Aug 28 - Hurly ICU

I visited Mom today. She was going in and out of ICU psychosis again. Once we started into a conversation, she kind of snapped out of it but once in a while she'd drift off into a parallel universe.

She had no temp, was still on the vent with low oxygen but the vent was still doing all the work. That' all I could find out.

Yet again, Mom's nurse had never had her before and couldn't give me a current status update. There has been once since Mom has been in Hurley that I've seen a nurse that has had her more than once! Hurley must outsource all of their nurses from agencies! Again, I will complain, that I am extremely uninformed about her medical condition. I'm sure that the staff update Mom and Dad on a regular basis but that helps me none. You all probably know that Dad is horrible at remembering anything like this and Mom can barely talk and is going in and out of ICU psychosis. If anyone else in the family has gotten an update while they are visiting her in the hospital, I don't know about it.

I asked Mom and Dad about transferring her to Henry Ford. Yesterday, Dad agreed with me. Today he explained that the "Guys from the Lodge" said that Hurley is a great hospital so now he is against transferring her! Damn those men! (For once, I'd like to carry more weight than a bunch of retired beer drinking men -- just once.) Mom doesn't want to transfer because she'll be worried about Dad. She is enjoying his company for hours on end every day. Too bad, I'd rather her be alive.

Her case manager stopped in to say hi. She couldn't give me any infor either. She did manage to scoff at me about transferring Mom to Hurley.

Still worried about Dad and winter. He shouldn't be driving much less in the dark or on roads that are anything other than dry. If anyone has an idea about what I can do with him, please let me know. Short of having him live with me, I'm lost. He won't live with me.

I think about how stressed I am and how sorry I am that I can't see Mom more than the 4 days a week I see her. Then I think how selfish I am because at least I'm not the one laying in that bed with one machine breathing for me and another one feeding me. It's hard.

Aug 27 - Hurley ICU

I just returned from a family trip to the western edge of Wisconsin to visit my husband's extended family. All-in-all, we spent about 28 hours travelling between last Thursday and today, Monday. You should have seen how happy Carter, our 10 month old, was to be sat in the living room floor -- he was amazed that it still existed!

I will visit Mom tomorrow morning for the first time since last Wednesday. I hear that she's on an upswing. I am taking the vacation to CO that was scheduled for the 4th of July but that I rescheduled because that was at Mom's low point. I wasn't sure if she'd make it while I was away so I rescheduled.

While I was away this weekend, Hurley called and asked my permission to give Mom a heart catheter - I still don't know why. First of all, when they left a message, they didn't explain why she needed it and second of all, she didn't need one. History: Dad was thinking on his feet and asked that his heart doc give a second opinion. Dad's doc said that you should never do this procedure when someone has pneumonia like Mom and that she doesn't need one anyway!

That's it, I'm moving her back to Henry Ford. It will be extremely inconvenient for everyone and I apologize for that . I just don't like Hurley. Do you know that I've left over a dozen messages for docs or nurses to call me back and I have not received one call? NEVER! Yet, they find the time to call me 3 times in a 12 hour period to hassle me to give my permission to give Mom a procedure that she doesn't need.

My rant: I am frustrated because Mom and Dad both want me to help make medical decisions for her -- something for which I am very proud. The problem is that I am an extremely uniformed person. Typically, I show up earlier than normal visiting hours because of my work schedule but the nurses have usually just switched shifts. More often than not, Mom has a nurse that has never been with her before (how many nurses does Hurley have, anyway? You'd think that I'd start doubling up with a nurse that has actually been with her before.) So, they can't tell me 1. what's wrong with her or 2. if she's better or worse.

Another thing that gripes me is the fact that no one considers her history. I understand that they have to closely monitor the hear and now but if they would just see how fragile she is, they wouldn't push her so hard to get off the vent.

Aug 21 - ICU

My family and I are going to WI near the MN border early on Thursday and will return Monday evening. If you are inclined to visit Mom, please make an extra trip to visit her while I'm gone. I have been visiting her 4-5 days a week and feel guilty about not being there while we're gone.

Mom continues to be on the vent but she hasn't had a temp in the last 24 hours that I was able to learn about. They were talking about weaning her off the vent again but this time much slower. The orders hadn't come through from the docs when I was there this morning at 8 am.

Yesterday, Dad told me that they found an infection in her urine though the am nurse this morning couldn't confirm that since she hadn't looked at Mom's chart yet. She hasn't been on antibiotics for the last 36 hours that I know of. She has been itchy so they give her Benedryl. She scratches so much and so hard that she's drawing blood. Basically, her pic line isn't being unused. The Infectious Disease doc mentioned that she had bacteria in her sputum.

Last night, Mom pulled out her feeding tube and appeared to be trying to extract her pic line. I'm not surprised because she kept pulling at all the wires while I visited her yesterday and kept holding her arms in funny positions. She was uncomfortable and antsy. Mom and I have been talking about her getting a temporary feeding tube through her side and get that tube out of her nose. She's on board with that notion. I told the nurse today. We'll see if anything happens.

Mom seems to be slipping into "ICU psychosis" again. She "can't" hear although that is very sporadic. In the past, her hallucinations were proceeded by so-called hearing difficulties. It's hard to tell when she can hear and can't because she's so agreeable she'll not her head along with you whether she can hear you or not. Hard of hearing seems to be Mom's ICU psychosis M.O.

Mom was happy to show off her newly polished toes and filed finger nails thanks to Aunt Susie.

I liked Mom's nurse today and last night -- I feel like this is a record for her having a pleasant nurse two shifts in a row. I consistently like the Respiratory Techs too. I am a bit dissatisfied with some of the nurses and all of the docs. Lovely, right? The resident in charge of Mom's case is unpleasant. She continues to talk down to me and interrupts me when I talk to her. The longer Mom is in Hurley, the less impressed I become. Have you noticed the scraps of garbage in the elevators? In Mom's room?

I haven't gotten a decent, informed update in a while. I will call tomorrow morning to get one. I'm too tired this evening.

Aug 18

The longer that Mom is in the hospital, the harder it is for me to sit down and update the Blog. My apologizes.

Mom still has a temp that has ranged from 99-102 for a couple weeks now so she still has an infection that isn't being treated by the antibiotics. Her potassium, magnesium, sodium were better this week so they decided to start taking her off the vent for as long as she could tolerate it. They gave her some extra magnesium (or was that potassium?) yesterday but her level wasn't crazy. Vent times: Mon 5 hours, Tues 10 hours, Wed 12 hours, Thurs 24 hours then her body tired out so much that she won't be off the vent again for at least a couple days. (I didn't ask why they let her get to that level of exhaustion. It had to either be an over site or they want her to build up her lungs that much more.) She spiked a temp of just over 102 f while she was laboring to breathe. Hurly put her on the antibiotic Venco Myasin (sp?) which is fine by me because that seemed to be the drug that helped her the most at HF. I had mentioned this fact to the nurses a while ago but I'm pretty sure that they didn't pass it along to the docs.

I continue to be amazed at how hard it is for me to get information out of the people at Hurly. One particular nurse has taken it upon herself to fight me every step of the way so I've made arrangements for her not to be Mom's nurse anymore. I suppose that they resist me because I'm not there every day like I was when Mom was in McLaren. Although there is a hole in that theory because Henry Ford really reached out to me with information. If I could get Dad to make the call to his attorney to change their powers of attorney, my life would be minutely easier.

Aug 12

Mom is doing better. In summary, she has all the same problems she had before she was put into rehab but not nearly as seriously. She still has a temp with a touch of pneumonia and pancreatitis. She's on antibiotics. She's still on the vent though Hurley is slowly weaning her and she's taking well to it. She continues to be tube fed because of the vent. Her potassium keeps showing as low so they switched her nutrition to a different brand that has helped to keep her potassium level better but it is still prone to being low along with her magnesium. Her hemoglobin dips a bit. They have given her blood a couple times this week to fix the low levels just mentioned. Again she has loose stools. Her kidney levels aren't great either so she's being monitored by the kidney docs.

It's amazing how everything is tied together. For example,
Not eating in rehab --> dehydration --> IV nutrients --> too many fluids on board --> fluid on lungs --> difficulty breathing --> ICU --> vent --> tube feeding --> loose stools --> low potasium --> blood transfusions.

It would have been nice if the Rehab would have been monitoring her food intake.

Mom is on board with getting herself better. She is mentally stable and ready to work. She says she's ready to eat. When I told her that Dad had a big, fresh tomato on his kitchen counter and suggested that he make a juicy BLT, out of the blue she cried. She wants a BLT... she wants out of there. She's been in the hospital since the day after Memorial Day, remember.

Amazingly enough, she seems to have more control over her legs now than when she was in rehab. Again, I think that Henry Ford pushed her into the intensive rehab to quick and that rehab didn't take good enough care of her in her not-so-perfect medical condition. Hind sight is 20/20.

I bought Dad a month's supply of weekly pill boxes and I finally wised up and have my parents' mail forwarded to my house so that I can pay their bills at my leisure instead of trying to cram it in on the weekends. These two items will allow me more time with Mom on the weekends. Aunt Susie is looking into professional help for Dad from local agencies. It would be great to have someone stop by every day, make sure he's taking his meds, check his vitals, make sure he is eating, make sure he hasn't fallen and can't get up, etc. It's just too hard for the family to keep doing this stuff for him -- all of us but Aunt Susie work full time and have kids at home. His friends are checking in on him more often now and taking him some yummy food. (Jan, great beef stew! I stole a bite.)

Sorry I haven't updated the Blog in a while. It's been a crazy couple weeks for me.

Aug 7

Medically, Mom's condition hasn't changed much. Cognitively, Mom is much better. She wasn't paranoid or afraid tonight when I visited her. In fact, she declared that she wanted to eat. (It's too bad it took her regression as a result of her not eating to make her want to eat.) She seemed to be in good spirits considering that they have her in there with her hands tied -- they're still afraid that they'll take the tube out of her nose but I think that she's past that now.

I told her that I asked the doctors to transfer her to UofM and she said "good" without hesitation. Dad agreed, too. I hope that I'll be able to get Dad to stay with me at least now and again IF Mom gets transferred to U of M. Dave could take him to Ann Arbor when he goes to work and we could keep an eye on him.

I've asked the Docs at Hurley to call me four times and they never have returned my calls. Today, the Case Manager didn't return my call either. I've been told by more than one nurse that it's almost unheard of for a doctor in Hurley ICU to call a patient's advocate. This is absurd. This is the first time that this has come up. The docs at McLaren, HF ICU, HF general, and Hurley Rehab all called to keep me posted. All the more reason to get her out of Hurley. Hurley already starved her. Am I the only decision maker that works full time? The nurse tonight told me that I should come up and wait for the docs to do rounds. "When?" I asked. "Between 8 and 4," she said. Yeah, right.

Kim will visit her tomorrow evening and Aunt Susie will visit her on Thursday. Dad visits her often.

The Women of the Moose will start taking Dad food on a weekly basis. Martha and Carl W will start dropping in to check on Dad. I will ask Mr Ballard as well as neighbor Art to do the same. Anyone else want to decide what to do with Dad? I really would rather not as you can imagine.

Autg 5 at 1 pm

We're back to where we started. I'm not sure if this bought is a result of everything Mom's been through or if she never shook what that was to begin with. For sure, her determination to not eat has attributed to this.

I will visit Mom later when Dave gets back to watch Carter. The following is the report I received from the doctor this morning. Mom had too much fluid on board so the medical staff asked to remove fluid from her right lung via needle in the back. Since she was struggling for breath, of course we agreed. She is back on the vent and has another tube up her nose so that they can administer the proper meds and tube feed her directly to her tummy. She had a low grade temp last night. They are running all the standard cultures -- I've lost count of how many she's had taken by now. She is continuously monitored now that she's back in critical care. Her kidney levels are a little high but not dangerous (creatin about 2.something). I can only imagine how all of this is impacting her delirium -- she must be scared.

Now I'm starting to worry about Dad. I had hoped all along that Mom would get better much faster than this so that she can take care of him. I'm going to start getting nosey and see if his friends believe that he is capable of taking care of himself in the long run because I do not. He's putting down the whiskey pretty well on a regular basis. This coupled with the fact that his left half of his body is weakening, he's losing his balance, and he blacks out from multiple strokes, he had high blood pressure, corroded arteries, and inoperable blockages... yeah, might be time to face this uncomfortable situation. I might need to force him to live with me or someone that can keep an even closer eye on him or look to an agency to help watch over him. I'm also starting to realize that they probably won't be able to go to Florida. Dad driving on winter roads is a scary thought. I know it's only August but I feel like these plans need to start being considered now before it gets upon us. You know how time flies.

Aug 5 at 1 am

Hurley woke Dad up at 1 am this morning to tell him that they transferred Mom to room 409. This is a 1 nurse to 1 patient area that focuses on heart patients but also accepts ICU patients which is the case for Mom. Her O2 lowered to 78 and didn't rebound as fast as they liked so they moved her from rehab. She also has a temp of around 99. They are running cultures to try to figure out why she has a temp. I told the nurse good luck, maybe Hurley could figure out something that the last two hospitals could not. The real reason why she was moved is so that she could be properly monitored.

The great news is that she ate a pint of chicken and dumpling soup with all of her veggies at dinner last night along with a complete can of Boost. While I was there in the morning, she drank a Boost and ate a banana and drank her O. She had drank 2 Boosts under the watch of the previous 3rd shift. I think that she's started to internalize what we've been telling her (docs, nurses, and family). Eat or get the feeding tube on Monday.

Dad was drinking last night. This coupled with his extremely poor circulation led to him falling when he answered the nurse's call at 1 am. Instead of answering the call with the phone by the bedside, he jumped up to get the phone. Well, in his poor physical condition, you don't just jump up. He told me that he fell and got a rug burn on his cheek. The Nurse Manager of the rehab that Mom just left mentioned Dad's dementia. This is the first time anyone has used that word in association to Dad with me. While it was somewhat shocking, it was also a relief. At least I'm not crazy -- he is slipping. Mom's new nurse just told me that I could use this to get legal authority over Mom if need be... after getting the dementia documented, of course. Hurley won't sign off on Mom having enough whits about her to let her sign authority over to me and Dad has told me on more than one occasion that he doesn't want it. He doesn't even know how to pay their bills or to take his meds properly without assistance. The new nurse told me that I have legal authority unless I have siblings that I would then need to conference with but since my only sibling is a Navy Seal and in Iraq right now (Mom doesn't know this) then I'm it. If Dad didn't have dementia, I'd have to go to Probate Court to get legal authority. This is something I didn't think I'd learn at 2 am on a Sunday morning! I'll need to check to see if what the nurse told me is right.

I will visit Mom after Dave gets back from visiting his brother this evening. I assume Dad is visiting Mom today too. I don't know if anyone else plans to visit her or not. If you visit Mom, please see my friend's comments in the below email.

Kaylee
810-625-8481

Kate Braciszewski wrote:
Hi! just read the blog from yesterday. the psychosis part confuses me a bit.

Is she oriented? know where she is? date? Be sure people are reminding her where she is. Maybe write it down for her if she has the ability to read. Put a log book in her room if she can read. Have everyone jot a note for her--make it simple...."Hi Mom, it's Kaylee and I was here today for 2 hours. Today is Saturday, August 4-it is still very hot outside. I will be back Monday--2 days from now". If this is "doable" ask the nurses to read the entries to her. You could have an explanation on the front of the book for people to read so they know what to write.

Is she sleeping at night? If not, and the lights are on 24 hours a day, that could account for her confusion too.

Nutrition is key. Ensure? Milkshakes? Yogurt?

Aug 3

Let me begin by saying that I was misinformed about any brain injury as a result of the lack of O2 . This misinformation I cannot control and I do apologize for scaring you. However, her extreme confusion, her inability to understand basic commands or to write her name, etc etc was real.

Real scary.

Mom is delusional and entering psychosis. This is common in people that have come close to death, had so many major organ failures, and who are not getting the right nutrition. At this point, her biggest problem is malnutrition. Mom really has never eaten properly since she pulled out of her last bought of being septic in HF. She had to have a blood transfusion yesterday because her potassium and B12 levels were very low; she was also anemic. She is starting to confuse dreams with reality and she doesn't trust the medical staff. When you question her about what they have done wrong, she gets confused and can't really answer the question. All she knows is that we need to call the police about "it". Also, Dad is the bad guy all of a sudden without reason. Aren't we all most likely to take out a bad day on our spouse before anyone else?

Mom is uncomfortable being by herself in the hospital. It is time for everyone to start trying to visit her as much as possible. Her friends Martha and Carol popped in the other day. Aunt Lisa was there and mentioned that Mom was really putting up a good front for her buddies. Daily visits by friends would wear her out but I think occasional visits will do her wonders. Her psychosis seemed to temper after I was there a couple hours. She kept asking, "Where is your Dad?" He's still her favorite ;)

Mom will be given a feeding tube inserted in her side early next week unless she does a 180 on her eating habits. The docs suggested I start prepping her for this now. I thought she'd be upset about it but her response was, "Ok, good." She just really doesn't want to eat. I believe that she understands that she won't get better unless she gets nutrition. Although, she then drank a can of Boost in about 1.5 hours without much encouragement.

She continues to have pneumonia and the thick secretions that accompany it. Hurley is now monitoring her oxygen continuously. They took away the trach piece that makes it easier for her to talk because of the thickness of the secretions. She is getting really skilled at covering the trach with her finger so that she can talk.

Aug 2

The Neurologist on Mom's case called me today. He seems to be the only doctor interested in reaching out to us from Hurley so far. Some tests came back that showed her potassium levels are very low and that she is anemic (sp?). B12 is very low too. They will give her a transfusion to boost her along. We've been struggling to get her to eat and now we see the results of our failure to actually get her to eat. The doc thinks that between her "metabolic disturbance", the latest antibiotic for her not-ever-healed pneumonia, and all the major organ failures that she's endured over the last couple months is causing her to become delusional. He was also struck after reading her chart that we are lucky she is alive after all she's been through.

Regarding her mental state, she has improved considerably since Tuesday; although, she is not herself by any means mentally. He thinks that she will continue to improve. The family meeting that was supposed to happen today was postponed by the other docs until tomorrow because they couldn't attend today.

A family member told me that he said she had lack of oxygen to her brain may have been a miscommunication. Or, the hospital is covering itself from a law suit. Who knows?

Even if she continues to improve I am unhappy with the way that the nurses are letting her secretions build up to become mucus plugs. Family has witnessed this a couple times. Since we're there only a fraction of the time, what's happening when we're not there to raise our hands and ask for help on her behalf?

She's been in Hurley for 1.5 weeks so far. This is supposed to be a 3 week program. There is no way that she'll be ready to stand, let alone walk, on her own in that amount of time. Besides questioning the medical staff about if she's in the right department right now, we'll have to ask what the next steps are.

Aug 1

Something has gone horribly wrong. The Neurologist tested Mom yesterday and confirmed that somehow she managed to be deprived of O2 to the brain. She is acting like she's had a stroke but she probably has not. I know what it is but Hurley may not admit it. She has gotten more than a handful of secretion blockages in her trach that caused her O2 level to go down significantly while family was there to do something about it. Since she was doing great Monday am not not on Tuesday am, sometime in that 24 hour block they probably let her lie there and practically suffocate. This is bad. bad bad bad

For example, if you ask her to draw a circle, she doesn't understand what you're asking her. She just looks at you like she's waiting for you to ask her something. She can hear, she just can't process. It's too early to know if this is temporary or not. This is bad. bad bad bad