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.