Mom is Home!!

So on Tuesday April 7, mom returned to the Health Center of Windermere (room 242). In the two weeks that followed, she progressed greatly. Danny, Melissa and family came to Orlando and were able to visit with mom. She enjoyed that immensely. After about a week, we were told mom's insurance only covers 60 days of inpatient rehab which meant Tuesday April 21 she would be coming home. At first, she freaked out that she wasn't ready to come home. Then, she focused all that energy into getting ready. She was getting physical therapy (PT) twice a day. On her best day, she was able to walk (with walker and therapist) about 150 ft in the morning session and 210 ft in the afternoon session!

Coincidentally, John and Eileen were planning a trip to Orlando arriving Monday April 20. John helped me go to the rehab to pick up mom.

The first week home was hectic to say the least. Between me trying to 'work from home', Dianne, Eileen and John coming for visits and making dinner here, nurses visiting, pt visiting and mom adjusting to being home, we were all very tired at the end of the week. We even capped Friday off with a trip to Olive Garden!

Today, mom gave me a heart attack. She tried to walk on her own, when I wasnt close enough to help! But she did it!!! This morning, she walked about 5 steps without the walker. Then, she showed off for Dianne this afternoon and walked 30 steps! This is all very good news and we are excited.

So the next steps are continued rehab and working on getting into a pattern at home. She thanks you all for your continued support, and you are welcome to visit at any time. =)

I have run out of Alaska pictures to post, but while he was here John put up my Christmas computer for me. I will get new pics posted soon.

Catching Up

So many changes since my last post.

On Monday March 16, mom was still confused and hallucinating, but the doctors told us she would be heading back to rehab the next day. When I asked the doctor about this, he said she was cleared of infection so there was no need for her to stay. Since there had been no repeat cultures done I asked how he knew... and I got the stupidest doctor answer yet! He said he knew she was infection free 'because she finished her course of antibiotics.' Here is what I wanted to say. "Oh gee thanks doc for that clear answer... and for being a miracle worker! For 6 months she has battled various infections, but under your wonderful care for 11 days she is now infection free!" Instead, I asked once again if repeat cultures could be run to verify it and he said no. He said that since she has been on antibiotics the cultures will show up negative.

So on Tuesday, they transferred her to Health Center of Windermere. This is the sister facility of the center she was in prior to the hospital, and thankfully a little closer to home. This time it was room 130 (for those playing room number bingo).

The first thing the newly aligned doctor did (and yes, once again we get another doctor) was order cultures. And guess what they found? Our old friend Pseudomonas in the urine. So they started another round of antibiotics.

Friday March 20, Mom hit a major milestone. She STOOD. They had her up in the parallel bars and she took 4 steps. Woo hoo!

The next week, she made even more progress.

Monday - Full walk across the parallel bars.

Tuesday - 2 Full walks across the parallel bars.

Wednesday - Parallel bars plus WALKER.

Thursday and Friday - more walker, but not as long a distance because her knee caught up with her.

Mom really likes the facility and the people, and is making good progress, so we are happy.

Enter the next week. Mom was still making progress, but mid week we learned she still had the Pseudomonas. So Thursday the doctor ordered a new antibiotic (sounds like mirim). Bu Friday morning, mom broke out in a rash all over. So they decided to send her back to the hospital to deal with the rash, the infection, and anything else that needed to be reviewed.

Friday April 3, we are back in Dr P Philips Hospital, room 5126. It is almost like coming full circle since this is was the first hospital she was in for the diverticulitis and where she worked. She caught up with a lot of old friends, which was nice for her. She also saw some old doctors who had some clue as to what has been going on with her for the last 6 months. She was supposed to have an appt Friday afternoon with her Gastroenterologist (GI) Dr Feuer. So now, he came to her. And they decided to do a colonoscopy. That was Sunday morning and everything went well.

Monday April 6, Mom got word that she will be heading back to rehab. Yay! But with timing and paperwork etc, it will be tomorrow. She will be heading back to Health Center of Windermere, but I don't have a room number yet. The cultures came back clean, so the plan is to continue to monitor her from rehab. She is still breaking out in rashes and hives, but the Infectious Disease doctor she not only has seen but worked with before, Dr Rodriquez, thinks the rashes are related to too much antibiotics and she clear up in time.

So tomorrow mom moves once again. We all (Dianne, Larry, mom and I) look forward to this being the last move before she comes home. Keep your fingers crossed!!

Postnote: A roadside waterfall in Alaska, and the last picture of mom from our trip.

TMI Warning!!!

Mom has been in Lucerne for a week now. She has had good days, and not so good days. I finally received all the results. Her CT scan showed nothing abnormal. Her cultures showed fungus in the urine, but there are also bacteria in her blood. The PICC line was infected and she now has Enterococcus and Staph in the blood. Because of her decreased kidney functions, they cannot give her antibiotics like they would if you or I were in her place. They give a dose of Vancomycin today, then wait a few days, and then give the next dose. Of course, as soon as I heard this all my worst fears surfaced. This is how the whole process began! But the doctor so far is not as worried as I am (or he is better at hiding it than I am). He is not calling this sepsis. He is calling this bacteremia.

So for now, we wait... We hope for good days, when she is confused but her hallucinations are not frightening... We remain thankful that her kidneys are holding on.... And we continue as much of her physical therapy as we can.

Postnote - I am running out of Alaska pics of Mom. This is from Skagway, Alaska in front of the infamous Red Onion Saloon.

Here we go again...

A lot has happened since my last post.

Shortly after Mom was admitted to Lake Bennett, she moved to room 110. Let me give you a guide to Lake Bennett. The rooms remind me of very cheap hotel rooms. There is a 3 drawer night stand in each room. Each looks like it could be about 50 years old given the condition. Her first bed had 3 hand cranks at the foot to raise the head, foot or middle. When mom moved, she requested an automated bed so that she could reposition herself. Each room also has a small cork board, a reclining chair and a decent sized closet. On Mom's first full day (in room 309), Dianne and I decorated the room with all of your cards and drawings. The next weekend, we did the same to her new room. Today, we had to take it all down again. More to come on that.

The rest of Lake Bennett is beautiful. There is a big dining hall for meals and activities. They have a very nice rehab room. There is a library with books on tape, real books, a computer and a puzzle for all to work on. Everything is so clean and well kept. The facility has three main wings, and each wing has three hallways. Each hallway is a 100 series with 10-12 rooms; the north wing is made up of rooms 101 to 310. At the focal point of these three hallways is the nurses station, and a lobby of sorts. There is a big open area with a large screen (52") TV. Mom's wing was the senior senior senior section, so the TV was always set to Turner Classic Movies (TCM). During the day, patients hang out in the area and socialize or watch TV.

Mom began receiving all kinds of therapy the Monday following admission. There was the normal physical therapy, plus speech therapy and occupational therapy. Over the almost 3 weeks of therapy she has had, she is still not walking. But this week she was able to stand for about 90 seconds. That was awesome!

Now for the flip side. (Why does it seem like there is always a flip side??) It seems like mom has had a urinary tract infection on and off for months now... probably because she has! So once again they started her on antibiotics. Tuesday night, I was not able to visit mom, but when I called she sounded fine. But apparently, at some point overnight she began having hallucinations. Now, I think some us have have already learned this, but for the rest of us... Urinary tract infections in older (and don't ask me what age makes one 'older') women can lead to hallucinations. We have been through hallucinations before so we know what to expect right?

Wednesday morning Mom called me as I was driving to work. I knew immediately that she was not right, so I called the nurses station to keep an eye on her. Dianne and Larry visited mom that afternoon. Dianne can tell you how much fun (dripping with sarcasm) that was. However, through all that mom had a very good therapy day. This is when she stood for 90 seconds. Thursday was more of the same. Once again Dianne and Larry visited. Dianne called me at about 4:30 to tell me they were leaving and give me a recap. I wasnt able to answer the phone right away. At about 4:40, the nursing supervisor called and once again I could not answer right away. Note, this was 10 minutes after Dianne and Larry left. The hospital called back at 5:05. They called to tell me that they were worried about mom's altered mental state so the doctor ordered that she go to the hospital. They would be transporting her to ORMC within the hour.

So off to the ER we went. Her blood work was not too bad (creatinine 2.6, BUN 21, white count normal). They drew blood and urine for cultures. We wont have any results for another day or two, but the urine sample prelim results indicated it was bad. So they started her on Vancomycin again. At about midnight the nurse told me to head home because she would probably be admitted and she was sleeping pretty soundly. They did a CT scan of the head, too. I have not heard the results from a medical professional, yet. Today, we learned that mom was admitted to Lucerne hospital, room 358.

So today, Dianne and I had to clear out mom's room at Lake Bennett since insurance will not pay to hold the room, and neither will I at $195 per night! It is amazing how much stuff mom accumulated in the last 3 weeks. Then we went to visit with Mom. She was already much more lucid which was very nice. The room is very very nice, especially coming from Lake Bennett. There is a little round table with straight chair, a little coffee table, a reclining chair and a TV armoire. It is very nice and reminds me of a seaside motel room. I wish the view was more like the seaside. =)

So that is where we are as of today. Hopefully we will only be in Lucerne a few days so we can get back on the rehab track as soon as possible.

Postnote - This is Mom holding up the Alaskan pipeline in Fairbanks, Alaska.

Moving Day!

Friday, February 13, 2009

Mom was moved to the Lake Bennett Health & Rehab Center at approximately 4:30 this afternoon. The good news is that is a rehab at last. The bad news is that is it further from my house (now 22 miles) and on the opposite side of town from work. Her new room number is 309.

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I spoke with her shortly before the transfer. She was apprehensive and said she had never heard of this place before. I tried to remind her that it was on her list... but she still said no. All she really wants to do is come home. I told her she could as soon as she was ready. Guess her response...? She can walk, she does it all the time, so she is ready! Hopefully this change of scenery will be good for her mental health, too.

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I am heading over there soon. I will send a phone number as soon as I have one.

.

Postnote - this pic is of Mom on the balcony of our room, looking at the Hubbard Glacier, in Alaska.

Dance Party in Pat's room

Wednesday February 11, 2009

This morning, they removed mom's traych! To celebrate, they turned on the music. Mom danced (in her bed), the doctors danced, the nurses danced, other people's visitors came in to dance. =)

And again, in the grand scheme of their fantastic communication skills, no one called me.

Diane went to visit this afternoon so she called to tell me the good news. She also told me that the case worker said Mom might move tomorrow. I can't imagine how since she has a UTI still, and her creatinine is 3.5. Also, her calcium is elevated, so they are putting her on a medicine that might make the kidneys even worse. So I can't imagine they will move her yet... but we shall see!

Postnote - the picture is from Fairbanks, Alaska.

Size 4!

January 25 through February 8

On Sunday February 1, Dianne and I had spa day with Mom. Diane cut and filed Mom's nails while I tackled her hair. The nurses got her into the special chair they use with her so that she was sitting upright. After about an hour, I was still no where with her hair, so we made the tough decision to cut it. The hair in the back of her head is now only about 1/2" to 1" long, and there is a small bald spot from her rubbing against the mattress for the last few weeks. The sides and front seem long enough to cover it for now, so the focus is to keep it from getting bad again. That day, Mom was in the chair for about 2 1/2 hours, which is fantastic for her.

This week we had exciting traych movement! On Tuesday (2/3), they capped her traych so that she is no longer breathing through it. Now, all breathing is done through her nose, yeah! Then on Friday (2/6), they reduced the size of the tube to a 4!! The next move is to take it out entirely. I don't have a time estimate on that, but we are very hopeful that it won't be too much longer.

Also this week, she started eating normal food. She is still on thickened liquids, but gets stew, meatloaf, mashed potatoes, etc. She does not have much of an appetite, so we are working on getting her to eat more each day. Once she is eating enough to cover the calories she needs each day, they can stop the tube feeding and take out the PEG tube.

As for the rehab facility, the one here in Hunter's Creek is full now and they do not believe they will have a bed anytime soon. The insurance company is all about getting Mom into rehab asap; they called me Friday to ask about a new facility in Metro West. This would be about the same distance as the current place, but with traffic it might take longer to get there. Diane was thinking about going to the Hunter's Creek admin office asking for more information and help getting Mom in. I hope to know more soon.

Postnote - this pic is of Mom on the balcony of our room, looking at the Hubbard Glacier, in Alaska.

The Sweet Taste of Food

There has been very little change over the last two weeks. Mom is still in the same room with its bare walls, with the same size traych tube, taking antibiotics for her gram D negative rods infection, and with her fist size dreadlock of hair... and she will stay there there until her traych is completely gone.

She is still confused at times. Sometimes she sees things in her room (fish in the lights, sea turtles on the ceiling, dogs under the covers). Sometimes she thinks she is home in her bedroom and she doesn't understand why I wont bring her what she wants (a fan, her purse, Todd). But her personality is there. And she has not tried to get out of bed anymore.

She has not been up to talking on the phone a lot lately. When she spoke last with Eileen, she swore she was having surgery the next day on her arm because there were growths all over it... but her left arm is more mobile now and there is less pain.

She still wants to take a shower more than anything else!!

She is still a bit too congested for them feel comfortable downsizing the traych. However, as of yesterday, she is able to eat! It is mostly pureed (sp) food and juice, but it is a very positive step! Today, Larry helped feed her puree of roast beef.

So, Dianne and I will redecorate her room as we wait for Mom to be traych free. Any suggestions, cards, etc, are welcome!

Postnote - This picture was taking as we were exiting the boat at Icy Strait Point, Alaska.

No More Monkeys Jumping on the Bed

The first half of the week of January 5 was mostly uneventful. Mom became more and more aware. However if there is one constant in the universe, it is that she wants to get herself into the bathroom.

Thursday night, we watched the Gator game together... one day I will tell her we are National Champs again! =)

Thursday night I also talked to her nurse about her hair. She asked another nurse (male, named Kim) who used to be a hairdresser to take a look. He thought it was salvageable, and they said they would start working on it the next night. Yay!

Friday, January 9
Mom's case manager called at about 9 am to actually give me some good news.

The next step in Mom's care is a rehab facility. Way back (mid October) when Mom had her day of clarity, she picked 3 rehab facilities. First - Hunters Creek Nursing and Rehabilitation Center (across the street from Karen's apartment complex and 3 miles from my house); second - Health Center of Windermere (14 miles away); third - Lake Bennett Health and Rehab Center (24 miles away). When the social worker told this to me, she said the top pick was not in mom's insurance network.

So on Friday, the news changed. It appears the second and third choices do not take traych patients, and Hunters Creek will take Mom and accept her insurance!! And then, to return to their normal poor communication... she said Mom could be transferred as early as that afternoon... What! Way to give me a heads up! She said she would call me later in the day to confirm.

At 4:00, she called back to say that it would be a few more days as Mom has developed a UTI and the antibiotics they have her on require some closer monitoring. OK.

Once again, while on the phone with her, I asked about Mom's hair. She was under the impression that it had been corrected. WRONG. But I did tell her that Gigi and Kim were planning on giving it a try, and that I appreciated that.

I was heading out of town again, so Dianne and Karen headed over to visit Mom. Mom had fun with Karen. A little while into their visit, Dianne had a coughing attack and headed out to the car. She figured Karen would be out shortly. After 30 minutes, she tried to call Karen's cell... no answer. Ten minutes more, and Karen answered, "You will never believe what she did!" Mom had Karen lower the rail, help her to a sitting position, and then attempt to stand. I stress the word attempt, because she CAN'T! So Karen was flipping out trying to figure out how to get Mom back on the bed. She couldn't walk away to get help, so she called out and got someone to come in. Poor Karen! The nurses yelled at her for what happened. She had no idea! So Dianne came back in and Mom had the cat that ate the canary grin. She still did not see anything wrong with what happened.

Sunday, January 11
Dianne and I went to visit Mom. Her personality was all there. We were laughing and joking and she was able to remember the cruise and her pneumonia. She got fuzzy around the start of the diverticulitis. Then the nurse came in to tell us how first thing this morning she found mom sitting upright with her legs caught between the rails. She was trying once again to get out of bed. We tried to make her say the words "I cannot walk yet" but she refused. It was a really good visit. We also took down all the cards and stuff in the room in preparation for moving to the new place.

At about 11:30 that night, I got another phone call from the hospital. This time it was the charge nurse. The tech went in to do vitals... and found mom sitting on the floor!! She told the nurse she was 'just getting up to get a glass of water.' Because if there is one thing you should try it is to get out of bed when you can't walk to get a glass of water that you are not allowed to drink!! The staff physician examined her and said that she did no damage and she was not complaining of any pain. I checked in again Monday afternoon and she was still doing ok with no pain.

Looking forward
At this point it will probably be mid week before she moves. The orders are already written to downsize to tube size 4, but they are waiting for her congestion to clear up a little more.

Postnote - This picture is from our Gold Mining excursion in Fairbanks, Alaska.

Regression

Tuesday, December 30
I had to work late this night (wound up being until 4 am, argh!), so I was not able to visit Mom. I started calling the hospital at about 8:30 pm trying to get an update on how she was doing and to ask the nurse to let Mom know that I couldn't make it but that I was thinking about her. Each time I called, I was told the nurse was in another room and could I call back in 20-30 minutes. By 11:30 pm, I was on my 5th call and was told the nurse was at lunch. In my oh so pleasant way, I got the nurse on the phone. Veronica had been Mom's nurse the last night or two. She is very nice, but English is not her 1st language (Spanish is). When she got on the phone she said, "Your mom is resting well now, she is calm, she has a seizure earlier, but she is ok now." A WHAT? I flew off the handle... 'Why wasn't I called? When did this happen? What is the treatment?' I think I scared her a little, because she then immediately said, "Let me get the charge nurse." The charge nurse then told me it was not a seizure, but it was "(insert medical words here) dyskinesia". They love to tell me that Mom has Parkinson's lately (ever since she told a nurse one day that she remembered the day the doctor told her she had Parkinson's... as far as I know that never happened). The charge nurse said she was in the room with the doctor when this was happening and that he did not believe it was a seizure. His plan was to watch her overnight and then do a CAT scan in the morning. I told the nurse I wanted to be called if they did a cat scan... my phone never rang, but one was done.

Wednesday, December 31, New Year's Eve
I had been planning on going out of town for the weekend and I did not know what to do. I called for an update at about noon. Mom was unresponsive. The cat scan was done but the results were not in yet.

I was so mad that I knew if I went over right away I would create a scene. If there is one thing I HATE about this hospital is their consistent lack of communication and their attitude when you try to call to get any information on the phone. If they had their way, I would be camped out in Mom's room 24/7 so that they didn't have to take time to tell me what was going on.

So I continued my prep to leave town, still unsure if I was going. I talked to Dianne, and she called the hospital, too. She was also told how they are too busy for phone calls, that the cat scan results were not in, and that we would have to be there when the doctor rounded (and who knew when that would be) in order to get the results since they don't give that information out over the phone. Dianne helped convince me that I should go as planned and that she could look out for Mom while I was gone, starting after dinner that night. So I went to Tampa, and Dianne and Larry went to visit Mom. While they were there, they ran into the doctor. He was very nice and told them that there were still no results, which he said was a good thing since it is the bad news that seems to travel fastest. He also said he was discontinuing all meds (ativan, valium, oxycodone, morphine, lexapro and protonix) that might be mind altering to see if they are causing the confusion and the dyskinesia. He then was adding a anti-psychotic (can't recall the name) to see if it continued or not.

The doctor also reminded us that Mom is still not well. If we compare her this week to last week, it can be disappointing. But if we compare her to 2 or 3 weeks ago, she has improved. I was reminded that we might take 2 steps forward and 1 step back, and that was not unexpected.

Thursday, January 1, New Year's Day
Dianne and Larry went to visit Mom again. She looked a little better, but was still unresponsive. The cat scan results were in, and they were negative. So we started the new year off with some good news.

Friday, January 2
While Dianne and Larry were with Mom, they called me. She was more responsive, if not more alert. She was squeezing Dianne's hand in answer to questions but would not talk to her or open her eyes. When they put the phone up to Mom's ear for me to talk to her though, she actually spoke! I told her to keep focusing on getting better and she said "OK". I told her that I would be there in a few days and she said "All right." This made me happy.

Saturday was more of the same, however they did have Mom up in a chair for about 4 hours! When Dianne and Larry were there, they tried to get her to talk, but she said she was afraid to. Even though the respiratory tech told her there was nothing to worry about, she was still untalkative.

Sunday, January 4
At 8:00 that morning, I got a call from the hospital. The nurse for the past 4 days or so was Malisa, and Dianne had been raving about how nice she was. She was calling to tell me how talkative and alert Mom was that morning, and how happy she was to see that! Finally I get a call to tell me news, and good news at that!, but so early on a Sunday morning. Beggars can't be choosers I guess.

I picked up Dianne as I came back into town, and we went to visit Mom together. She was more responsive. She had her eyes open a lot, but she was also very sleepy. She was still resistent to talking.

I had brought detangler with me to try to work on Mom's hair. Malisa mentioned having promised to wash Mom's hair, so we agreed to do it together. Have you seen those State Farm commercials... (picture me in the middle of a red dot standing at the head of mom's bed) I reached the point where the irresistible force met the immovable object. Malisa and I had the best of intentions of taking care of Mom's hair without cutting it... but Mom's hair would not budge. It is a giant dreadlock of chaos. Malisa and I tried for about 45 minutes, but Suave kids detangling spray was not going to cut it. Malisa called a Sally's Beauty Supply store and I will need to pick up a special product on Tuesday.

But again, I am pissed since for over a week now I have been trying to get someone there to help with this since IT IS ALL THEIR FAULT, and I get nothing! When Malisa actually saw what we were dealing with, she got mad, too. There is no excuse for letting it get like this. All I can think, is they would wash it, but not brush it. Enter over a month of sleeping on it like this, and viola, you get a mess!

So, when it is time for Mom to read this, and if I have had to cut your hair, please please please don't kill me! I really am trying!

Looking forward
Her breathing has remained fine through all of this past week. Her creatinin is still working it's way down (was 2.0 last weekend). And physical therapy will continue to work with her. She is (understandably) depressed. If you get a chance, please send a card or an email, and I will post them in her room.

Postnote - This picture is from our whale watching excursion in Juneau, Alaska.

Size 6

So you know how they say be careful what you wish for...

Christmas Day
So on Christmas Day, we headed over to the hospital. Nicole couldn't come in, so Chris waited with her in the family room while lil Christopher and I went to see Mom first. Mom was back to asking to get out of bed. Christopher and I tried to distract her, but she would not budge. This time, she wanted to take a shower. After about 10 minutes of us arguing, Mom said to me, "If you are not going to help, then you should just leave." She kicked me out!! On Christmas Day!! So I switched with Chris and he had a nice visit.

Friday, December 26
Chris picked up Victoria this morning, and we all headed over to the hospital. Physical therapy had already been in for the day, but she came back to give us some good news. Earlier that day, Mom told her about kicking me out the day before. Mom had said, "I feel bad about it, but I had to tell her how it was." First impression - YAY, she accurately remembered the day before! Then the therapist told me that Mom was able to sit on the side of the bed and hold herself up for about 15 minutes. Mom wanted to try to stand, so the therapist got the Med Surg shoes and socks and they tried. It was a no-go, but at least she was able to try! Mom is still insistent on taking a shower, so the therapist is going to try to get her into a special shower next week. Since Mom had such a great therapy day, she was wiped out, so it was another short visit.

It was either this day, or the day before, that the tech taking care of Mom told me her hair was so matted that she thought it would need to be cut out. Excuse me??

Saturday, December 27
Chris and the kids started for home early that morning. Dianne and I went to visit Mom that afternoon. When we got there, Mom was asleep. The nurse told us she was anxious that morning, so they gave her Ativan and Morphine. This was not my favorite news of the week. She was confused, and she was sleepy. Interesting things Mom said today:
"I think our squirrel is missing."
"The doctor told me I should be walking more each day."
"Wasn't I just holding the baby?"
"I think I am going to rename the baby."

She did however finally let me cut her nails (or claws as the nurses called them). For the last few days, her left arm had been hurting her, so she was not able to move it as much so this was fun (insert sarcastic facial expression here).

Sunday, December 28
Good news, the first thing I noticed when I entered the room was that the traych tube was green (had been white since day one). I checked, and it was size 6. Let the tube reduction begin! Also, the nurse corrected me - they would not go to size 2. We go size 6, size 4, then none!

However, Mom was not happy. Her arm was really hurting. If you were in the room with her, you would think her arm was on fire. Enter more pain medicine. Enter more confusion. Shortly after they gave her the meds, she was asleep.

Monday, December 29
Once again, her arm was really hurting. They had done a doppler to confirm there were no clots, and I believe they also x-rayed it. The doctor decided to give her a muscle relaxant in addition to pain meds. When I walked into the room, she would not talk to me at first. She was soooo mad because "I have been trying to call everyone today, and no one answers!" I tried to tell her that she does not have a phone, so she could not have called, but she didn't believe me. So I asked her who she wanted to call. At first she said Grandma, but then she decided she was in too much pain. Enter more pain medicine, and once again she fell asleep.

I spoke with the case manager. I told her about the hair conversation last week, and she agreed that they need to fix it, sans cutting. We discussed Mom's arm and she said therapy will be working on it with her. She also confirmed that Mom will be with them another 2 weeks or so, most likely until the tube is out all together.

Postnote - this picture is from our trip to Hoonah, Alaska, after a native american show.

My Christmas Wish

On Saturday, December 20, I got my Christmas wish! I went to visit Mom, and she knew who I was! She was awake, still confused and she was frustrated. I was able to use her traych attachment to let her talk. And she talked!! All she wanted to do was get out of bed to use the bathroom. No matter what I told her, she insisted that she had to get out of bed. No matter how I tried to change the subject, she wouldn't let it go. I posted some more cards, went over our "plan" again, and tried to keep her in bed. According to Mom, it was 2009, she had eye surgery in May, and that was how she wound up where she was. I didn't argue.

I called Cathy, and she was surprised to hear Mom's voice! Mom told Cathy how mean I was - yelling at her and "sitting on her" to keep her in bed. Cathy then found Grace for me. She was on her way to visit Grandma, so Mom was able to talk to both of them! By that time, she was falling asleep on the phone, so I left before she was able to talk to anyone else. Later that day, Dianne and Larry went for a visit, too. They were thrilled with how Mom was doing too, and they helped Mom to call Eileen. All in all, a good day!

On Sunday, Mom had some extra visitors. Chris, Christopher, Victoria and Ann joined me for a visit. Mom was happy to see them. Once again, she insisted on getting out of bed. Once again, she complained about how mean I was. I'll take it! =) With Chris's help, she picked on Christopher and Victoria.

On Wednesday, Christmas Eve, we were able to take Christopher and Nicole to visit Mom(Victoria went to Jacksonville to visit her other grandparents). I should mention that kids under 12 are not allowed. So for this week, we aged Christopher 2 years, and begged to get Nicole in. This time, Mom was good about not asking to get out of bed, but then again, she was tired from the moment we got there. They had her sitting on the edge of the bed for about 15 minutes earlier that day!! Go Mom !!! It was a short visit, but very sweet.

What's next?
Mom has been off the ventilator for 11 days now, so they took the machine out of the room! The next step is to start reducing the size of the traych tube. However, Mom is still coughing up a lot of secretions, so they tell me they will need to wait to start that process, and that it takes several weeks. For those of you that like details, she has a size 8 tube now. They will reduce it to size 6, wait for the hole to heal around it, change to size 4, wait, change to size 2, wait, and then remove the tube altogether and cover with a bandage until it heals completely. During this time, she will continue physical and speech therapy. However, all this will probably happen at the next facility in line... which I have to pick. Looks like I need to do my homework! Thanksfully, Mom narrowed it down for me to 2 places, but both are far away. I think I know what I am doing on Monday!

Merry Christmas to us, every one!

Postnote - this picture is from our first formal night on board the Radiance of the Seas, somewhere off the coast of Alaska.

96 Hours... Off the Vent!!

As of Monday, December 15 at 8:30 am, Mom has been off the ventilator! YAY!!

On Monday December 15, I spoke to Mom's Repseratory Tech (named Christopher, how appropriate). He said she was doing well, and they took her off the ventilator at about 8:30 that morning. He also said that he had spoken with the doctor that morning and they were going to keep mom off the machine not only all day, but all night too, for as long as she could handle.

On Tuesday December 15, at 7:30 in the morning, my cell phone rang... and my heart fell. They never call. And they never call that early. The nurse, said "Your mom is stable now"... (Oh crap, when wasn't she stable?) "so we moved her to room 111." My brain said "Huh? OH, ok, you mean for the last 3 weeks she wasn't always stable so she was in ICU, but now she has been stable for a while and so you can move her... OK, I get it. Don't do that again!" I said, THANKS! The nurse also told me she was now off the machine for 24 hours! YAY!

Wednesday and Thursday continued the trend. As of Friday morning, she is still off the machine! She is awake-ish. She still does not know where she is, but I am still being told this is normal. In general, she has her eyes closd, but this is not due to sedation, and when people walk in, she opens her eyes. She is not always as cooperative when nurses and doctors ask her questions.

So keep sending your good thoughts and prayers! They are working!

Postnote - the picture is from our trip to Hoonah, Alaska. I figured since mom is being precocious, this was a good picture!

Select Specialty Hospital

Select Specialty Hospital
On Tuesday, November 18, Mom transferred into Select (ICU bed 4 for those of you keeping track). I was told the transport would be at 7:15, so when I left work I went directly to the new place. I got there at 8:10, and she was not there yet. They told me to wait in the family room. There I bumped into an old friend - a 6 year old girl that was often in the ORMC waiting room. Mom arrived about 10 minutes later, and it took about 45 mins for them to settle her in the room. When I asked the paramedic how she did in transit, he said 'Great!'.

I have to say, I was not overly impressed with my first glance at this new hospital. First, the ratio of nurses to patients in ICU is 1:3 as opposed to ORMC where it was 1:2. When I got in the room, she was breathing hard, coughing a lot and her heart rate was up. The new ventilator tubes were not on the support hanger yet, so they were pulling down on the collar (i.e her neck!). When I asked to get someone to suction her out, it took nearly 25 mins and the nurse said she wasn't able to do it herself. However, once resperatory came in, they were fabulous. They took care of all the ventilator stuff, sectioned her, also noticed that the chest catheter suction had not been turned back on, so they fixed that, too. Mom calmed down after that as was able to rest. The next day, I spoke to her case worker, Marcia (Mar-see'-a) to advise of my displeasure (don't worry, I as nice-ish).

The next day, Mom's labs came back and her Creatinine was 1.6 (woo hoo!). Other than that, it was a non event day. I met her new infectious disease doctor, Dr Maria Rodriguez, and her new hospitalist, Dr Ramone. Both of them worked with Mom, and both want her to get well! Slowly they were replacing everything she came in with to be their own equipment. This night, it would be the NG tube. They had taken out what was there, and were trying to get a new tube down. This was not going very well. The nurse then asked Mom is she wanted the smaller tube (which she called something like 'dobhoff'), and Mom said yes. Over the next 10 days, this tube would get clogged at least 5 times and would need to be replaced.

On Thursday night, I had a fight with the charge nurse over what HIPAA Privacy means. He said that I could not get copies of the forms they asked me to sign, because I was not Power of Attorney (POA). He made me cry... it was just the last straw on a long day, week, month, etc and I thought the only safe place from the LOA question qould be the hospital! I told him as proxy, I didn't need LOA. Then he said he had no proof I was proxy. So let me see if I understand this logic... you want me to sign on her behalf to admit her and allow procedures, but I'm not authorized to know about her condition or to have copies of the documents I sign... ARGH! Once again, the next day I called Marcia.

On Thursday night / Friday, Mom spiked a fever. They ran cultures, and can you guess what they grew? Gram D Negative Rods! This time, it was Pseudomonas; they used the word septic again. Dr Rodriguez started her on some heavy duty antibiotics.

On Friday, they replace the central line in her neck with a PICC line in her right arm.

There was no progress of any kind over the weekend because a) its a weekend and b) she had an infection.

November 24 through November 30
On Monday, Grace happened to call the hospital to see how Mom was doing. Apparently, the answer was 'not so well.' Early in the morning, her BP dropped to something like 45/20 and her kidney function had stopped. Dianne, Larry and I went to the hospital. Once again, she was all bloated, but not quite to Michelin-man proportions. They had her BP up to about 90/45. When we touched her, she would pull away. Dr Rodriguez was there and explained to us that she expected this. Since Mom's kidneys had not fully healed, the rough antibiotics she was using on the Pseudomonas were causing this trouble. She reminded us that even though Mom's fever had been gone for days, she was still septic. They added medicines to keep her BP up, flooded her with fluids and changed some of the antibiotics. Before we left at about 6:30, the nurse gave us hope that Mom's urine output was coming back. From 6:30 am - roughly 5 pm, she put out 50 CCs. from 5 - 6:30 pm, she had about that amount. "Adequate" is 30 CCs per hour. We were hopeful as we left.

On Tuesday she was "critical but stable". Her output had normalized again to about 100 CCs per hour. Her Creatinine was 2.8. Good news, they removed her chest catheter this day.

On Wednesday morning, her BP dropped again, but not as low. They used medicine to get it back up. No labs were sent that morning. This is when I learned that they only do labs as needed instead of daily, and apparently they felt every other day was sufficient, and not everything was reported.

Thanksgiving day. Mom was doing well, but lethergic.

Friday, more lethargy. Nurses were starting to ask if she was on antidepressants. She had been prior to this point, so I said yes, but when they looked they found she was not. She was on Lexapro at home. After ICU at ORMC, they changed it to Seroquel. Apparently, this has a side effect of lowering BP so when her BP dropped, they stopped it and did not add something else. The nurse (Brady, love him!) asked and get the Lexapro restarted.

Over the weekend, I think she was very confused. On Saturday, they had her off the ventilator for 12 hours! On Sunday, she was wrecked! They had to sedate her to keep her breath rate below 30. She was out the whole time I was there. Her Creatinine was up to 3.8. They would not try to take her off the ventilator again until mid next week.

December 1 through December 7
Dr Rodriguez's group works one month rotations per hospital. As of 12/01, she moved to to Dr P Philips (where Mom works) and her partner became Mom's infectious disease doctor. I hope not to still have Mom at this place when 1/1 rolls around!

This week was really bad for me at work, and as a consequence I was only able to visit Mom on Tuesday night and she just slept the whole time. As I called through the week, I was told there was "no change". I also learned Thursday that she was off antidepressants again. And she had spent only short periods of time off the ventilator. [Note: the machine was only providing pressure support at this time. She is breathing all on her own, but the machine helps increase the amount of air she takes in.]

They changed out the small NG tube for the larger one this week, and put in an order for a percutaneous endoscopic gastrostomy (PEG) tube, which goes directly through the belly into the stomach, for the next week.

By Friday, I was very concerned, and I was having trouble getting a doctor to call me. I called Marcia (I think she dreads my calls, I don't know why) and we had a good call. Later that day, it was practically repeated with Dr Nelson (Dr Ramone had a death in the family, so all week it had been this other doctor from his group).

Bottom Line -> The 2 weeks of antibiotics had ended, so now we could focus on moving forward instead of standing still. This includes physical therapy, ventilator weaning, etc.

1. I told them that in my opinion, Mom was being sedated too much. When she would wake up, she would get 'anxious', which meant moving about a lot, so they would sedate her. I felt she needed to be awake and calm in order for her condition to improve. Dr Nelson agreed and ordered pill instead of IV Ativan so that it would be a more steady dose. He also ordered a stimulant (one of these days I will write down the name).
2. I also was worried about having the same PICC line in for two weeks, since that is what I was led to believe caused this snowball from hell! Dr Nelson advised that in general, a PICC line can stay in the same place for months. The concern is 'what is being given through the PICC line'. In the original case, it was the TPN (IV nutrition) that led to the sepsis. At this time, they were not planning on moving the line.
3. I felt she needed to be on antidepressants. Dr Nelson started back the Lexapro.
4. I wanted physical therapy to resume as her arms and legs were all stiff. Marcia confirmed it would begin on Monday.

On Saturday and Sunday, she was more awake, but not very responsive. I still think she is confused. Saturday, I got no reaction at all when I walked in. The nurse said she would respond sometimes, but when she was done she would just close her eyes. Gee, Mom being a brat?? =) So I put up some posters, cards and ornaments that I had brought with me and just kept talking to her. When the nurse came in an hour or so later, she said to Mom something like 'you're not even listening to your daughter?' Mom turned her head and looked at her as if to say 'my who?' On Sunday, she shut down completely and would not even look at me. While I have to admit that this hurt a little, I was ok with it because they gave me what I asked for. She was awake and calm.


December 8 through December 12
On Monday night, I brought more cards and a Christmas tree. I talked to her but did not ask if she knew me. She had spent 5 awake hours off the ventilator. All was well.

On Tuesday night, she was making a weird gargling noise. She had spent 5 awake hours off the ventilator again so that was good. She was trying to talk, but I could only hear one out out a few words. The respiratory tech, Ray, decided to try the attachment that helps patients talk. I got to hear my mommy for the first time in 2 months! And she said...

• Pat - Do you have my tonsils in a jar?
• Christine - (confused) Do you want your tonsils in a jar?
• Pat - No, I was just asking.
• Christine - Do you remember your surgery?
• Pat - Yes.
• Christine - Do you remember when your surgery was?
• Pat - April.
• Christine - Do you remember what year?
• Pat - (glassy eyed) I don't want to answer any more questions.

In my opinion, she was stuck at somepoint in her childhood when she had her tonsils removed. We talked a little while longer. I told her where she was and why (but not the year or who I was). I told her the ventilator was just helping, not doing it all, and she said "thank you, that is good to know." It was a very good night, at least for me.

On Wednesday, she went 12 hours off the ventilator! When I got there, she was tuckered out. I was nervous that maybe that was too much given the last experiment like that. The respiratory tech that night was Lynn, who also worked with Mom before. I told her about the last 12 hour day, and she said there were things she could do that night to help Mom rest so that she would be ok the next day, mainly to raise the pressure support to get her lungs a rest. I let her sleep.

On Thursday, Mom did 5 hours off, a break, and then 4 hours off. This was real progress! I was happy. Creatinine 3.0. Her blood urea nitrogen BUN climbing slightly (34 day before to 35 today), which is something else we watch with the kidneys since we want it to be 8-20. Her potassium has been fine (3.5 - 4.2) the whole time at this hospital.

On Friday, she only did 5 hours off the ventilator, but that was because of issues with other patients, not with her.

Looking forward
I can't believe I actually caught up to present. If all goes well, Mom will be in this hospital another 2 -3 weeks. The doctors told me once that they thought she would be off the machine completely by the end of next week. It is looking possible (knock on all things wooden!!) as long as there are no more setbacks. Once off the machine, they gradually reduce the size of the tube size 8 today) until the hole is covered with a band-aid and closes up. After this place, she will need a rehab facility for another 4 weeks or so to get her walking, talking, lifting, etc again. I estimate she will be home early January. Like Grandma, this means she will not be home for Christmas. Good news, Chris was able to get some leave approved and should be heading down here for Christmas week, maybe even with some of the kids. That will be nice.

Postnote - the picture is from our trip to Ketchikan, Alaska. Mom's first off boat use of the scooter.

Out of ICU - the Awakening

November 11, 2008 through November 18
The plan was for Mom to be in the step down ICU for a few days, and then transfer to Select Specialty Hospital on Friday to ween off the traych.

We caught up with some old friends during this week. The nurses and techs in both the ICU and step down ICU at ORMC are phenomenal! We could not ask for better care or better people. The nurse for her first two nights back in the unit was Angela. Angela was also the nurse she had her first three nights in ORMC. There was a tech named Tanya who also remembered and liked Mom. They took very good care of her.

Wednesday and Thursday were pretty much more of the same - critical but stable. Thursday night, Mom spiked a fever of about 102. That night, the doctors just ordered Tylenol to fight the fever.

Friday morning, when her fever still had not broken, the doctors decided to keep Mom at ORMC a few days longer while they ran some more cultures to figure out what was causing the fever. Concurrently, the surgeons were starting to worry that her colostomy was starting to scar closed, so they wanted to watch her, too. By Friday night, her fever came down and she looked more comfortable.

Saturday was more of the same. The cultures came back as growing Gram D Negative Rods. Her GCS rating was about a 7 each day this week.

The Awakening
Sunday November 16th. A glorious day. Mom woke up.

Grace called for her morning report from the nurses. The nurse happened to be in the room and said Mom was doing well, that she seemed to be responding to commands and did Grace want to say hello. The answer was a resounding "Yes!". So the nurse put the phone next to Mom's ear and Grace started talking. The next thing Grace heard was "Don't cry honey." Mom was responding to Grace's voice! Grace called me, and I went to see for myself. I think this was the most joyous ride to the hospital for me.

The nurses never told me what her GCS score was that day, but I would put it at 13-14. When I arrived, she started crying. Any time I mentioned family, or that we were happy she was awake, she started crying. After a little while, when she was more calm, I started making calls so everyone could say hello. She was able to hear from Chris, Victoria, Christopher, Nicole, Cathy, Grace, Grandma, Dianne, Larry and Ann. She was happy and yet she cried a lot that day.

When I talked to the doctors, Infectious Disease was not overly worried about the infection and Colo-rectal said they would probably keep her a week to watch the ostomy. This was at about 4:00. At about 7:30, the night nurse came in to tell me I needed me to put on gown and gloves since she was now considered in isolation again. The culture results came back with Stenotrophomonas Maltophilia, which is somewhat common with patients on ventilators.

I should mention that some doctors thought she had cellulitis (a skin infection) through her abdomen and legs. Others were calling it red man syndrome which is a side effect of the Vancomycin. This infection meant more Vanco.

I wound up working late on Monday and was unable to visit. The nurses said her day was about the same as Sunday. She was awake and responding to commands. Her temperature was still down. Overall, it was another good day.

On Tuesday, I received a call from the hospital at about 3:00. Mom was going to be moved to Select at 7:15 that night. The ORMC chapter of Mom's journey came to an end.

Postnote - the picture is from our trip to Mimi's Cafe with the kids while they were visiting in July.