(I'm going to try and finish this "remembrance" by the time Gabe turns one. That gives me three weeks. This is such a long story - so much happened last year, but I think I can do it. I realize that the average blog post is supposed to be 600-700 words, but since I'm writing this all down for our family to remember, I don't want to leave out the important parts just for the sake of the average attention span. Jeff and I were *just* talking thru the events of this post a few moments ago, and were pretty surprised at how much we've forgotten about the sequence of events. There are some feelings, though, that I will never forget. This was a hard one.)
We were one week out from having Jeff's PICC line removed. He'd been on iv antibiotics for five weeks. Anyone who has dealt with that knows how frustrating it is. We'd wrap his arm in plastic, cover it in more plastic, tape it shut, and still water would soak the line dressing.
At first Jeff was very weak, we were unsure of how to get him in the shower since he was still healing from the hip surgery. I was always nervous - what if he fell? We got into a good pattern, however, and he was slowly regaining strength and color. He was able to walk outside occasionally as the weeks progressed, he was returning to decent health although he was still weak.
One night, I noticed that he felt hot. Shortly after, he started uncontrollably shaking again. Of course we were concerned. How could he be getting another infection, considering all of the daily antibiotics he was taking?
We called his case nurse. She assured me that it was nothing, that sometimes the body simply "got a little temperature in the evening." As it was getting quite late, I wanted to be sure for the night, and so I asked for clarification.
"What you are telling me is that there is really NO way he can get a second infection?"
"That's right," she replied.
"And so I really shouldn't worry."
"That's right. I've been a nurse working with PICC lines for over 20 years. Trust me. Your husband is NOT getting an infection."
"Okay. When SHOULD I worry? How high of a fever is too high?"
"He'll be okay as long as the fever stays below 104 degrees. If it gets into the 104, 105 range, you'll want to go in and have it checked out."
Well......we didn't really believe that, and Jeff's symptoms continued to increase. I was still scared stiff from the first staph infection, so I wasn't willing to wait around for his fever to climb.
We went to the Emergency room, told them what was going on. Jeff looked pretty good, walking with no cane, etc. He's a strong man in his early forties, joking around with the staff, etc., at least while ibuprofin kept his fever down.
A doctor came in to examine him and to ask him some questions. (We were at the same hospital he had been in a month prior.) The doctor was very confident - overly confident, I'd have to say.
"You don't have an infection of any kind."
"No. You CAN'T have. You have way too many antibiotics in your body."
"So an infection is IMPOSSIBLE?"
(We were really double checking here - Jeff's recent brush with death was still too fresh in our minds.)
"Trust me on this. Another infection is IMPOSSIBLE. You're fine. Just have a little fever. Nothing to worry about. And it can't be a PICC line infection, because we have NEVER had a PICC line infection here in our hospital."
But they took blood samples, anyway, "just to be sure and put your minds to rest...."
And we went home.
You know where this went, right?
The lab called within a few hours and told us to come right back to the hospital, because Jeff indeed had another staph infection and it was growing. They did not wait for the entire, normally required period to see what was growing - they could see that something was and that he needed to be readmitted.
So we packed up our bags and left the big kids in charge and went back to the ER. We ran into the doctor from the previous night who had assured us there could not possibly be an infection. He did some serious back-peddling. "Boy! When I saw you last night I knew there just wasn't something right. I went with my gut and ordered bloodwork done, and I'm sure glad I did that!"
We smiled wanly, remembering very clearly what we had been told. We waited several more hours, during which time Jeff continued to get more and more sick and I grew more and more panicked. Everything seemed to drag and just took so long. An hour to get a gown, an hour to get labs drawn, an hour to get labelled, tagged, etc., and during this time no evaluation and no meds were given.
Jeff started shaking uncontrollably. I began going out to the linen cart to get blankets for him. He'd cycle through sweating and shaking.
I stood in the doorway of our little room, hoping that my presence would make someone remember that we were here and that my husband needed to get to a room. He needed some attention.
The charge nurse, a tough looking guy, saw me in the doorway and sent a nurse my way. "Tell her to get back into her room. We can't have people out here gawking."
Honestly. I wasn't gawking. I was so exhausted at 3 a.m after the past month and with handling so much of everything at home and with the extra care, plus the stress of what was happening to my husband a second time. I wasn't "gawking," I was staring into space, vacantly. But I obediently took my offended little self back into our cubicle and wiped Jeff's sweat-drenched face and changed his soaked gown.
Still no doctor, still no medications, still no room. And now, he was missing even his PICC line meds.
Finally, around four-thirty a.m., Jeff was taken to a room. By this point, he was shaking so hard and breathing so rapidly that I thought his heart would explode. His fever was high and he began to vomit. At one point, he began to throw up and the charge nurse and his regular nurse were in the room. They did nothing. I leaped to the adjoining bathroom and grabbed the pink bucket where they stow a patient's toiletries. (Bear in mind that when I say "leaped" that I was six months expectant.) I threw the contents of the bucket into the sink, ran back to my husband, and held the bowl for him.
The nurses just stared at me.
This cycle continued for the rest of the night/early morning. I did not mind caring for my beloved - in a way, I wanted that to be my job. But I felt so alone! I wanted help, but did not receive any. Neither was there any communication given from the nursing staff to me. I ran between his bed and the bathroom, almost overcome with panic. Eight kids at home. In a hospital, but receiving no real care. I kept a cool cloth on his head, kept changing his gown as he soaked it, kept replacing his blankets as he soaked them. I hunted down his nurse and asked for a warm blanket to help with his extreme shaking. I was told that they did not have a blanket warmer on that floor, and that it was against policy to use the microwave to warm a blanket for him.
I watched his chest rise and fall and waited for him to have a heart attack.
Would they come and help then?
It was so awful.
I finally left the room and went to the main desk on the floor and asked for the head nurse. I asked her for at least a warm blanket.
She replied that "she would see what she could do, but they were running low on blankets." And the implication was that I had been using too many blankets.
I could not believe my ears. A man came near death, has his second staph infection in a month's time, you've given him no care, and you're going to fuss at the wife because she has used too many blankets?
A limit was reached in that moment.
I knew we were not being treated right, and something rose up within me. Perhaps it was justice, I still haven't put my finger on it.
I said, "Then you will need to go to another floor and get some more blankets. I do not care if it is against hospital policy. Go to the laundry and get more blankets. And while you are at it, please let the doctor know that we are here and that my husband has not received any medication."
Within a short while the doctor arrived and examined Jeff and read his charts and ordered a new kind of medication. The head nurse hovered near, filling the doctor in on all of the care she had been giving Jeff. It was dawn, it had been such a long night. I was ill myself with worry and the trauma of seeing him so ill, again. Once the doctor left the nurse spoke with me, never apologizing but saying that she understood why I was so upset, seeing that I was pregnant and over-emotional and all.
I took it. I didn't really know how to respond. I was beyond spent, and I was just glad that Jeff was finally getting help. As soon as I could, I would request that Jeff be seen by our regular family doctor and his surgeon. They had handled his original illness very, very well, and they would interpret the lab results for us. Our concern was that the staph illness had settled in his hip joint again, and that he would maybe lose the hip or worse. And if the staph infection was the same kind, and had overcome the antibiotic beads placed in his hip joint and in his PICC line - what would we do? What could be done? Were we facing death again?