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.