Moving Postponed

My mom and sister went over to Annapolis today.
I haven't heard much, but here are the key points:

• Grandma has another urinary tract infection.  They started her on antibiotics today.
• As a result, unfortunately, today was NOT moving-to-the-rehab-place day.  She will stay at the hospital another few days until cleared of infection and then she can move.
• Mom said Grandma was sleepy but that she looked good.

I'll probably have more news tomorrow once I've talked to my mom, but I expect it's a lot more of how Grandma has been in the last week.  Keep up the happy thoughts and prayers for Grandma to get over the infection soon, move to the new facility, and get focused on her rehab!

Follow up:  My mom left a comment on this post; click below to see it! :)

Sunday 3-17 Pictures

Click any image to view a larger version...

 Getting comfortable in the morning

Listening to fun, happy music on YouTube videos on Grandpa's Macbook Air

Even the dentist sent flowers for Grandma! 

Other members of the "press corps"!

One of my moms "motivational signs" for Grandma :) 

Lunch in the cafeteria at the hospital.  Grandpa has taken to the place, suggesting to Grandma, "When you get better, we should come back here to eat; the food is good and there's free parking!"  She thought that was funny, but I'm pretty sure Grandpa was serious...  :)

A Better Day - long post

Today, I (Christina) visited with my parents.  We arrived trying to feel positive and wanting to talk with the doctor about things, and it was a pretty decent day all around.

Grandma was very sleepy again, but the nurse says she does not remember anything from yesterday -- the nurse had asked Grandma earlier this morning whether Grandma felt good today [yeah] and whether she felt better than yesterday, and Grandma basically said she didn't remember yesterday.  I wonder how much of this is her difficulty with short term memory and how much of this is due to the amnesia medication they gave Grandma before surgery (sedative and would keep her from remembering anything from surgery)-- maybe it took awhile to wear off and messed with her mental processing and ability to remember anything.  In any case, we were all kind of happy for this...

Grandpa arrived shortly after we did.  We played some music, talked to Grandma, tried to encourage her to wake up and sit up a bit.  Grandma complained of feeling "dopey" today, and we reassured her that we were going to check but that we suspected that some of her medications could cause drowsiness.  She seemed to accept that as a decent explanation, perhaps even feeling like, "Ok, so it's not just me, it's the meds." (In fact, I ultimately looked up these drugs in the afternoon and most of them did list drowsiness or tiredness or similar symptoms as potential side effects, and I'm sure that with all of these combined it wouldn't be a surprise if at least one was making her a bit sleepy.)

The nurse we met today was wonnnderful.  She was great to talk to and was attentive to make sure Grandma was receiving things as needed.  While it took awhile for her to get some information she was good about following up with us and making sure we had a chance to talk to the doctor (Dr. Timothy Woods).  That doctor was also wonnnderful and was happy to stay and talk and explain things!

This is what we learned today:

• There are two types of strokes: clotting (ischemic) and bloody (hemorrhagic); Grandma's was hemorrhagic, and caused a bleed a bit bigger than a golf ball deep in Grandma's brain.  The doc described this as "not huge," "not a major bleed," but not itty bitty.
• Clotting strokes (where part of the brain stops receiving blood due to a clot) have a relatively "predictable" course of recovery, often described by the time it commonly takes to achieve certain milestones ("three days, three weeks, three months"). 
• Bloody strokes (where a sudden bleed causes parts of the brain to have trouble functioning by putting pressure on parts and messing up neural transmissions) are a little trickier, recovery is much more variable. 

• Part of this is because we have to wait for this blood to get reabsorbed and see how things improve.  The doctor said this could take a month, month and a half or so, and we will see some improvement just from that over time.
• The other reason recovery is a little more variable and harder to predict is because we don't know how her brain will do while things develop-- I think the doctor indicated that it's possible for parts of her brain to recover better than others, since the blood on her brain will ultimately affect parts her brain more or less than others. We will just have to wait and see how things go.
• While she will continue to improve, the question is also when will that improvement level off (probably some months down the road, or longer, depending) and what level of improvement there will be.  He seemed positive, but again we'll have to see.
• The doctor said he thought Grandma was "progressing as expected" and that her sleepiness was totally normal.  He assured us that her alertness will continue to wax and wane until her recovery reaches a stabilized point, but that in the meantime it is good for her to rest.
• The stomach tube, he reiterated, is a temporary thing.  The NG (nose) tube she had is pretty irritating to have for too long (He said almost all patients will rank it worse than any other medical tube including IVs and catheters.) and that this gastric (stomach) tube will not only be more comfortable, but it will help her as she learns to swallow better.  (She has trouble controlling the back of her throat, so this is something she will continue to work on in rehab.)
• Grandma will keep this tube for maybe 1-2 months.  He added that, "If, after that time, we see no improvement or a deterioration in her condition and ability to feed herself, then you have to ask yourself a philosophical question about, 'what are we doing here,'" but reiterated that he thought she was making good progress and didn't anticipate things getting to that point.
• Because she still has occasional issues with swallowing, her ability to take food by mouth will take some time and has to be with the approval of and probably under the supervision of a Speech and Swallowing therapist, but in general she is getting there and has shown she is capable.
• Grandma's chart shows something about "DNR" status (Do Not Resuscitate); between the nurse and the doctor, neither was entirely sure how that was in her chart, who put that there, and why, but the doctor said this is NOT affecting how they care plan for Grandma and that it would only come in to play if her heart were to just stop and he did not anticipate that happening.  (I imagine Mom/Rosemary will investigate this further when she returns to the hospital tomorrow, but I don't know...?)
• The doctor also apologized for some of the communications about doctors dropping by being inconsistent, saying that they've had to shuffle a lot of staff around due to people being out for illness, and one of his doctors had to leave for his mother's funeral, so it's been a bit of a struggle covering everything.
• THE BIG NEWS TODAY:  Because Grandma received the gastric tube Saturday morning and was starting back on food (via tube) today, assuming she tolerates that okay (which she should because it's the same stuff she received through the nose tube), SHE CAN BE TRANSFERRED TO REHAB TOMORROW!!  
• The doctor said that assuming everything goes smoothly, she can be transferred to that place in Heritage Harbor near their house (so close, Grandpa could walk there).  Hooray!
• What might hold this up is if the facility doesn't have any vacancies, or if they have some other reason they can't admit her at that time, but we have our fingers crossed that everything will go great tomorrow without hiccups.

Grandma listened through most of this entire discussion.  She picked her head up and followed everything pretty well, and seemed encouraged by the doctor's positive attitude about the whole thing... and the prospect of moving tomorrow.

Mom, Dad, and I left around 4 PM, but I understand that Grandma had physical therapy at that time and while she struggled a little to keep up she completed everything "reasonably well."

I might add some other anecdotes tomorrow if I can, but really that's the BIG NEWS today so I think it's a good place to stop for now.  I also have a number of photos to add from my camera, and I'll try to do that tomorrow too.

 KEEP UP THE HAPPY THOUGHTS 

Saturday 3-16-2013 Pictures

A Difficult Day

[Written Sunday 3-17-2013. Again, it's been a rough weekend. Sorry for the delay... -Christina]

Elizabeth and her fiancé Jerome visited, as well as Joyce.  In the morning, they all cleaned Grandma and Grandpas house, vacuuming, cleaning the kitchen and bathrooms, running laundry, etc. so now the house is super clean which I'm sure Grandpa appreciates.  It's hard doing all of this on your own, especially when you're not used to handling these things to begin with.

The afternoon was kind of difficult.  While the gastric tube surgery went well, and Grandma was happy to have the visitors, my sister reported to me late in the afternoon that at some point Grandma all of a sudden started saying things like "I'm done." "I want to go home." [Not home to the house, but home to God.] "At this age, it's ok." [Kind of like, I'm ready to go, I've had a good life.]

Naturally this was upsetting, and they weren't really sure how to take all of this.  This isn't inconsistent with Grandma's previously-mentioned wishes (prior to the stroke) that she didn't want to live "hooked up to a machine," but considering Grandma's progress it was really hard to hear her go on like this.  I wasn't there, so I don't really know how things happened after this, but looking back the general thoughts going on that evening via emails and phone calls included:

• We know Grandma's wishes, and this is her decision, yes.
• However, it is kind of also our duty to be encouraging and help her stay positive while she still has a good prognosis -- and her treatment is still focused on recovery, not just "making her comfortable."  She is not dying and not being sustained merely by machines. 
• We should still have hope for all of this, and will have to see how she feels tomorrow and the next day... One day at a time.

So yeah.  Saturday was a rough day. I think we were all emotional wrecks, trying to process this information and figure out where to go from here.

I had a giant piece of greasy pizza from the grocery store for dinner, I just didn't care. But I felt a bit better later in the evening after I had some time to think and get back to focusing on what comes next. <3

One day at a time...

Friday 3-15-13 Pictures

Here, Grandma is reading someone's card.  

She could read the printed words, but had some trouble with the handwritten note... but then, even my mom couldn't figure it out entirely!

Grandma and Grandma really enjoy all the wonderful cards she's received. :)

Friday 3.15

[Sunday 3-17-2013] Sorry it took me so long to post; it's been a rough few days at work, home, and everything else so it's been hard to find time to sit down and write...  -Christina

Mom/Rosemary had a meeting with that Chesapeake Palliative Care (?) girl - Heather Travis.  She seemed utterly clueless as to what we've heard from the other nurses as to Grandma's progress, saying things that were really not true (saying things like that Grandma was not doing as well as the actual doctors have told us, etc.)!!  So strange.  In fact, I'm not even going to summarize anything she said since she was really off-base.  We're not really sure how she came by (whether she was sent by the hospital or not), but I personally suspect she was from some post-hospital-care facility and was trying to get us to transfer Grandma to their place so they could have our money.  How slimy!

ANYWAY!

After the meeting, Mom and Grandpa went back to the room and played some fun German dancing music and Andre Rieu videos for Grandma, and she really enjoyed this.  She was sleepier this day, and we suspect that some of the medications she is on have side effects that would be causing the sleepiness.  She is not on a ton of medications, mostly drugs for blood pressure but also something for her restless legs and Tylenol.  In any case, we hope to investigate that some more over the weekend.

While Mom and Grandpa were at lunch, this really sweet care technician came by. Mom says she had cute flowery tattoos and said she was "really sweet, so so kind" with Grandma.  She gave Grandma a bit of a BATH!  Cleaned her up really well.  "Mom looked great!"

After lunch, Mom and Grandpa found more YouTube videos of Grandma's favorite music -- Heino, Gerard Cox, Andre Rieu, and Freddy Alexander...  (Thank goodness for free wifi in the hospital!  This has been wonderful.)  Grandma was sleepy, but she really enjoyed the music, smiled, and mom even took her hands at some point and "danced" with her. Ha! So cute.

The hospital folks talked to Mom and Grandpa about Grandma's nutrition. Up to this point, Grandma was receiving her nutrition through a nasogastric tube (NG tube), the tube down her nose and throat to her stomach.  This tube is kind of a temporary fix (inserting it isn't a surgical procedure, just gets the job done), and it does make things a little more difficult with swallowing, could make some things irritated, etc.  So the next step would be to switch to a gastric tube, a tube from her stomach to outside her tummy where food and medications can be given that way. This is a very common procedure, and in Grandma's case is seen as a temporary setup, until Grandma can meet all her caloric needs eating food normally.  So the plan was to have the surgery this Saturday morning.

All in all, a lot of the same from earlier this week.  Kind of sleepy, but not unexpected.  Still need to keep Grandma positive.  I can't remember if I've said this before, but Grandma does have times where I don't know how clear her thoughts/understanding is but she will say things like, "I'm 90 years old..." "I don't know if I can do this..." "There's an end to everything..." and we have to remind her that she is not dying and is in fact doing very well.  There sill be difficult days, but everyone thinks she is progressing as expected and should focus on recovery.  Of course to what real extent of recovery remains to be seen, but keeping Grandma positive is very important right now.

Thanks for keeping her (and Grandpa) in your thoughts.  The cards and notes are wonderful!  We love to show Grandma her cards and re-read them with her to remind her how many people love her and are thinking of her.  :)

Thursday 3.14

[Sunday 3-17-2013] Sorry, this was up Thursday, but then I had to edit it and forgot to re-post! So sorry!
-Christina

...........................

I haven't really heard anything since Tuesday, but hoping that "no news is good news" and assuming the last couple days have been a lot more of the same as earlier in the week.  Some reports below from Grandpa and Joyce.  My mom/Rosemary is going tomorrow for a meeting with a lady involved with the ultimate moving of Grandma to the rehab facility.  We'll see what she says.
-Christina

...........................

From: GRANDPA
Date: March 14, 2013, 11:20:30 AM EDT
To: ROSEMARY
Subject: Mom this morning

Nurse Stacy still here, but not tomorrow.
Told me occupational therapist was here & Mom did pretty good, but now she is worn out. I put the music on which she wanted low but follows attentively (moving her finger). Nurse had fed her some apple sauce, which she swallowed readably well, but they have to take some kind of test to check whether it actually goes to the stomach.
Another important point. Nurse said that under some kind of rules she may be considered ready for moving to the rehab pretty soon. If she does not properly swallow they would put some kind of tube in surgically to her stomach!  She talked like this was often done. She said she would hope they could keep her at least over the weekend! Of course I emphasized I would like to keep her here until she can move without a tube. (Mom just asked me to raise the music volume ). Stacy just said the speech was ready to come, but they agreed to postpone until later, hoping she'll be more perky  then.  Mom's legs also became restless again so they'll give her some Tylenol.

...........................

From: GRANDPA
Date: March 14, 2013, 6:43:42 PM EDT
To: ROSEMARY
Cc: JOYCE
Subject: Update  at end of today (Thu, March 14).

Around 1:30 I left Mom's room to spend some time in the cafeteria, and after I came back a  rep of a group called Palliative Medicine Consultation, Heather Travis, NP, was waiting to meet with me & mom. At my suggestion she sat down with me, away from mom's hearing. (Actually, I just noticed that the name of her office is Chesapeake Palliative Medicine (445 Defense Highway) and I'm not sure now whether she is on the staff of the hospital).
Anyway she said that at some point a decision will have to be on how to proceed with mom, namely to move her (to a rehab center) with or without a tube (either thru the nose or to the stomach), and that all these methods have risks. For example, even with a tube, the patient could inadvertently take food by mouth, and in all cases food could wind up in the lungs. I don't think Mom at this time is able to make decisions about this and I said  I would consult with my daughters and that you would come in tomorrow and Joyce Saturday. She then suggested and I agreed to a meeting tomorrow at noon (if you can't make that let me know) and she then said that they could set up what she called a speaker phone connection so Joyce could participate). So I hope you two can have a preparatory get-together by think of questions, etc to ask this lady, who said she is member of a team that recommends or decides what to do. She seemed a very friendly and informed person. I am certainly glad however that you had decided to come here tomorrow.
In general Mom seemed to be kind of tired (sleepy) today. Nevertheless I think she did very well with the therapists. Particularly with the speech therapist checking on her swallowing. She ate a whole container of that apple sauce (about 12 spoonfuls!) and after that about 3 spoonfuls of that apple juice [honey-thick consistency -CHA] and then a spoonful or so of water. I thought that was real progress.
An another issue you may want to inquire about is that they found a big difference in blood pressure sitting up and lying down. I believe they were going to give her medicine for that.
Finally, however, it seemed to me that mom still has (or has wound up with) poor short term memory. For example asking where she is, telling me she does not have the right eye glasses, saying today she was married 70 years, that this year is 1998, etc.
So I'll see you tomorrow. (Just spoke to Rex and agreed to charge up the iPod and take the cable for connecting to the MacBook Air)

...........................

On Mar 14, 2013, at 7:07 PM, ROSEMARY wrote:

Oh my,
poor mommy with regard to her memory loss. I believe perhaps it becomes more apparent when she is fatigued after a lot of activity.
Yes, I will be at the hospital before noon. Hopefully. The only thing that would delay me would be some massive traffic tie up. I plan to leave the house here at 9:30, which is just the tip of the end of the rush hour here, so I will be there as soon as possible.
From everything I have read, this sleepiness is all pretty much par for the course for now.
I am interested to find out what new medicine regimen she will be on.
I hope you have a restful evening daddy. spend a little more time relaxing and reading something for enjoyment and go to bed early.
You need the sleep.
See you tomorrow
Love, Rosemary

...........................

From: JOYCE
Date: March 14, 2013, 9:57:45 PM EDT
To: GRANDPA, ROSEMARY
Subject: RE: Update  at end of today (Thu, March 14).

Hi Dad and rosemary,
Well,  I do hope that you can get a hold of me when you have this meeting. Rosemary, call me at either one of the numbers I gave to you.
Alot of these practicioners are consultants nowadays, (and it sounds like it based onher group name) , but its good because this topic is  part of her specialty  area.  Anyway, I think you could learn alot.  The tube in nose is the one that could become misplaced for some reason, and end up in the lungs instead of the stomach. Thats why they do the XRay before actually using it- to confirm placement. The other tube would be placed inher stomach- and come out of her tummy. You wouldn't have food end up in the lungs, but it requires a little procedure to make a hole t o place the tube thru- therefore, an opending that would always require a dressing (bandage) of some type.  That dressing would have to be changed regularly and the open hole is potential site for infection, so has to be taken care of a bit.  This is a common procedure tho, and nothing to be scared about.   Anyway, lets see what she says!
  Well, I guess with her short term memory problem, she may be lucky in some ways, and not in others. I mean it may bug that she has to keep asking about certain things or whatever, but at least she doesn't remember that she asked before and have to feel bad about it! Also, maybe she doesn't really even remember things that are unpleasent (getting the nose tube, or someting else) and have to ponder on them....
Have a good day tomorrow.                                 love joyce

Tuesday March 12

My mom and dad visited today.  Just a few things to report:

• Another more quiet day, but Grandma is doing well.  She was sleepy at times, but she was alert and knew what was going on, happy, etc.
• My dad put some music on her laptop for her to listen to, and she was SO happy to listen to that, even moving her arm to the music and "conducting" a little!  I think this was some organ music she received on CD in the mail last Monday from a friend in the Netherlands.  Perfect timing!  Music is fantastic for recovery from all sorts of brain issues/trauma.
• Mom reports a nice woman from the rehab center came to visit, and talked about Grandma being transferred there soon.  Not sure when exactly that will be yet.
• They've found that Tylenol helps a lot for Grandma's restless legs, so that should give her some relief.  If it was keeping her up at night, then this will hopefully give her some rest.
• Mom says she talked to the neurologist who said that the drowsiness is normal and will continue for weeks or months, part of the healing process.

Sunday Pictures

A few pictures from Sunday.  

The first two are mine; the last one is Grandpa's.

A church friend brought the flowers from church that morning.

 Speech and Swallowing therapist working with Grandma

Happy Sunday!