The past 2 days he had significant progress because he kept liquids down all day yesterday and today at lunch and dinner ate solids- so far so good. He was hungry and ate quite a bit. He has discomfort inside abdomen from things starting to move around and try to work again. The incision hurts when he moves a lot but he's not in any major pain. He had hiccups for many hours yesterday and today which makes his stomach hurt. He is very very tired all the time and gets frustrated which is totally understandable especially when things move at a snail's pace at the hospital.
Mrs. Claus has given me comfort by telling me that it is common that dialysis patients can have the anesthesia stay in their system for very long time. On top of that there was the morphine. Which explains why it seems like he's still on it and he has not had much pain. It is still lingering but has gotten much better.
He had dialysis yesterday in the hospital center instead of his room like they did in ICU and he gets it again tomorrow morning. Hopefully he is home by Monday and will be going to the hemodialysis center run by Dr. Russo on Mon, Wed, and Fri for 4 hours a day. He cannot move around without assistance at this time. He is very unsteady and can get lightheaded easily. I don't see how he could get around our house without help and I am not trained on that so I am scared of him coming home too soon before he is able to move on his own.
A case worker came and said he was being possibly discharged tomorrow. She also said that he was going home with IV antibiotics!!?! I had to question that 3 times before she looked it up and said- oh maybe not, is he going to a dialysis center? Doesn't give you much confidence in this place when they are reading charts wrong several times now. I can see the confusion if he was even on any IV antibiotics but he's not. And he NOT going home tomorrow. My best guess would be Sunday.
Today his daytime nurse who gets there at 7 only popped in to say hi to him, then I got there at 8 something and he was not there. She came in to tell me he went to get an ultrasound which concerned me so I asked why he was getting one? (don't know) who ordered it? (don't know) so I just let it go. We talked about how important it was for him to get up and walk and I told her that yesterday only one person came in morning to do it, then nothing the rest of the day. His dad had to get up him and walk him 2 times last night. So she said they would make sure he got up today. Then she disappeared and did not come back. The ultrasound turned out to be just x-rays.
I started asking for her at 11:15 and by 12:15 still hadn't seen her. This is her patient and she had not even taken his vitals or checked his chart and it was 12:15. That's when case worker came in so I asked her who we need to talk to about concerns that things were not happening. She asked so I told her everything that was not being done that the doctors have ordered, then we started to see some results. The CNA came in several times and helped Bruce get in bathroom to take bath, she changed sheets and got him some things he needed. The case worker got his lunch tray changed from liquids to solids because it was after 12 and the nurse hadn't done it yet even though the surgeon at 9am said he could have solids for lunch and he needed to get up and walk! The CNA helped him up but left it up to me to walk with him which I do not feel comfortable with when hes wobbling all over the place. The surgeon said IV fluids to be stopped- also at 9am and it was probably 1:30 before it happened (and I had to ask her about it 3 times). The stupid machine was beeping non-stop but the nurse just came in looked at IV site and left it to beep. After 10 minutes of it I couldn't take it anymore so I went to the desk and asked for our nurse once again. The head nurse came in and took care of it all finally and was very nice about it.
Nurse finally took vitals and she told me they gave him an oral pill this morning of a blood pressure med I had not heard of before and I asked why not Coreg (his normal one) especially since his blood pressure was still 158/97. I told nephrologist that and he couldn't believe he wasn't taking the Coreg. Nephrologist also said he would look at his chart and order him back on some meds he was previously taking before surgery- this was about 1pm. Nurse came back to explain that he really didn't take a pill, it was in IV form and the way they wrote it on chart was confusing. The GI doctor ordered Miralax and Prilosec about 2pm. Nurse came in around 5:30, mom asked about meds and said she would go get it. It was after 7pm before he got ANY medicine.
This kind of thing happened all day long! I really have no idea how things can be ordered my the doctors and not be carried out unless I ask about it over and over. No one came to get him up walking of course! The first day the CNA was awesome, she was in there 3 times getting him up to walk and maybe 10 more times doing other things and a bath. Yesterday was pretty much nothing except one walk and today was a total battle to get what little we did. I just think what in the heck would happen if I or his parents weren't there? There would be no walks, no movement, wrong medicines, wrong discharge plans, wrong food, and on and on.... This is just plain disgusting. Especially since this happened last time he was there 2 months ago.
I know lots of boring details but the hospital sent out a survey last time and it's long so I never had time to fill it all out and write explanations. This time, I will have it in my blog to copy from!
Oh and I got asked to leave the room by an IV woman who said husband's do better without their wives in the room. I was speechless.
I will give Bruce his cell phone back tomorrow but I don't think he will be calling anyone quite yet. If you want to visit him, feel free. He was cheered up by visitors from work today even though he is still a little up and down.
Since by Man Came Death - A Podcast Text
2 years ago
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It so saddens me to have what you have posted validate all the concerns I have with nursing and the practice of medicine today. This is not how it is supposed to be nor is it how it was when I was active in nursing. This is just intolerable yet we feel we are powerless in these situations. You are doing what you have to which is to constantly monitor what is ordered versus what is being done and continuing to speak up until Bruce gets what he needs. I question often whether any one of the many different doctors who seem to be involved in any one patients care really is aware of what all everyone else is ordering for the patient. Never assume that any one of the doctors knows what meds Bruce is actually on. This applies to visits to his dr after he is discharged. We all assume the dr knows each patient and the history and the allergies and the current meds. This is rarely the case in my experience. I make sure to go over every med I take on each visit, as well as refreshing the drs memory as to what special issues and problems we have been dealing with. They get one patient confused with another and often do not remember special details regarding you or your case. The xrays Bruce had were most likely flat-plates of the abdomen to see if there is any distention in the bowel, signs of motility, etc. to see if the ileus is resolving. The hiccups occur as a result of irritation of the phrenic nerve under the diaphragm from all the surgery. Mrs. Claus is quite correct, as I mentioned before when the kidneys are not there to eliminate toxins then there is prolonged retention of everything including morphine and the anesthesia drugs. No way to eliminate them through the usual route via excretion by the kidneys. Dialysis will help. If Bruce is unsteady on his feet, would he feel safer with a walker for awhile? They can be rented temporarily (medicare covers this). Some have a canvas "seat" stretched across the middle so if the pt gets dizzy they can actually sit down on it for a minute. If you are overwhelmed with the care Bruce may need initially, the Dr can order home health nurses and aide to come in for a period of time to help you transition. Also can order any special equipment you might need even temporarily. Ask your case worker about any local groups (like FISH) that provide transportation to and from dialysis, at least for awhile. I am sorry to say that in this world, Amy, you will find you have to educate yourself as much as possible in order to advocate for Bruce. You are really doing a great job just recognizing the deficiencies in his care and doing something about it.
ReplyDeleteGood lord. That is appalling! I'm glad you are all there to keep on top of things.
ReplyDeleteGlad to to see you getting some expert advise with this. That is great! Hang in there. I am always the witch that goes and gets the nurse when Sean's in the hospital too. I don't ever expect that to change.
ReplyDeleteMy thought in all of this is why can't the just do their job correctly? Those have been the issues that stress me the most-the screw ups of someone dropping the ball. It's their job!!!
I don't know if I told you, but I started a blog last month. I don't know if you want to post it to yours or not, but here is the link:
ReplyDeletehttp://hoefling-livingwithpkd.blogspot.com/