Saturday, March 28, 2009

Now I am Angry

We had an absolutely awful night last night.

Master had a serious coughing fit that lasted well over an hour starting at about 1:15 AM, and in spite of our repeated requests for something to help manage the ferocity of the cough, or at the very least, some way to reduce the pain He experienced because of it, we were met with indifference, hostility, and a general attitude of condescension. When I finally got stomping angry over it all, the night nurse gave in and called the resident to come look at the situation. He insisted that they wanted Master to keep coughing; that coughing is an important part of getting well; and he was simply unwilling to give Him anything to quiet the spasms. When I got my back up and told the arrogant jerk that this was NOT simply coughing; it was violent and wrenching and was leaving Him gasping unable to catch His breath. The best that the "medical professional" could offer -- IV morphine for the pain. There was just one problem with that BRILLIANT idea... Master's IV port had stopped functioning at around midnight, and no one in this supposedly "excellent" hospital was able to get a new IV started, even though four so-called "experts" tried. Some of those efforts were just brutal. They finally gave up on the whole business, and the coughing calmed on its own. At about 3:30 this morning, He and I finally fell into an exhausted sleep. We were not awakened by the usual parade of residents until 6 AM.

They did finally find someone who could efficiently and effectively re-establish His IV port this morning, and so as of now, He is once again being given IV fluids and antibiotics. He's also been given the go-ahead to restart clear liquids, so He's been given some apple juice and some sugar-free jell-o and a little warm tea. He did regurgitate a bit of that, but so far most of it seems to be staying down.

This morning, He has experienced repeated bouts of diarrhea, and there is some thought that perhaps He has now a C-diff infection. We are waiting to be able to get a stool sample that can be cultured. T is at home, and doing well, but understandably worried and wanting to be able to see Him. I may go home and get her later in the day and bring her down for a visit, but I am reluctant to do that until we know what we have going on here. She is doing so well. We do not need to expose her to some nasty bug and send her into a tail spin.

Mostly I am angry -- beyond angry, I am furious. The very excellent care that both Master and T received in the days immediately following the surgery has devolved to a style of medical practice that is seeming resentful, parsimonious, and just at the verge of neglectful. I am very aware, this morning that, had I decided not to spend the night here last night, He'd have been all alone in the face of the coughing and the horrible IV debacle; and no one would have cared. I find that just outrageous.

I am exhausted, but I am more than determined than ever that, one way or another, we will get the care that is needed here, and He will get better, and I WILL take Him home.



jojo said...

You go, girl. Even the best doctors will tell you that it is important to have an advocate with you in the hospital. Keep demanding care until things feel right to you. Stay level-headed and cool - but do not let up!

Amber said...

Sorry to hear things have been so complicated. I had Dan read it all, and all the meds Tom was taking for his medical issues before the surgery and basically he said the doctors are doing the right thing, sometimes people with Tom's weight and diabetes, etc., fluid backs up into the lungs after surgery and that's why they want him coughing, although he doesn't understand why they didn't do an IO if they couldn't get an IV going but maybe with the other complications they didn't want to risk that. (Sorry if any med profs read this and I said something incorrectly, I'm paraphrasing from what he said; his language was much more technical.)

The infection, as you also probably know, is due to the "good" bacteria in the colon being temporarily knocked out by the antibiotics.

At this point, they are just waiting for his body to recover and get better; it's going to take a little time.

I know it's upsetting; my Cory went through a lot when she was in the hospital for a week and some of the staff was great and some wasn't. She had to wait to get better too and it wasn't pleasant. She was very sick but she got better and came home and is fine now.

Try to get Tom home soon; I know everyone wants that, including the staff, best place for him is at home and I hope he gets to come home today or tomorrow at the latest. Keep making noise and keep being mad and insist on controlling his pain.

All my best to you.

Hugs for Tom, Swan and Teresa.

selkie said...

Having spent time in hospitals with ill people myself, my experience is very much the same.

Perhaps indeed it is as Amber said - but would it KILL them to actually take a few minutes and EXPLAIN it to you and Tom properly? I think where it sticks is the paternalistic, dismissive attitutde that seems far too prevalent in the medical system - everywhere.

Treating patients and famalies as if they are brain-dead.

If he has to suffer this, if it is a "normal" part of his recovery, then I think you and he both could tolerate it far more if you KNEW WHY?

Unfortunately, you're right. If you had NOT been there then it would have been far worse for him. I learned through my expeiences a family member MUST be there as an advocate. Thank god for you.

I hope things look up, I really do and know tey will, but this is TOUGH.

Impish1 said...

So sorry- spent this entire week fighting the health care system for a loved one culminating in an entire day of running all over yesterday with them when the powers that be realized that they screwed up and tried to fix it FAST.
Most hospitals have a patient advocacy office if you feel you need it, and one of the big items checked for their accreditation is how well they meet patient's needs for pain control. I wouldn't hesitate to address your concern that " a teaching hospital is unable to get an IV started or address pain control at night". Hang in there as best you can, use your teacher voice; it will keep them from writing you off the way they'd like.

Anonymous said...

I found out long time ago, you gotta be very well to stay in hospital. Not sick! Doesn't make any sense, but it does feel like it. So sorry you have to fight this way, it shouldn't be necessary.
I'm angry with you!