is placed correctly. 2 pm passes then 3, still nothing is coming out of the tube and my husband feels terrible. I am getting nervous because I know at 7 pm the shifts change and there is just not that much staff around. I ask the nurse about the Xray. She checks finally they show up to take him down for the X-ray. They unhook the NG tube and not more than 60 seconds later puking starts again. When he stands up to puke the NG canister starts to fill up. All the way to 1000 cc of liquid. He finally starts to feel better when it comes out. They inform me they will have to bring up the portable X-ray. How freaking long is that going to take? They take the portable X-ray. 5 o’clock passes 5:30. I ask for the results, apparently, they were added to the Computer. No one has looked at them yet and the Computer, although it runs the medical care, doesn’t talk much. Turns out the NGI tube is coiled, and they need to pull it out bit, so it suctions properly. Thank God they did this before the shift changed. I run into the doc by the elevators. He tells me he doesn’t think we need a GI consult until we get about 7 days out and this is normal.
Next morning Friday. He feels like a million bucks. They order a CT scan and X-ray. He is feeling good no more nausea, mobility is good. Then the doc walks in and announces my husband has a small bowel obstruction with an abscess. The abscess is in a place where they cannot drain it with needle. They must reopen him to clear it out. Oh SHIT.
I am about lose it I’ve in the hospital for 6 nights at this point. I have slept very little; I am under a ton of stress. I have 2 kids I’ve been juggling, plus I can’t leave the hospital overnight for a second, in fear they are going to make a mistake. I really must hold it together. While they are prepping him, I am adamant NO MORPHINE. Ok they put it in the Computer and put a red wrist band saying allergy.
They operate on Friday at 1 pm, we are basically back at square one. Doc says he cleaned out the abscess and did not have to take any intestines. The bowels were red and angry, and in his opinion, things should get moving now. The doctor wants to start him on some IV nutrition because he hasn’t eaten in about 10 days.
Saturday more pain meds. I am adamant NO MORPHINE. They put him on a pain pump with Dilaudid. It’s a day as expected, pain from surgery no passing of gas. The nurse comes in to change the dressing on my husband’s surgery wound. They have left the incision open to heal from the inside out. I assume – incorrectly – the wound will be stapled or stitched or something in a few days. I leave because open surgery wounds are just not my thing. The doctor tells the nurse the dressing needs to be changed once per day. I ask about the IV nutrition the doctor ordered the day before. The nurse mentions something about a PIC line. A special type of IV to give him the IV nutrition. It never shows up. In the evening the nurse comes to change the dressing. My husband and I tell her the doctor said to change it once per day. She informs us the Computer says to change it three times a day.
Sunday more of the same. I wake up from my sleep in the couch with a new friend attached to me. I had these bites on me, and I feel one on my leg. I look down and there is something attached to me. OMG it can’t be. Yes, a bedbug is attached to me at the hospital. How extremely disgusting. What the heck else can go wrong. I head to the store to get some plastic bags to wrap up my stuff in. I don’t want the bugs to come home with me, so I plan to just throw out all the bedding and blankets I have taken to the room. I keep the little bugger and take him home in a plastic jar, just in case no one believes me. I don’t tell my husband he doesn’t need to hear it right now.
The doc stops by and actually talks to us for more than two and less than 5 minutes. I find out he works 7 days on and 7 off. Today is the day before the 7 days off start, that explains the good mood. He changes the dressing for the wound. I see it briefly, HOLY SHIT I think to myself that is a 4 maybe 5 inch wide cut about 8 inches long. What the heck? Is this the Middle Ages? Did King Arthur gut him with Excalibur? I mention the overnight nurse already changed the dressing. Apparently, the doc couldn’t find the rule to change it once per day in the Computer so he used 3 times instead. No harm in this mistake at least. I wonder if it wouldn’t be easier just to get a pad of paper stuck to the door instead of using whatever software they are using. My husband begs for water or anything. He hasn’t had a drop since Friday morning. Doc tells him he can have ice chips. Hey this is service. A bit later I go out in the hallway and ask for the chips. I am denied. Unfortunately the doc didn’t have time to put the info in the Computer yet…. I argue successfully for the chips. I ask the nurse again about the IV nutrition, they tell me nothing. Late in the day, finally the PIC line is inserted, but no nutrition - 48 hours after the doc says they were going to give it to him.
Monday maybe today we will see some progress and start to think about getting out of here. A new doctor is visiting us, starting I assume his 7 days on. They start IV Nutrition. I go home to visit my kids for a few hours they want me to stay with them and they hate me because I am not home and missing their life. I talk to my husband on the phone before I leave the house. He feels NAUSEA. Oh lord I think, not again. I tell him to call the nurse and I tear out of my house to get to the hospital. The clogged pediatric NG tube is replaced, I fall asleep at 3:30 am dead to the world, even when they come in for vital signs and blood. I sleep through the whole thing.
Tuesday morning my husband is not sleeping because of all the beeps and cleaning and whistles and vials of blood. He hasn’t sleep more than 3 hours in 10 days. How can you recover like this? Can’t they move these people together as a group, so they don’t have to continually wake up those who need to sleep. Technology hasn’t really helped in that department it’s made more beeps whistles and general annoying sounds.
The new doc stops by and lets us know today’s x-rays show no progression. My husband has another complication called an Ileus. Basically, the digestive system shuts down. He orders some lozenges for my husband’s aching throat. It’s not easy having a tube down your throat for this much time. The eColi information comes our way. Our cousin has agreed to stay overnight so I can sleep at home. He tells me they didn’t move my husband until almost midnight. From 4 pm til midnight to transport him to a new room. Hopefully no cancer patients contracted eColi. Honestly, I am wiped and need the sleep, I drink 2 glasses of red wine and collapse in bed.
Wednesday a new day, my in-laws have been concerned about the events and what I am doing. I can hear in their voices and see in their texts they think I just totally suck as a caregiver. I don’t think they realize how hard I am trying and how freaking exhausted I am. I soldier on.
The doc tells me to get him up and let him take a shower to get those bowels moving. I imagine that shower must feel so AWESOME. I grow weary of being here and start calling every single person I can who might know a GI person, RN, MD, Dentist, Veterinarian, Welder anyone who might be able to tell me when we are getting out of here. I text my tennis coach at my tennis club. The coach went to the University of Miami with someone who is a GI specialist and supposedly one of the best in the country. I text him and ask if I can have his phone or get in touch somehow. He says he will look into it for me.
Wednesday night no relief he has bad acid in the stomach from the tube. I call the nurse in the night. I ask for a doctor (remember last week with the abscess). She tells me no there’s no doctor to see you and offers an anti-nausea medication. Unfortunately, no medication is authorized in the Computer. So, she needs to get an approval. What about the one they gave him last week? Don’t see it in the Computer. Maybe that Computer is a sentient being after all.
She gets the approval and gives him the anti-nausea meds. It helps but wears off in 2 hrs. I call the nurse again; I think a trainee nurse comes in and she offers him… Yes, you guessed it MORPHINE. How many times have I said no Morphine. He even has the allergy bracelet on. Is Morphine the answer for everything in here. They want to keep you doped up on Opioids til the morning when doctors come in? I ask for the Toradol. They can’t find it on his chart. For god’s sake he took it for 3 days solid.
As another sleepless night descends, we are talking as the nurse sorts out the chart for Toradol. My husband complains of an acid stomach. I ask for an antacid (TUMS PLEASE), and they go ask the Computer if it is ok to take a Tums. A few minutes later the overnight tech does the nightly vital sign check, which now includes blood sugar due to the IV nutrition. His blood sugar is higher than 150. The nurse comes in about 30 minutes later and and starts to give him Toradol. She starts asking him his pain level. My husband picks up on this and says he doesn’t want pain meds he wants the antacid. OK I’ll get you the antacid and your insulin. What???? Insulin? Now he’s getting freaking getting diabetes?
For me this is it. The longer we stay in here the bigger chance of something else going haywire, some mistake or a new drug that causes something even worse. Like a blood clot, stroke, or some kind of infection. You can see real fear in the eyes staff regarding the potential of catching Pneumonia. In fact, they gave my husband a device so he can practice breathing and exercise his diaphragm. I can smell the fear of Pneumonia and it completely unnerves me. We must get out of here and soon.
The time is very early in the morning 4 or 5 am. I decide in that moment we must have a GI or someone must give us a second opinion. Or even move to another hospital or I don’t know what. I have had enough of this. I sit there calmly waiting until 7 am. I lie down for a few minutes, sleep doesn’t come. My husband gets a few winks.
My husband wakes up around 6 and tells me to get some rest. I can’t I just can’t. I go get a cup of coffee and open up a pad of paper get a pencil and plan my course of action.
I have a friend who works at the Mayo clinic in town. I want Mayo to review the record. I turn my focus on to expedite his discharge. I text around to my friends for advise and discover an a mutual acquaintance works at the hospital and is a patient advocate. I call him and tell him I need the medical records, so I can potentially make a jailbreak from this place. He tells me where to go and who to talk to. Next, I text my friend who works at Mayo that I need to speak with her. I go downstairs to get the records. They open at 8 am. I get more coffee.
My friend calls and I tell her I want to get a second opinion. She tells me to get the medical file they should give it to you in the office and she can have someone look at it. I go to medical records department. No one is there but the lady makes me wait anyway. I explain I want the records. She tells me they don’t give them out a third party manages the records and my husband will need to fill out some paperwork. They should send them to us by mail in a few weeks and they are VERY expensive, I don’t know how much per page she mentioned. I could care less if they want to charge me, but I need them now I want to get a second opinion. “ Well have the doctor contact us.” I can see she is just not going to help me at all.
I go back upstairs and text and call back my friend the advocate and I tell him what happens. He thinks for a second and tells me my primary care doctor should be able to get the records. I call him, he is a friend and has helped out quite a bit during this time. He tells me he doesn’t have direct access to the medical charts.
I explain the situation and that I want a second opinion. He gives me the name of the GI who would see the case IF the hospital requested them. We hang up and I go to my husband’s room. I remember a friend of mine is a pharmacist at the hospital. I text her and tell that my husband is now being given shots of insulin. She tells me she will stop by the room. I go back to my husbands’ room. The physician’s assistant comes in for the daily check. I tell her I want a GI, this gone on long enough. I can see she feels a bad, she is embarrassed. She is a nice person.
All the nurses and physician assistants, with the exception of one very incompetent nurse, are nice people trying to do the best they can. Unfortunately, being nice doesn’t erase the errors, miscommunication and outright mistakes. I feel for these nurses some of them come into our room and don’t even know what procedures my husband has had. Communication is fragmented at best. It is up to me and my husband to communicate the story of what has happened. Communication is left to the Computer in the corner of the room.
It’s Thursday, I wait. I have exhausted all the resources I can think of at the moment to push on. My friend the pharmacist comes in, she brings another person with her, another pharmacist who happens to be the sister of one of our friends. They ask us about the insulin. She explains with IV nutrition this can happen. They will work on reformulating the mix to have less sugars and this should decrease the need for the insulin. My husband mentions he is taking an antacid. She asks the name and sighs; “how do we get these doctors to stop prescribing this one.” It has an increased risk of some other problem. She tells me she will get the prescription changed to a better antacid. I feel lucky that I have this one connection. So, many people do not.
My friend the patient advocate texts me. He tells me he has texted the doctor – the surgeon and asked him to come in and spend some time with us. “Take care of my man for me.” The surgeon comes in and spends wow maybe 10 whole minutes with us. The most talking to us of any day in the hospital. He shows us x-rays that show the progression of the Ileus. He tells us a specialist will be coming in to see us.
We have family coming to the hospital in the late afternoon. My son has a baseball game and I am wiped out. I take the help. I won’t leave until I am sure there will be no more mistakes or attempts at mistakes. They call me and give me an update the specialist came by and said my husband can try a shot of Relistor. It is a drug that counteracts the affects of Opiods on the digestive tract.
Thursday evening, I text the friend of my tennis director, the GI doctor in Miami. I text him they are giving him an injection of something. He texts back “is it Relistor?” “ Yes” I text back. He says he can contact me later tonight by phone.
I am saying goodnight to my son when the phone rings. It’s the doc from Miami we talk for about 20 minutes. He is amazingly sharp, articulate and courteous and figures everything out just over the phone. He tells me based on the trauma my husband had internally, in his opinion, the digestive tract should start to wake up in 7-10 days from the second surgery. This gives me a sense of relief. I get a text message that my husband passed gas. Two solid farts. Hallelulah?
Friday I go back to the hospital. More family has arrived to help take care of my husband. I am emotionally drained and I have to let the reins go for a few days. My husband has a long road to recovery and I will need to help him. I can’t go down with illness myself.
Saturday things start moving and he is allowed to eat clear liquids. The GI gives him another Relistor shot. Things are moving Sunday morning we get ready to discharge. The nurse case manager tells me a home health aid will help teach me to dress the giant Excaliber gash down his stomach. Great, I am not too eager to get into that. Sunday morning, he is discharged and we come home after 15 nights in the hospital.
Wednesday after being discharged from the hospital I call the nurse case manager and leave a message, the home health service has not contacted me. I am still waiting for the callback from the nurse and the home health aid company. I was never contacted by the service.
I really question whether the medical and big pharma industry aren’t trying to kill us all. I have a developed a new fear. Going to the hospital.
You did an amazing job of getting him out of there alive.
This is an absolute horror story but also a testament of your love and dedication. It seems like you saved your husband's life.
Thank you for sharing this.