Dec 4 - Driving!

Sorry for not updating the blog for so long, that's because Mom is doing so well! In fact, she's driving now!

Oct 22 - Still home!

Mom would have come home earlier but she contracted C-Diff (sp?) in the hospital. She bullied the doctor into sending her home because the symptoms had mitigated. The problem is that C-Diff has resurfaced (or probably never went away, the symptoms were just masked from the meds). I'm not sure what to do about her because there is no way that she wants to go back to the hospital but I'm afraid if we let her stay home that she won't just go back to the hospital, she may end up in ICU again. She also developed a urinary track infection. She has drugs for both conditions along with something for nausea. She hasn't been eating for a few days because she can't keep anything down.

I hear imaginary sirens going off.

The problem is that Mom doesn't pay attention to her symptoms very well and if the nurse who visits her twice a week doesn't specifically ask about something that is wrong, the nurse may not get the whole story. Dad is no help in this regard, either. The nurse accidentally discovered Mom was urinating all the time which led to the discovery of the urinary track infection, thank God! She would have ended up back in ICU for sure if that went unchecked.

I feel like my parents think that Mom's out of the woods just because she's sick at home and not in the hospital. I'm to the point of being a complete nag but it doesn't seem to be doing any good. Luckily, my cousin, Kim, who lives near them is an RN and checks my Mom on a regular basis. Kim works for the same company who sends Mom's home care nurse so Kim is working behind the scenes to keep Mom as safe as possible.

The problem with going back to the hospital besides the obvious -- Mom doesn't want to go back -- is that you get sick when you're in the hospital. That's how she got C-Diff and all the other bugs (MERCER, pneumonia, and more).

Oct 8 - HOME!

Mom was released from Select hospital today to go home! She was supposed to go home last Friday but she managed to pick up a hospital acquired flu like cold that made her a little weak. The doc wasn't all too keen on Mom going home today but she put her foot down. She was ready to go home!

Dave, my husband, and I helped her get home. She's doing well. She can maneuver from room to room without incident. They have a walk in shower with a built-in seat so she's all set.

I checked in with her later in the day. She was exhausted. What she accomplished in an 8x8' room in the hospital, she is now accomplishing in a large ranch house so she's having to walk a lot more than in the hospital. As long as she doesn't push herself too hard, I think it's great that she's having to work a little harder... we just need to make sure that Dad doesn't try to help her too much so that he gets worn out, too.

The family will be taking meals to her. A few people have suggested Meals on Wheels. I know that Mom would make sure that I had meals so until it gets too hard to take her meals, we'll skip Meals on Wheels. But, never say never.

So, let's pray and cross our fingers that she continues to move towards full recovery. What we don't want is for her to wind up back in the hospital. And, if she does, this time I'll probably take her to Ann Arbor UM Hospital ER. We might as well get her in the best hospital and skip the Flint hospitals -- we were all far from happy with them. Although, I have to say, Select was a great "sub-hospital". The problem is that I believe you need a referral from another hospital to be admitted there -- I could be wrong on that point.

Cheers!

Sept 20 - Select

They're talking about removing the vent from Mom's room! She walked down the hall with a walker! Things are definitely moving in the right direction. Not to be a pessimist but let's not get our hopes up too high based on the fact that history repeats itself. Pray that there are no more back steps in her recovery this time.

I continue to be impressed with the quality of care and staff at Select, a hospital within a hospital, located within Hurley Hospital.

I can't help but wonder what the next step will be in her recovery process.

Sept 17 - Select

A lot has happened since I was preparing to go on vacation last week. When I left, Hurley was asking me what I wanted to do with Mom since she was having trouble getting off the vent: send her home for Dad to take care of her or put her in a home. She had just stopped having temps and they were again questioning the strength of her heart.

Well, I was pleasantly surprised when I returned. Mom had a heart catheter (a scope, really) that showed that her heart is strong with minor artery blockages -- nothing for concern. She was moved to Select, a hospital within a hospital. She's now in room 1170. Select has a slower paced rehab center and specializes in working with patients on or just off of the vent.

Select seems to me to be far superior to Hurley. The staff is much more attentive, professional, and caring. So far, communication is much, much better, too!

They changed her trech yesterday to a smaller one with a valve on it so she can again talk! They were talking about testing her swallow reflexes today to see if she'd be able to start eating food again and get that dang feeding tube out of her mouth. We decided that if she couldn't, she'd switch to the direct-to-stomach feeding tube since she's sick and tired of that tube up her nose. The popular belief is that stomach tubes aren't permanent like some people think.

Well, that's all for now. I'm happy not to have a litany of information to have to report because when that's the case it's all bad!

Sept 4 - Hurley ICU

We now have Mom under the care of Dr. Peddyreddy, Dad's doctor. Part of my problem with Hurley is that the docs won't communicate with me, period. They may be good at what they do but I could have no way of knowing that without any communication.

Dr. Amlani, Dad's heart doc who gave a second opinion on Mom's heart condition, really stepped up to the plate. He listened to my "customer service" concerns, suggested Dr. Peddyreddy take over as primary, called Dr. Peddyreddy's office for us, and wham! someone from Dr P's office visited Mom that day! I think Dr. A put it best... to the staff docs at Hurley, Mom is just a patient that moved to their department from PT. Since Mom's doc (Dr. Kinra) hasn't shown any interest in her coupled with the fact that she has a new nurse everyday, Mom never really had a medical advocate. (Dr. Kinra never bothered to follow Mom once she left McLaren. That is a generous statement since Dr. Kinra didn't really follow her in McLaren, either. She'd call me for updates!) Dr. P's office has visited Mom everyday since. Dr. P is out of the country but will return to make the visits himself next week, I think.

I visited Mom last Fri, Sat, and Sun. She was doing pretty much the same on those days. She's on a diuretic to keep her fluids down which has helped her heart. Her heart is testing fine except the one level that keeps track of inflammation was showing as too high so this diuretic has helped with that. Now that I think of it, I'm not sure if this is a temporary condition or something we need to be concerned with over the long run. This heart inflammation could be making it difficult for Mom to ween off the vent.

Mom hasn't had a temp in days.

Mom's having trouble weening off the vent. The mode that normally was no big deal for her when she was stable and all the planets were aligned is giving her troubles. She could only tolerate it for 3 hours the other day.

Hurley finally took her off the sedative that had caused her to hallucinate in a negative way at McLaren. A couple of us had to jump up and down and waive our arms and shout a lot to get her off this med. Amazing how they didn't know this.

I complained to the nurse manager, Chrystal, that Mom has a nurse that has never had her before the vast majority of the time. How can she be well cared for in ICU if her nurse never knows her? I got immediate results. Mom had the same nurse Fri - Sun. Let's just see if this wonderful event repeats itself.

We think my daughter has the chicken pox. That will impede my ability to go visit Mom this week. We were supposed to take our rescheduled vacation, the one that we post-poned at 4th of July because of Mom's illness, next week. Now, with Grace having the chicken pox, we may have to cancel all together. Wouldn't you know it?

Mom went into the hospital the day after Memorial Day. Well, it's the day after labor day. Poor thing, she missed summer all together!

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

July 29

Mom continues to be dumbfounded that her body doesn't follow the commands from her brain. The example she gave to me is that she can't process the fact that she can't jump out of bed to adjust her window blinds. One leg seems to be coming along better than the other. She has pretty good mobility with her arms and has a decent level of fine motor skills with her hands. It's her legs that are the worst and, coincidentally, the hardest to bring back.

They discovered that she has a touch of pneumonia. She is being treated with an IV antibiotic along with a very small dose of fluids. She still has MRSA (sp?) this is the short form of a really long name of a bacteria that is very resistant to antibiotics. She developed this at McLaren over a month ago. All this means is that you need to wash up when you visit her and that hospital staff take extra precautions around her by wearing gowns and gloves so as to not spread the bacteria to other patients.

She also is mysteriously nauseous frequently. She didn't tell the hospital staff for days but did finally tell them yesterday after my urging. She obviously needs to get the proper nutrients in order to build her strength.

We are having a family meeting with the discharge nurse this Tuesday at 1 pm. I am amazed that they'll have a discharge date for her already.

I visited her yesterday for a few hours then left when Dad arrived. I will visit her tonight for an hour or less at the kids bedtime. I'll go back on Tuesday to visit her.

Hurley Contact Info.

Mom is in a single room, #605 in "Six East". Her direct phone number is 810-762-6066.

July 26 am

Today is Mom's Birthday!

She'd tell you how old she is but I'll refrain out of politeness. Besides, I've already probably told you more about her than she'd care to know ;)

Thanks
It seems that the healthier Mom becomes the less frequently I post a message here. My apologies. I'll also take this opportunity to thank those friends of the family that have stayed so dedicated to keeping up on Mom's condition and for offering advice and help. The next paragraph has updates about Mom's current condition. I'm afraid that I may have forgotten someone.

• Family friends: Jan C, a family friend, was lined up a dozen times to take Dad to the hospital but something came up every time for us to cancel her help. The Wesileys helped keep track of Dad and also offered to take him to Detroit. Bob Keys, too.
• Cathy B from my Rotary has been gracious in offering medical advice as well as help for me and my family.
• Mom's neighbors have been helping Dad a lot, they took him to the hospital, watched Sassy, edged the driveway when Dad wasn't looking (because they knew he's stop them).
• Alice and Jim, Dave's Mom and Father-In-Law, waited on us hand and foot at their place the week day care was closed.
• Richard, Dave's Dad, offered to let Dad move in with him and to transport him to Henry Ford.
• These people took a good bit of time each to try to get Mom into U of M Hospital through their connections: Leslie K, Dan B, Bob C, Cathy B, Stan S. I'll also use this opportunity to plug the Brighton Rotary Club. I sent out an urgent message looking for help to get Mom out of McLaren and boy did they step up! All but one person in the UofM list I just mentioned was from Rotary. If you are community minded and considered a leader in your company, you should join Rotary because it you'll be joining the ranks of very good people who do a lot for the community, both locally and worldwide.
• Doris Longfellow kept tabs on my mental condition ;) Thanks Doris!
• John, my brother, flew from Va Beach to stay with Dad while I was at Alice's house. What a relief!
• Sign-A-Rama: My staff is wonderful. I was able to be away from the shop basically for 6 weeks without a hick-up viewed by the customers. They are a great bunch of good hearted people!
• Last but not least, Mom's immediate family: sisters Sue and Lisa, nieces Kim and Steph were as diligent if not more so than me at attending to Mom and Dad. I could go on and on but let's just say that they're the greatest.

Condition
Mom was transported via ambulance to Hurley Medical Center in Flint to their hospital rehab center on Tuesday, July 24, in the afternoon. They settled her in and she began OT and PT the next day. She is expected to work about 3 hours a day on her therapy. She was able to dress herself and bathe herself! While she is in good spirits, the fact that we're excited about these simple yet huge accomplishments mesmerizes her because in her mind she should be able to do this stuff with no effort. However, she wasn't the one at her bedside for many weeks in a row wondering if she was going to pull through this "incident".

Her oxygen levels stayed on the low side of the acceptable range while she was working out, so to speak. Her heart beat elevated, of course, but still in the acceptable range for her condition. She developed a low grade temp. I'm not sure if that's because she was working so hard or a result of her unresolved medical issues. Kim, the family nurse / my cousin / Mom's niece, visited her for a long time yesterday and reported these items to me. She also mentioned that they (Henry Ford?) neglected to remove her stitches from where her dialysis catheter was removed and that she has a soar spot on her heal from being bed ridden.

Visitation
Now that she's in Flint (thank God!), I hope to visit her 3-4 days a week -- probably Tues, Thurs, then Sat and or Sun. Dad will visit her most days. (Side note: Mom decided that Dad could drive himself but if anyone is heading that way to please take him with them so he doesn't have to drive too much.) It would be ideal if the family touched base with each other by phone or email to let the others know when they plan to visit Mom so that we can have even coverage.

July 23

Henry Ford put in the paperwork to request that Hurley Medical Center Rehab accept Mom Tuesday at 11 am. The woman that processes these requests at Hurley is off on Mondays so we hope to know early Tuesday if she will indeed be transferred. Cross your fingers! This is the rehab center that will give her at least 3 hours of rehab everyday. They expect that most patients will be ready to leave after 1-1.5 weeks. Since Mom has the right attitude, is a good patient, and has made great progress at HF, they expect her to get along just fine there. She can stay there up to 3 weeks if need be. The next step after that will be determined at that time.

If she is accepted, she will be on 6 east in Hurley. The number there is 810-762-7027. Visiting hours are 4-8 for anyone that will not be helping Mom once she goes home and 11-8 for anyone that will be helping Mom once she gets home.

I'll either ask Dad to pack a bag for her or will go do it myself. She needs comfortable clothes and shoes for her rehab! I find this to be amazing considering her physical state a few weeks ago!

July 21

Mom is supposed to get her trach removed soon, probably Monday! After that, she will most likely go to the Henry Ford rehab center where I'm now told that she could stay for up to three weeks but because her PT progress is so good, she probably won't be there that long. The step after that will be determined at that time. She will probably be transported by ambulance.

Dad and Aunt Susie visited Mom from Wednesday until today, Saturday. I hear that Aunt Lisa is going to visit her today. I'm trying to decide if I will visit her today or tomorrow still.

July 19

Miracles! Mom's Case Manager has put in a request for Mom to be discharged into a rehab center that will be capable of handling her trach care needs. The Case Manager has listened to us and is looking for a place for Mom in Flint. although it is possible that she may stay on the Henry Ford Campus if the Flint rehabs won't take her. Either way, I'm told that the longest stay allowed by insurance is 21 days but that the average stay is something like 13 days. Mom's ability to get strong enough to walk, etc, will determine her length of stay. I'm not sure where Mom will go after that but I assume it will either be a lower-need based facility or possibly at home with a home nurse stopping in to visit her (Kimmy!)

I forgot to ask about her hemoglobin levels!

July 17

I visited Mom today and she was doing the best yet. She was bright eyed and smiling. She has eaten well for the last four meals and asked me to get her ice cream. She was very happy when I also showed up with a fruit cup. She gobbled it up quickly.

No temps, no low blood pressure, etc etc. Her hemoglobin count is low but she is not experiencing any other symptoms so they aren't too concerned. Besides that, everything is great. She isn't expected to need dialysis again. She still has the trach only because she is coughing up so much secretions. At one point, I was told that she'd probably keep the trach until she was done with rehab just in case she went backwards. From what they say, healing from a trach is a piece of cake -- it doesn't even require stitches!

She is doing so well that they are teasing us with claiming that they'll release her to an intensive rehab clinic in a couple days. She needs to go to this type of clinic because of the trach. The Case Manager prefers that she stay at HFH but we're trying hard to have Mom released to a clinic that is housed within Hurley Hospital in Flint. The paperwork takes at least a couple days to process so they will process the release while they are investigating the hemoglobin issue.

Hip hip hooray!

Dad's neighbors took him to visit Mom today. I just tried to call him but didn't reach him. Aunt Susie is taking Dad to visit Mom tomorrow, Wednesday, and they will stay in the HFH apartments until Saturday or when Mom is released, whichever comes first. Jan, a family friend, may visit on Thursday and will offer to take Dad back with her then. I will visit her on Friday if she is still in Detroit or will visit her on Thursday too if she is in Flint by then.

July 16

On Friday, Mom's Case Manager called to let me know that they would be assessing her status on Monday and that if her condition stayed the same over the weekend that she may be released from the hospital to a rehabilitation center.

The problem is that she had a temperature yesterday and her blood pressure dropped pretty low so the infection is rearing its ugly head again. They put her on antibiotics. I am afraid that her release date may be pushed back. I'll call today to find out.

The Case Manager felt strongly that Mom should stay at the Rehabilitiation Center that is housed in Henry Ford Hospital even though it is not officially part of the hospital. She also told me that Hurly in Flint has one so I tried to talk her into releasing Mom to Flint but she wasn't very open to that idea. She said that ultimately, it's up to the docs. That decision may not be made at all today.

No one is scheduled to visit Mom today so I may try to get there for an hour or two. Dad's neighbor, Art, will take Dad on Tuesday and Dad will stay the night at least one night. Aunt Susie will visit Mom on Wednesday and may or may not take Dad home. I'm going to try to talk him into staying a few nights just to make getting him there something I don't have to worry about. When I ask him when he wants to go his reply is "I don't know, let's just wait and see." Easy for someone without anything but yardwork on his schedule to say! Wait and see = when Kaylee figures it out. Again, please let me know when you're going and please take Dad with you.

Kim and Andy took Dad to visit Mom on Saturday. Aunt Lisa and Jesse visited Mom on Sunday as did Dave and I. Dad wanted Sunday off.

July 12

No one visited Mom today. I spoke to her on the phone as best as I could. She said that she thinks that she may no longer need dialysis! The nurse told me that before they transfer her anywhere they'll ask us for our input so let's home somewhere close to Flushing is an option! I think she's a little lonely down there. I will visit her tomorrow for a couple hours then again on the weekend, probably on Sunday. I'll take Dad with me then.

July 11

Note: 1. Call before you visit her because she cannot have dialysis in this particular room. If you time it right, you may have to wait 3-4 hours to see her. 2. She actually is in room F2-21.

Today is my parents' wedding anniversary, 48 years!

Visitation: Aunt Susie is visiting Mom today; Dad my go with her. Dave took Dad to visit him yesterday. I may take Dad on Thursday if he wants to go. I need someone to take him during the week next week; Jan will take him during the work week too.

Nutrition: The ENT docs / speech therapists stopped her nutrition for some reason. She was given a liquid meal (jello, broth, etc.) this weekend when I was there but for some reason they act like that never happened. Either they didn't like the outcome or they didn't realize that the nurse experimented with the meal at the time.

Dialysis: She's still on it but her kidneys are doing better all the time.

Neuro: When I visited her the other day, Mom was visibly overwhelmed and missed my Dad and the family. I had Dad take all the get well cards that ended up at home when she transferred hospitals and also reminded him to take a card and flowers for their anniversary. My nurse friend, Kathy, told me that hospital staff love to see patients getting into "funks" because it's a great sign that a patient is on the right track. She also said that the staff love to see patients get grumpy because that's usually a sign that they're ready to be discharged. :)

Honestly, there's not a lot to report. She's doing wonderfully! As Aunt Susie said, all the prayers helped her get well. Thank you!

July 9

Please let me know when you plan to visit her next.

Mom was moved out of ICU today! She is in room F2-22a. She was moved after I visited her so I don't know where that room is located on the HF Campus. I was only able to stay a couple hours.

She misses Dad tremendously. I REALLY need your help in getting him down there as much as possible. Dave is picking Dad up tomorrow, Tuesday, and dropping him off to stay the night in the HF apartments. Dave will visit with Mom, too, of course. Then I need someone to get him on Wednesday. I will then take him to his doctors appointment on Thursday and can take him back up to the hospital on Saturday. Jan will take him one day next week. I need someone else to take him next week, too.

Her kidneys are still not back to normal but she was averaging 30 ml / hour of output today and that is the bare minimum the docs like to see. She's still off the vent. The speech therapist was supposed to come back today to further assess her situation. They still have no idea what brought on the problems that put her in ER; they probably will never know. She's off the antibiotics today, too!

The main goal in her new room is to assess her situation and to tentatively plan her physical therapy (PT). This may take a few days. She will keep her trach in until her therapy is completed in case she regresses during the therapy. If she is moved hospitals for the therapy, I will be sure to ask that she be moved to as close to home as possible.

I think she's getting in a mental funk from being in the hospital so long, missing Dad, and from having bad dreams. She wasn't watching TV today or playing her handheld games and she wouldn't let me get her something to read. It's too bad that she's so far away because now is when she would like the company. She doesn't remember all the time we spent at her bedside when she was so sick. I'm ashamed to say that now that she's not critical and since she's so far away, it's time to start focusing a little more on work and kids. As Aunt Lisa said, it's ironic.

July 8

I visited Mom yesterday and she couldn't be better considering all she's been through. Luckily for her, she doesn't remember the vast majority of it... we may all end up with much worse memories than her about this entire fiasco.b Kim and Dad visited her today.

She's doing so great that they're talking about moving her to a "normal" hospital room on Monday. She was eating, YES EATING, although it was all liquidous. The docs deflated the balloon that is used to help the vent because she wasn't using it. While she was on the lowest setting for the vent the previous evening for sleeping, she never used it. (It was in kick-in-when-necessary-mode.) She may not ever need it again, we'll have to wait and see. She asked to sit up at the side of the bed and did so for a long time after the nurse helped her to get in that position. She is fully alert, understands everything, is smiling, laughing, and try to communicate. The problem is that the trach is still in and it's not a talking type of trach so she can't communicate very well. She is so sick of spelling out letters by pointing to the alphabet that she's stopped doing it.

Open issues:

• She has some blood in her stomach that is from a nose bleed deep in her nose but is also possibly from irritation from the tubes that were in her throat and lungs -- or at least that's what I took from the conversation with the nurse.
• She is very, very week. She can't write, get up, move, etc. She will require a lot of PT and OT which should start any day now.
• Her kidneys are up and down. They don't know if they'll ever be the same but as Kimmy said, in the scheme of things, dialysis is better than the alternative that we were facing.

Visiting her:
I will visit Mom on Monday and take Dad on Thursday after his doctor appointment then again on Saturday. I don't know when anyone else is vesting her. If you go, please take Dad with you.

July 6

Visitation: John will stop in and quickly say "Hello/Goodbye" to Mom and drop Dad off at the hospital tomorrow morning, Saturday, then keep on driving home to Virginia Beach. I will visit Mom and take Dad home in the morning. Aunt Lisa and Aunt Susie are going together in the afternoon to visit her. Kim hopes to visit her on Sunday but that is not set in stone. She will take Dad if he agrees. Jan C will take Dad to HF next Thursday. Besides that, I don't know how Dad will get down there because I can't take him except for on Saturdays. I will try to visit her on Tuesdays and Thursdays mid-day, after I check into work in the morning then I'll leave before rush hour traffic engulfs me.

Diagnosis: Mom continues to do marvelously. The resident in charge of Mom's case gave me a little bit of a different story than the RN from the previous day. Mom's Pancreas Divisum started when Mom wasn't even born yet (gestational). The Pancreatitis probably pointed out this problem, which probably wouldn't have been a problem without the Pancreatitis. The Pancreatitis, it seems, may have been caused by a med that McLaren gave her via IV called something like TRM (I forget and am guessing here). It all boils down to the general antibiotics that HF gave her doing their job properly. Mom's blood cultures have never grown any goo, as I call it, so we may never know. Remember that the Pancreas issues could have caused all the problems she's been dealing with while in the hospital. It may not have been the cause of what brought her into the hospital. That issue may be fixed from antibiotics. No one can be for sure. Anyway, you could say that she's either a new woman or that she's the woman we all know and love, not the septic one that we cried over just earlier this week.

Kidneys: Awake but not perfect. Mom had dialysis today to give them a little break. The resident was clear that we don't know if her kidneys will ever be back to normal. She had normal output for only a couple hours in the last 24 hours which is great but not enough.

Neuro: Mom is awake, alert, smiling, and curious.

Lungs: Mom is basically off the vent. They put her back on the lowest setting while she sleeps at night so that her body can heal that much better.

Trachiodomy: The initial assessment today on Mom's Trach is that they need to do a more thorough assessment. She will have some kind of scope done on Monday to help determine the trach strategy. Having the vent for so long means that they need to figure out how she will learn to swallow, eat, talk, cough stuff up, etc. She may get a differnt trach that will allow her to work around the trach so that she can talk. The current trach completely closes off her throat.

Gut: Mom is off nutrients again because she has a nose bleed that is ending up in her stomach. The nose bleed is probably a result of her low hemoglobin count which is probably a result of the dialysis which is probably a result of the die contrast used in her ct scan two weeks ago that resulted in nothing which was a result of McLaren having no idea what was wrong with Mom which is a result of some incompetence on their part.

Incidentally: The nurse that was assigned to her the first two days that she was in HF approached me in the cafeteria today and asked me if I saw Mom yet. She was amazed because when she went into work today, she saw Mom and thought she was a new patient. She didn't know that Mom was the same woman she cared for in her darkest days. WONDERFUL!

I was so excited / distracted about how well Mom was doing today that I didn't get much more info to report to you.

Have a great weekend!
Kaylee 810-625-8481

July 5

Visiting: I will visit Mom in the morning on Friday; John and Dad will visit sometime during the day; Aunt Lisa will visit after work; Aunt Susie will visit sometime during the day. I need to have a one or two people take Dad to visit her next week during the work week. Please let me know if you're available.

Summary: Mom is a new woman! Not only is she stable, she's improving AND they think they've determined what started all of this nonsense. It's amazing at how quickly she has turned around, about as amazing as how fast she got ill. Remember, we almost lost her last week and that we've been excited about her status before. I just can't shake the notion that this one is for real...

Diagnosis: Pancreatic Divisum (I'll refer to as PD). See http://www.emedicine.com/med/topic3001.htm for details. The docs used Magnetic resonance cholangiopancreatography (MRCP) to diagnose the problem. They are pretty certain that this is the cause of each and every one of Mom's problems and not the result, not counting her negative reactions to some of the medicines and treatments.

Results:

Vitals: All are awesome.

Kidneys: PRODUCING! She's producing 15 ml / hour. While the docs want a minimum of 30 ml, this is a vast improvement over producing nothing for a week or so. No dialysis today. I assume that she won't need it much, if at all, if continues down this path to recovery.

Lungs: (1) OFF THE VENT! This will last as long as she doesn't need the vent. She may need to go back on it if she has a bad day. The Repertory Tech was clear that we should only look at this on a day by day basis and not to get too excited. She not only was off the vent but was off the vent without struggling. Every time McLaren tried to get her off the vent she had to work so hard to breathe that it would take her days to recuperate. (2) They are also weening her off of the steroids that they used to help her breathe because she doesn't need it any more. Because of this, she is no longer on the insulin drip; they are giving her a slow release insulin through her catheter as needed.

Gut: They are trying her on 10 ml of nutrition that is fed to her through a tube that is currently in her mouth (it used to be in her nose). This is the minimum amount that they give. They're waiting to see how that goes.

Temp: She hasn't had one in a couple days but the nurse today said that she's had a minor flair up here and there but nothing to worry about.

Infection: PD can lead to the infections that Mom presented. The docs still have Mom on a broad based antibiotic which seems to be doing the trick because none of the blood cultures have grown any goo.

Neuro: Mom was awake, alert, and more like herself today than I can remember. She is clearly bored because it's hard to keep her attention. I had to shake her hand a little to get her to look away from the TV. She is weak so she has a hard time pointing to the letters on the clip board to spell out words.

Tracheotomy: Because she's weening off the vent, Mom was supposed to be visited by a speech tech today to see what her vocal cord status is. They may trade out her trach with one that allows air to flow past it and past the vocal cords to get them some exercise. This will also help her to learn how to cough stuff up and out again since she hasn't had to do that on her own in almost six weeks. (Amazing, the things we take for granted.) I can't remember if this new trach will allow Mom to start eating or if the trach has to be out all of the way which seems more logical.

I can't think of anything else for now. Let me know if you have any questions and I'll make sure they get answered right away. Don't be afraid to use the comments. Just click on the word comments under the most recent posting.

Kaylee, 810-625-8481

July 4

I plan to visit Mom tomorrow morning but will leave by noonish for a business meeting. I don't know when anyone else plans to visit her. If you could leave a comment or post with when you plan to go that would be nice for the group at large so that we can work around each other or plan to car pool. Just select "comment" below the most recent posting.

John, Dad, and I visited Mom today. We waited in the waiting room for a few hours while she was having her test before we had a chance to visit with her. The resident in charge of Mom emphasized that her case doesn't look like cancer. They hope that the test will explain why her pancreas is inflamed -- probably from the gall bladder. The results of the test were not available.


Mom was what I would describe as overly awake but confused. Her eyes were wide open and she kept looking around and shaking her head in way that made me think that she was thinking "What in the heck have I gotten myself into?" in a shocked kind of way. She responded appropriately to most of the questions I asked her but sometimes she'd just look at me without a response.

July 3 part 2

John is going to visit Mom tomorrow and I'm not sure if Dad is going with him. I will go tomorrow and Dave may go, too. Aunt Susie plans to go on Thursday.

Dr. Burke called me this afternoon to let me know that Mom will undergo the MRCP test so that they can have a better look at her pancreas. The MRCP is the test where Mom will need to consume the die contrast. She isn't in the best shape for this test but the doctors convinced Radiology to do the test. Her pancreas is inflamed and there are two primary reasons why this could be, pancreatitis or pancreatic cancer. We're just going to assume that it's not the latter because that's just too unbearable. I'll post the results as soon as I hear them.

July 3

Visitation: John is in town and took Dad to see Mom. John will be around for about one week. I'm not sure when anyone is going to visit Mom. I will probably go on July 4 and then a couple more times before the end of the weekend. John is going to let Dad decide when he wants to go visit so I will report it if they actually come up with a game plan. Knowing Dad, they'll play it day by day. After this week, I'm going to try to visit her on T/TR/S. If anyone wants a ride on those days just let me know.

Neuro: Mom was more responsive on July 1 than on July 2. She opened her eyes for about 10 seconds when we told her we were leaving but we couldn't get her to open her eyes after that. The nurse tells me that Mom was following commands last night but isn't today, July 3. She may be tired from last night. She occasionally puts her hands on her belly, etc, so she's on the right track. If you really want to get a rise out of her, get in her face, she doesn't like that and she'll let you know it if she is alert... just ask Kimmy. ;)

Pancreas: The doctors noticed that she has "elevated levels" relating to her pancreas. They are calling it Pancreatitis. I think they discovered this from the CT scan. They would like to do a check that requires that Mom consume "contrast" but she's not well enough to tolerate that right now. This issue could be a result of her gall bladder too. See this link for some interesting information: http://www.webmd.com/digestive-disorders/digestive-diseases-pancreatitis.

Gut: The docs haven't made their rounds today (July 3) so I will call back later to find out what they have to say about her. Because of the Pancreatitis, they have stopped tube feeding her. She is getting some nutrition through on of her IVs.

Temp: She didn't have a temp for two days but she has a temp of 101 right now.

Everything else remains the same.

July 1

The docs have ordered an abdominal scan because now that she's stable they want to figure out what started all this to begin with -- yeah!

John just called. He's at Dad's house and will probably be there for a week. He will take Dad to visit Mom tomorrow, Monday. I will meet them there then they will follow me to Alice and Jim's house -- my in-laws with whom we are living next week so that they can watch the kids for us while day care is closed. This way, John can meet Carter and reacquaint himself with Gracie.

Kim and Stephanie, Mom's nieces, visited her today. Here's what they had to say. They checked in with very positive feedback. It seems as though more sedative has worked its way out of Mom's system because she was aware of her surroundings. She cannot speak because of the ventilator but she communicated with her facial expressions and with her eyes. Her vitals are all good without the assistance of medicine. Her gut is processing nutrition at the level they expect. The vent is still assisting her lungs. Her liver function is slightly better but still not normal. She's still on dialysis; kidneys still aren't working. She doesn't have a temp! Diaria continues. She's on steroids for lung assistance so her blood sugar is still high.

June 30

By the way, Mom's room is now C-5 12A at Henry Ford Hospital.

According to the day nurse, Mom is more stable than ever. Dad, Aunt Lisa, Jesse and I all visited from around 1:30 - 4:00. Kim (and Steph?) hope to visit tomorrow. John is coming into town. I doubt that he'll want to take Dad after the long drive. I expect that John will take Dad on Monday and at least one other time this coming week while I am staying in Novi. I think that Aunt Susie mentioned something about going on Monday, too, but I may be making that up.

Mom's latest update

• Infection: Still haven't located the infection. The cat scan of Mom's sinuses won't be analysed until the radiation folks come back to work on Monday; they don't work weekends.
• Blood pressure: Her blood pressure is good without any "pressers" (the meds used to keep her blood pressure artificially higher than it would be otherwise).
• Temperature: She didn't have a temp today!
• Gut: She's processing more nutrients than she has in days.
• Meds: The only bags that were being administered to her when we were there this afternoon were nutrients and insulin. She is being given steroids via needle in the pic (long term catheter) which continue to keep her blood sugars too high, hence the insulin. She will be given Venco Myasin (sp?), a broad reaching antibiodic) after her dialysis is finished.
• Kidneys: She is on the slow dialysis again today. The nurse said that this will help to slowly get rid of the sedatives held up in her fat cells. She is no longer medically sedated as of yesterday. Kidneys are still shut down.
• Lungs: The Respiratory Tech spend about five minutes going over everything today. While on the surface this seems like an inadequate amount of time, Aunt Lisa and I were overwhelmed at the amount of information that the McLaren Techs never gave us in comparison -- all this in 5 minutes! For instance, trechs are self-healing. Once Mom gets off the vent, the hold in her throat will heal itself without stitches, etc. The Tech reinforced the idea that Mom is not being kept alive by the vent, it is just making it easier for her body to focus on other matters rather than straining to get enough oxygen. She'd live without it, it would just take her much longer to heal. Her trech is getting dry and so there is some visible blood around it and it can sometimes get pulled up through Mom's mouth when she coughs. It's not too bad but it's not too pretty either.
• Mental State: The nurse rubbed the end of a pen along Mom's foot and she reacted to that. She seemed to try to open her eyes but they may have been open for about 1/8" of an inch. I didn't think to ask her to squeeze my hand, darn it.
• Adrenal Glands: Yesterday I mentioned her adrenal glands. Apparently I was the one that was high because the nurse swears she never said any such thing.
• Output: Mom continues to have diaria.

June 29

I continue to be impressed with the no-nonsense approach that the staff at HF take with Mom. They are not sugar coating anything. More than once I've had an ICU nurse stop me and say that she's not doing well. Amazingly enough, I appreciate this. McLaren just had nothing but positive things to say so we never 1. believed them or 2. knew what to expect.

John plans to drive to Michigan after dropping Madison off on Sunday. I don't know how long he will be staying but his focus will be on helping Dad and being with Mom.

Her kidneys are not working so she is on a slow dialysis again today -- takes something like 8 hours to complete. Her kidney functions are one of the biggest concerns to the doctors at this time. The docs will determine if she needs dialysis each morning.

She's on steroids to help her lungs which are causing her sugar to go high again. She's averaging around 220 which is way high to the average person. She is on an insulin drip. She is on full vent. Her lungs are the other major concern.

She continues to have a temperature from the mystery infection so they are giving her two broad based antibiotics. Mom reacted to a key antibiotic, venko myasin (sp?) at McLaren so they stopped it. HF doesn't like this approach. Their theory is who cares if she gets a little itchy or if her throat swells, she's on a trech anyway. They will administer vm at a slower pace because they feel that it may reach a bacteria that other antibiotics don't.

She continues to have diaria which could now be from the antibiotics.

Looks like her adrenal glands are shutting down -- I have no idea what that means.

Her blood pressure is better today. They took her off of one of the medications used to keep her blood pressure up. They were very positive about this move.

Because her blood pressure is better, they are stopping the sedatives in hopes that she'll start coughing the build up of secretions out of her lungs. It will take a long time for the sedative to work its way out of her system so she won't wake real soon.

Her liver is starting to fail. She has that yellow color about her although I swear it became better after the four hours I visited today. The nurse said that it's common for the liver to shut down if the kidneys are down for any amount of time. The liver is a follower.

She is managing to process the minimal nutrition (10 units) they are giving her.

They are taking new blood cultures all the time; it's too early for those results.

Because of Mom's sinus drainage, they will take a cat scan of her sinuses tonight at 8:30 pm. Results won't be available until tomorrow.

Ma is septic. Her doctor explained that people in her condition in Michigan don't survive this on average 70% of the time. HF is much better than that, 40%.

Pray.

June 28

I didn't visit Mom today but I called for an update. Jan, a friend of Mom and Dad's, has offered to take Dad up to the hospital one day next week and probably on a weekly base thereafter. I will take him day after tomorrow (Saturday). He probably won't go with me on Sunday by his choice. Can someone else let him tag along with him one day during the week next week?

Mom's blood sugar is again perfect.

Mom's temp continues to be high which is a worry to the doctors. They started using a cooling blanket as of this afternoon and her temp reduced to 99-100.

The doctors continue to be worried about her kidneys; she has no urine output. They don't appear to be doing their job. She will be on dialysis on an almost daily basis not just for cleaning her blood but also to maintain proper fluid levels -- it extracts extra fluid.

Her stomach continues to not digest any traceable amount of food.

She is medically sedated otherwise her body has the natural tendency to work too hard to fight the so-called infection. She has a tendency to breath too fast which wears her out even more. She's out cold.

They started taking tests as soon as they had her situated. The cultures will take many days to yield the results they want. Those results will determine what, if any, kind of infection (s) Mom has.

They performed a tube-eco (sp?) on her heart to see if there is anything funny going on there.
Henry Ford only allows one family member to be the primary contact person with the hospital and Dad asked me to take on that responsibility. So if you want an update via phone, just give me a call and I'll make that happen for you right away.

June 26

Pray, hope, cross your fingers.

I cannot thank you enough for all your help in getting Mom into UM Hospital. Thanks also for your well wishes.

About her location:
Time is up, we can't wait anymore. I found a lot of allies in getting Mom into UM Hospital but my efforts to will Mom into that hospital yielded no results today. Ann Arbor said no again this evening. The Mayo Clinic in Clevland still has no bed for her so we decided to go with Henry Ford in Detroit which just cleared a bed for her. She is being taken via helicopter probably around 9 pm; she's in no condition to be driven. From what I've been told, once you transfer someone to another hospital, UM Hospital is really unlikely to take her. If you believe otherwise, please let me know.

About her condition:
Mom's condition is unchanged today except that her stomach wouldn't process nutrients where it did a little yesterday.

About her room:
Her room number is C5-13B. The phone number there is 313-916-1631 (or 313-916-3948 if the first number doesn't answer). Visiting hours are 24 hours but I'm told that the nurses prefer that we go during daytime hours to help keep Mom on a day/night schedule. The address there is 2799 W. Grand Blvd, Detroit, MI 48202-2608, near the Lodge which is under construction so getting there should be interesting.

What About Dad?
I am just plain too exhausted (mostly mentally) to make the drive there tonight so I will call tonight and go in the morning. I'll take Dad with me, I assume. I need to have a talk with him about allowing other people besides just family to help get him get there otherwise he won't be able to see Mom very often. I don't see mass transit being an option for him. I hear that Henry Ford has apartments for families who have to travael as far as ours. I'll investiage this option further but I know Dad, he won't want to stay there.

What About Kaylee?
I am thankfully surrounded by great people. My kids (can't resist, see attached) and my husband keep me sane; my Mom's sisters and their daughters visit Mom and help with Dad as much as they can; and my staff keep Sign-A-Rama working seemlessly without me.

Pray, hope, cross your fingers,
Thanks again,
Kaylee

June 24

• Sorry for all the details... I don't know how else to let you know what's up with Mom. All in all, she is slightly better than yesterday.
• U of M told McLaren today that they don't have room for Mom. I don't know if this could change tomorrow or if they are saying that they won't accept her. I plan to investigate further. McLaren is asking Henry Ford to take her but we won't sign off on it until we find out more about Ann Arbor. First, I want her in the best hospital and second, downtown Detroit is not exactly convenient for anyone. Ann Arbor would be much better for me personally -- not that that matters.
• Mom's temp continues to fluctuate. At 9 pm it was at 102.
• Her blood sugar is also up a little from the decent reading from earlier today but that's being controlled by insulin and is nowhere as bad as it was yesterday at this time.
• Her kidneys were not working at all for the last 36 hours but she produced 15 units (ml?) of urine last hour. A normal person generates at least 30 per hour but considering she produced 10 in five hours yesterday, things are moving in the right direction.
• She was awake on and off when I was there this afternoon but she was not very communicative.
• Her stomach decided to stop working this afternoon but that may just be a result of her body self regulating where the blood is going like to help keep her blood pressure up. A break for the stomach isn't bad for a short while. When I just touched base with the hospital, they said that her stomach was empty so the small amount of nutrients they left in her stomach 4 hours ago has been used so that is also moving in the right direction.
• Her blood pressure is artificially OK. The medicine they use to keep it up damages the kidneys as does just about everything they've done to her so far so the fact that her kidneys shut down after having the die used in the cat scan isn't very surprising to the hospital staff. This sounds bad but it is a risk we took when we allowed them to give her the cat scan to check for the swelling in her small intestine and the antibiotics to control the infection (yet to be diagnosed), etc etc. The kidney doctor feels that her kidneys will right themselves soon. Cross your fingers and pray.

All this from the flu. DO NOT LET ANYONE YOU KNOW LET THIS HAPPEN TO THEM!

I'm taking Dad up to the hospital tomorrow around noon assuming that she's staying at McLaren tomorrow. As we figure out where and when she'll be at another hospital, I will start putting the game plan together for getting Dad there. Thanks for your help in advance!

Kaylee

June 23

The good news is that the swelling in Mom's small intestine is down compared to the first cat scan she had a while back (2 weeks?).

The bad news is that the die they used in the cat scan may be the cause of her current kidney failure; she has had a number of negative reactions to standard medications this hospital trip. She's on high doses of insulin which the nurse tells me can't be sustained for long; dialysis is not out of the question. She has a temp of 103.5. Her blood sugar is off the charts high (doc says this may be from a domino effect... her kidneys not working properly may be causing her pancreas to not work properly). Her blood pressure was down to 60/43 at one point. It was 116/43 when I left at 8:30. Her heart rate was around 111 -- not too bad. The vent is doing all the work of her breathing -- which is via tracheotomy now so at least all those tubes are in her mouth.

To say that she was lethargic for a good part of the day could almost be described as an understatement. Once her sugar came down a little around 7 pm, she woke up and was very alert and aware, almost like she just woke up from a nap; albeit, she was very weak. I was happy to be there because she held on tight to my hand until she told me to go home and be with my kids.

I'm hoping that history repeats itself. Every other time Mom has had a bad day during this hospital trip, she's been very strong and in much better condition the following day. I hope to report that to you tomorrow.

We are waiting for the hospital in Ann Arbor to accept her which probably won't happen before Monday, if it happens on Monday.

At that point, I am going to need even more help with Dad.

I hope that he'll stay with me in Fenton on Saturday nights so I can take him to Ann Arbor on Saturday and Sundays without having to go to Flushing and back both days. Ann Arbor is close to my work so I'll visit Mom a lot during the working week as will Dave, my husband, who works in Ann Arbor. However, that makes it hard for me to get Dad there during the week. I would be ecstatic if a couple of you would offer to take him once a week on a regular basis (something like, "I'll take Tuesdays."). You know Dad, he'll resist the help but he simply can't drive that far -- he blacks out too often from his strokes.

I wish I had better news to report. Nonetheless, I still feel like she's going to pull through this. Like Kim say, "Aunt Lou, we'll be drinking iced tea on your porch talking about this next summer."

Looking forward to looking back on all of this...
Kaylee

June 21

Mom continues to be more more like the Lou we all know. She's starting to take a more active stance on her treatment like suggesting to the nurses how to ween her off of the vent, etc. This is wonderful!

She continues to have a low grade temp with diaria and is still on the vent. After an hour or so of being off of the vent (this is how they ween), she gets too tired from labored breathing. She agreed that it is time to go on a tracheotomy type vent. This will give her more comfort and will greatly reduce her chances of getting pneumonia. It will also help her to start healing her voice box which typically gets damaged during oral vent procedures. The nurses swear that the trach vent is sometimes what it takes for people to get off the vent that have troubles getting off of the oral variety.

Today, the doctor agreed that it may be a good time to transfer her to Ann Arbor. Everyone agrees except for Mom! I believe she's worried about Dad driving to go see her which simply won't happen; this I will ensure. She said she'd think about it over night. With any luck, she agree and then we'll get the ball rolling. If she doesn't agree, well, then, we'll have to figure out how to convince her. Even though this will be a lot more work for all of us to go see her; it's in her best interest. The one good thing about her being in Ann Arbor, besides the superior medical staff, is that Dave works near the hospital and plans to visit her at least once a day when he's in Ann Arbor. What a great guy!

If you have any questions, comments, or elaborations, please reply to all.

Have a great night,
Kaylee

June 20

I didn't visit Mom yesterday because I have the start of a cold and I needed to actually go to work for a change.

Dad told me that Mom looked the best she has looked yesterday since she's been in the hospital. She was smiling, her eyes were lighting up, etc.

The problem is that it has been over three weeks and we still have no answer to the continuing watery stools (5 weeks now?) and no forward progress on weening her off the vent. She's frustrated, I'm frustrated, everybody's frustrated. I talked to Dad about switching hospitals yesterday and he reluctantly agreed.

I will try to set up a meeting with the docs today, Thurs, around 3 pm to talk about moving her. I suspect that they'll be friendly about it and I hope that they'll tell us where the best place is for to be.

Let's get Mom back!
Kaylee

June 19

Hello all! Mom seems more of herself these days. Yesterday, they had her sitting in a chair without the vent for an hour but that wore her out so when I saw her all she could do was sleep. She'd fall asleep while I was talking to her.

The colonoscopy of her colon and large intestines that she had on Monday gave no new results. She continues to have watery diaria but it is only a few times in a 24 hour period.

They hope to run some kind of barium test today if she has the strength. She will be out of her room for 3-4 during the test. They're hoping that this will tell them what, if anything, is wrong with her small bowel - a likely source for the watery diaria.

The doctors aren't actually sure if she has pnumonia -- the sputum results have not supported this yet. So they are taking an educated guess that that is why she's basically had a temp for the last week.

Dr. Lo, the infectous disease doc, is running all the same tests they ran on her when she was first admitted to make sure she hasn't developed anything new from being on a vent in a hospital for so long.

Aunt Lisa is taking Dad to the hospital today and future Wednesdays.

My business is struggling right now so I need to make sure that I have coverage at least three (four is much better) business days each week. Kimmy, Steph, can either of you take Dad on Thursday or Friday? If not, Dave will leave Ann Arbor early to go get him. I will take him on Saturday and Sunday mid-day.

Pray that she finds the strength to breathe on her own.

Love you all,
Kaylee

June 14

The afternoon doctor decided to take Mom off the vent because she seemed depressed and her progress in getting off the machine was stalled. The logic behind this move still eludes me.

I just called for an update at 11:30 -- way past my bedtime! They ended up putting her back on the vent at 8 pm. Her blood pressure dropped. According to the nurse this is because she was working so hard that when her body figured out that it could rest, the blood pressure dropped a little too low, which is supposedly common. She's only on 2 units of the L medicine that keeps her blood pressure at safer levels.

The meeting I tried to call never happened because the doctor decided to make decisions on his own, apparently. The social worker is on vacation, I found out today, after nurses leaving her messages on my behalf. You'd think someone was checking her messages!

A special note... let's not discuss who's picking up Dad in front of him. It makes him feel bad.

I need to know more about the trechia ventilation. This could be permant??? This is new news to me.

We need to figure out what the long term game plan is if things continue as they are. But, I am also afraid to move her while she's so delicate.

Kaylee

June 13

Overall, Mom seems not to be loosing ground but any ground she's gaining is slight. Mom was off the ventilator with just oxygen for an hour and a half today but she was too pooped out so they put her back on the vent with 50% oxygen. They tried a few hours later again but she tired after 30 minutes. They decided to put her on full oxygen and vent until tomorrow. They won't consider taking her off the vent permanently unless she can go without it for about a half day.

Yesterday's excercises tired her out too much for any excercises today.

I was getting very upset about her lack of response when it dawned on me that maybe she was having trouble hearing. Lo and behold, I asked her if she was having trouble hearing and her eyebrow reply was, "What?". She then confirmed that she was having trouble hearing. I asked Gina, my favorite nurse, and she said that the antibiotics she is on will cause hearing problems (temporary and / or permanent) and that she'd let the docs know.

I am concerned about how long this is taking. I again find myself struggling without knowing the game plan so I'm going to make sure I learn what that is tomorrow. I'll try to set up a family meeting with the social worker and doctor for near the end of the business day. If you're interested in attending, call me and if you don't get me, leave a message at the nurses station for me.

Aunt Lisa, I'm sorry I neglected to mention that you're sick in the email last night. I had full intentions of doing so but it slipped my little, frazzled mind.

I'm taking Dad to a 2:40 appointment with his Cardiologist then we're heading up to the hospital to visit for a while after that. I don't know when anyone else is visiting tomorrow. Friday, I will try to get up there from 8-9 am. Kim is taking Dad up for a visit sometime, maybe late morning or early afternoon.

Today, I didn't have time to check on hospice but I'll ask the social worker about it tomorrow. It's scary that Mom wouldn't leave Dad alone anymore because she was so worried about him and now here he is by himself all the time. I wish he'd move in with me!

That's all, love you, take care,
Kaylee

June 12

Mom is looking better every day although now she is clearly in a funk either from her situation or the low level dose of anti-anxiety drugs. They had her sit in the chair again today. The ventilator was on CPAP (?) for 4-5 hours in the afternoon after a failed inital try in the morning. She just had no interest in communicating -- not just talking but listening, too. We need to get her off that damned ventilator! Something came back negative on her spudum (sp?) so she's in some kind of isolation -- just thoroughly wash your hands and don't take in food or drink and you'll be fine.

Can anyone commit to taking Dad up on hospital while Mom's in ICU on Tuesdays? Anyone for Fridays? I really need to try to establish a regular schedule so that I don't go nuts.

You know that your help is very much appreciated.

Who's taking Dad to the hospital:
(Please call him directly the day before to make arrangements -- I don't need or want to be involved.)
Today - Kaylee
Wed-Steph
Thurs-Kaylee
Fri - Kim
Sat - Kaylee
Sun - Kaylee
Mon - Kaylee
Tues -???????????
Wed - Aunt Lisa (and all Wed going forward)
Thursday-???????????
Friday-Kaylee

On most days when I don't take him, I will probably visit Mom from 8-9 am then head off to work in Brighton. I will start looking into home hospice tomorrow.

Calling everyone with an update is turning out to be an hour long project everyday. If you want an update, please give me a call. Otherwise, check your email; I'll send updates.

Thanks again all -- I love you!
Kaylee

June 6

Aunt Susie: I suspect that you're awake now but I don't want to call and risk waking you. I just noticed your voice mail, sorry for the delayed reponse.

I wonder if you're available to go up to the hospital tomorrow? I hope to be there 8-9 am by myself then again from 12-3 pm with Dad. I'd like Mom to have someone else visit her for a few hours after that -- I'll leave the time up to you.

I was there until 2:30ish today when Aunt Lisa took over and stayed until 6ish. We were the only two to visit Mom today. Mom was looking great. She doesn't seem to remember her comments about evil people so please don't mention it to her. She was nonchalant about being by herself tonight so I decided not to keep up the 24 hour vigil. I want to stop up there early tomorrow just to make sure she was really ok with it.

They attempted to remove her vent today but, in my uneducated opinion, they took the fast track and it stressed Mom's body out too much. They put her back on the vent but it is doing less work than it has in the past. Basically, they need to give Mom's muscles a little more time to get used to breathing all the time. I think she tried so hard to breathe by herself that she wore herself out. Keep your fingers crossed that they can remove the vent tomorrow with no complications. Although, don't be surprised if it doesn't work again.

That's all for now. Please call me to let me know if you can make it tomorrow. Kim, Steph, Andy, Dave, Aunt Lisa, and I all have conflicts.