Wednesday and Thursday Update

July 30 & 31
by Karen and Daniel

We have encountered a very tired Doreen for the last two days. It seems that she has her days and nights switched right now - she is awake at night and then needs to sleep most of the day. This makes it difficult to meet the goals she is trying to reach of eating and regaining strength and skills through therapy. We are concerned about the use of medications to try to address this problem. We have asked that they consider taking her off of the stimulant and sleep aids to see if she can straighten this out on her own. We will see if our request is heeded by the physician.

On Wednesday, she was able to wake up enough to participate in physical, occupational and speech therapy sessions, but at reduced levels from the previous two days. On Thursday, however, she could barely stay awake enough to sit on the side of the bed, to move to a chair and to "ride" the bike pedals during physical therapy late morning. The speech therapist arrived around 2:00 for his session, but we couldn't get Mom/G'ma to wake up at all. We could tell that she was trying to rouse herself, but that she couldn't break through the fog of sleep. Luckily, the occupational therapist was not scheduled for today, because we feel confident that he would not have been successful in his efforts either.

The good news is that she ate better, especially on Thursday. The hospital's CEO has taken a personal interest in helping Mom/G'ma eat. She wants to do everything she can to help Mom/G'ma avoid the feeding tube - that decision will be made next Tuesday. Therefore, she came to Mom/G'ma's room for both lunch and supper on Wednesday to feed her herself. She got Mom/G'ma to eat about 8 bites at lunch and then 10-12 bites at supper. This also gave her the opportunity to talk to Mom/G'ma about what foods sound good to her and to try to learn what will help her eat more. Mom/G'ma told her that the food served at meals is too heavy. She would like something lighter to help her begin to eat again. By suppertime on Thursday, the CEO had arranged for Mom/G'ma to have a fruit plate with sliced apples, bananas, mandarin oranges, pineapple, plums and cottage cheese. When Mom/G'ma saw this, she smiled and she ate about 20-25% of her meal! We feel very lucky to have so much care and concern shown by the staff of Progressive - from the cusodial and secretarial staff, to the nurses and therapists, and even the top administrators.

Visitors always seem to help Mom/G'ma perk up. She opened her eyes and smiled to greet Katy McFadden on Wednesday afternoon. On Thursday, she became more interactive and alert when her grandson Parker showed up at the hospital unexpectedly. She also perks up for the "visits" she has through the continued flow of cards and greetings sent by all of you. These contacts continue to be the best way to help Mom/G'ma remember why she needs to work hard throughout this recovery period -- there are so many people who love her and need her in their lives. Thanks for keeping those encouraging thoughts coming our way! (It is also EXTREMELY helpful for Dad! He feels very blessed and humbled to have the support and prayers of so many loving friends and family members.)

Monday and Tuesday Update

July 28 and 29
By Linda and Karen

Monday morning we discovered no nasal-gastric tube in Mom's nose for feeding when we arrived. She had taken it out sometime over the night hours and since no nutrition had ever been started through it, they decided not to reinsert it. The nausea seemed to have diminished and she was more alert on the new medications so the doctor decided to go back to liquid IV nutrition with some renewed effort to eat more regular meals by mouth. He also precscribed a medication to stimulate her appetite. We are still hoping to avoid the more permanent feeding tube, so they are trying many different strategies before jumping to that treatment option.

(Note--Unfortunately, the nutritional IV was not actually started until Tuesday morning and Mom still ate merely bites of food on Monday. That means by Tuesday morning she had spent four entire days with barely any nutritional intake! She is one pretty tired and weak wife/momma/grandma.)

During the day Monday, three new therapists made assessments of Mom's condition and began to create plans for her therapeutic needs. She will participate in physical, occupational, and speech therapy each day. She will meet individually with each therapist one time daily for anywhere from 30 minutes to an hour. The schedule will be adapted to her each day according to her energy and progress toward goals.

Highlights of the assessment and therapeutic process on Monday and Tuesday included Mom walking using the parallel bars for support, "pedaling" a crank-wheel bike kind of thing with her feet and then with both the left and right hands, and answering a wide assortment of questions with a mixture of frankness and dry wit. For example, the interview with the speech therapist included things like:
Speech Therapist: Doreen, what is a robin?
Doreen: A robin is a harbinger of spring. It is a kind of bird that shows the changing of seasons. It has a red, no, a rust-red breast and the rest of it is brown.
ST: What is an apple?
Doreen: It is a fruit that grows on trees. It can have a variety of skin colors - red, yellow, green. It is good for making applesauce. And it's also good with peanut butter on it for a snack.
(Remember that her speech is slow and deliberate, she pauses before answering, she often has her eyes closed, and some words are not clearly nor distinctly spoken.)

--A little later in the discussion...
ST: Imagine you are at a restaurant and after eating, you realize you have no money or credit cards. What would you do?
Doreen: I would ask my husband to pay with his credit card or money from his wallet.
ST: What if your husband wasn't with you?
Doreen: I would ask them if they would accept my credit card number and information verbally, because I know it by heart. (She then proceded to correctly tell us her 16-digit credit card number and expiration date then added the security code on the back!)

She seemed more tired on Tuesday than on Monday, but we were not alarmed by this. She had just begun therapy again with new therapists in a new environment, and she had received no nutrition to speak of for four days. We know that would make anyone tired!

The adjustment to this new hospital is now getting more settled and Mom can begin to wear her own clothes, travel to the therapy room in a wheelchair, use the bedside commode, and the staff are encouraging her to do more things for herself. She was able to interact with Becky and David Waas when they visited this afternoon and they noted how much more she looked like herself than when they saw her about a week ago.

We end the day on Tuesday feeling good about the hospital and its staff. It is clear that Mom's medical AND rehabilitative needs will be addressed.

Weekend Update

July 26 & 27
by Karen

This weekend has been one filled with waiting. The weekend staff at Progressive continued to get to know Mom. They tried several different medications and other tactics for reducing her nausea and increasing her tolerance for food. It was especially successful on Sunday - there were no episodes of vomiting. They also were letting her rest - no therapies. They did get her up to sit in a chair several times on Sunday just to keep her moving and minimally active. However, because she has had no nutrition since the IV feeding was discontinued Friday morning, she is losing some strength and energy and has enjoyed the opportunity to rest.

On Sunday they put in a nasal-gastric tube. They will begin to feed Mom through that for awhile - hoping to abandon the IV feeding altogether. If it works sufficiently, they may be able to avoid a more permanent feeding tube, but right now that is a distinct possibility. That decision should be made sometime this coming week.

Linda returned to Indiana on Sunday, bringing Karen's older son (Daniel) along. He spent the last week at Camp Emmaus, but will stay in Indiana to be with his grandparents for the next week. He will return to North Manchester in August to begin college at Manchester. (Cameron left for Camp Mack for this week.) Mom really perked up when Linda and Daniel arrived. She has been quite alert the last several days and has held extensive conversations with Karen about relevant and timely topics. It's great to see the Doreen we know and love begin to reemerge in a more significant way than we have seen for quite awhile.

We look forward to Monday's visits from the speech, occupational and physical therapists. Once the entire team has had a chance to meet Mom and assess her needs, they will create a plan for her stay at Progressive. We will be glad to really get started on moving forward again.

Thursday and Friday Update

July 24 & 25
by Karen

These two days have continued the roller coaster loop-d-loops. On Thursday morning we learned that the rehab team had determined that Mom needed to move to an acute care center. They had a hard time making the decision, but felt that her medical needs should receive top priority at this time. They told us that they hope she will return to the rehab hospital once the medical problems have stabilized - in a few weeks - to continue the progress she has been making. However, we would rather see her go into Timbercrest as the next step, if at all possible, so she and Dad are at the same place and to eliminate the drive from North Manchester to Fort Wayne.

Mom continued to complete 3 hours of therapy on Thursday, and those sessions continued to be successful (other than the vomiting episode during occupational therapy this morning). She walked 20 feet again today with the walker and the PT. The therapist remarked that Mom was relying less on her for balance and support - another bit of progress.

We took Mom to her check up with Dr. Kachmann (the neurosurgeon) Thursday afternoon. He was pleased with what he saw in her CT scan from Wednesday. He saw evidence that the shunt is working correctly and found nothing to concern him regarding her healing from the surgeries. This was good news. We were hoping to get some advice from him about her future treatment, but he clearly does not enter into that part of his patients' care.

Friday was move day. Mom was transported from the Rehab Hospital to Progressive Hospital of Fort Wayne at about 9:30 this morning. She rode in a wheelchair-accessible van. She seemed to tolerate the move well, until we transferred into her bed in her new room. At that time, she had a gagging incident. (Not such a great way to start her stay in a new facility.)

Once we were "settled" into the new building, not much happened today - no therapy or other sessions. Instead, we filled out lots of paperwork and retold the story again and again of Mom's journey since May 29. It was a difficult day for Dad and me. We had the distinct feeling that we were moving backwards instead of forwards. She is back in a hospital gown. No one was encouraging her to do things for herself. She was allowed to use the bedpan, rather than getting up to a bedside commode or to the bathroom. No therapists were encouraging her to eat or walk or use her vision, etc. A new doctor with many questions and no history with Mom and her needs. After two weeks of the rehabilitation focus, this felt odd to us. However, it seemed that it was a bit of a reprieve for Mom, at least for today. She showed relief at the opportunity to not work hard. That's understandable!

Mom welcomed the visits from Robin and Jeanette Lahman and Darlene and Gordon Bucher today. They all remarked that she was more alert and interactive today than they had seen her before, even a few days ago. We agree that she has been awake more fully and more often over the last few days. This is probably a result of the medications they are giving her, which also make it hard for her to sleep at night. Therefore, the doctor at Progressive is going to try a different medication to attempt to correct for this issue.

The address for sending Mom cards is now:

Doreen Myers
c/o Progressive Hospital of Fort Wayne
2626 Fairfield Ave.
Fort Wayne, IN 46807

For those of you coming to visit from N. Manchester, here are driving directions:

As you enter Fort Wayne from Rte. 24, go past the Lutheran Medical complex to the next stoplight. Turn right on Engle. You will need to follow Engle for 5 miles or so until you come to a "T" at Bluffton. Turn left onto Bluffton and follow it around a park to Broadway - turn right. Get into the left lane immediately so you can turn left onto Rudisill. Go to the third light and turn left onto Fairfield. Progressive Hospital is about half a mile farther, on the corner of Fairfield and Pontiac. It is on the lefthand side of the street. Turn in the driveway past the hospital and drive around to the west side of the building to park and then enter through the main doors. A receptionist will greet you at the front desk, ask you to sign in on a visitor's log and give you visitors'tags. Mom is in room 216.

Wednesday Update

July 23
By Karen

(photo is Cameron and Karen at Universal Studies, Florida, this spring)

WOW! The roller coaster ride that we are on has reached a section of loop-d-loops! Mom had a terrific day today. She went to Lutheran Hospital for a CT Scan this morning; therefore, she was not in her room when Dad, Cameron and I arrived at about 10:00. When the nurse wheeled her in, Mom’s eyes were wide open and she was quite alert. This was a very welcome surprise for us. She greeted us all right away and began to ask questions about the day and to tell us about her excursion to the hospital. We discovered that they have discontinued the Valium and have begun to give her Provigil – a medication that will help stimulate her and encourage alertness. So far, it’s working!

Mom had a great session with the occupational therapist soon after she returned. This was exciting to watch, because the therapist conducted the same activity today as on the first day – matching the mosaic tiles to patterns on a card; however, this time she had the help of Cameron, Mom’s 11-year-old grandson. She began with the same pattern that she had given to Mom on the day of admission to the rehab hospital (red, green, red square tiles in a horizontal row to form a line). If you remember, Mom had seen a triple image of that pattern – a 3x3 square rather than a single line. This time Mom replicated the pattern easily. What a relief! This shows that her eyesight is improving. The therapist then moved on to more complicated patterns. With Cameron’s encouragement, she completed 3 more. As the patterns became more difficult, it took more energy and effort, but she kept with the task and showed the highest level of motivation for this type of task that we have seen so far.

Lunch consisted of a bite of pear that stimulated the gagging to which we are growing accustomed. It was not an especially distressing experience, but her inability to take in nourishment continues to worry us all.

During her physical therapy sessions she exhibited more improvement – even when compared to yesterday’s leaps ahead. The therapist taught Mom how to propel herself forward in her wheelchair by digging her heels into the floor and “walking” along the hallway in her wheelchair. This time she was responsible for all of her own forward movement – rather than the past attempts when the therapist actually did most of the work. Mom also was responsible for navigating her way. This meant that she ended up running into the wall on her left over and over, but she learned how to get out of that situation, as well as how to avoid it. This was gratifying enough for us to see; however, after she got herself to the gym, she walked with a walker and the therapist for 30 feet! This is a 50% increase from that first walk down the hallway she took yesterday. Throughout this entire session, Mom had her eyes open again. She seemed fascinated by the sights she was taking in. Her left leg often crossed the center line to the right, but she seemed to get the hang of it about half way through.

As you can imagine, all of these activities indicating Mom’s forward progress have raised the question of whether she really needs to leave the rehab hospital for an acute care facility. The team will meet tomorrow morning to review everything and they will let us know sometime after 10:30.

Another exciting moment was when I was sharing today’s greeting cards with Mom. For the first time she could read the words printed on the cards! She struggled with the handwriting, but the printing from the cards was clear and readable for her. This, coupled with the mosaic tile exercise today, shows us that her vision problems are beginning to improve.

In anticipation of a possible move, we visited the second acute care option in Fort Wayne, Progressive Hospital. It is a completely different atmosphere than what we experienced at Select, the facility we checked out yesterday. Progressive is in a newly renovated building and began accepting patients only in March. All of the rooms are private – they are spacious and beautiful. They also can easily accommodate the needs of the family members and friends when we visit. We feel strongly that this would be the better environment for Mom and our family. We’ll see what the outcome of tomorrow’s meeting will bring. Stay tuned…

Monday & Tuesday Update

July 21 & 22
By Karen

(Note: this photo of Karen and Clay was taken in the Rockies two years ago. It seemed appropriate on a day that reached 100 degrees in Manhattan.)

The baton was passed from Linda back to Karen on Monday. Karen had returned to Kansas for a few days to attend the Friday and Saturday evening performances of the musical The Pajama Game, in which her son Daniel had the lead (Sid Sorokin). Then she brought Daniel and Cameron back with her – this time driving from Kansas to Illinois and then Indiana. She dropped Daniel at Camp Emmaus on Sunday for Senior High Youth Camp. She and Cam stayed overnight in Elgin, and then they arrived in Fort Wayne early Monday afternoon.

Monday and Tuesday have been full of ups and downs! Monday’s big occurrence was a surprise announcement late morning from the rehab hospital staff. They had determined that Mom is not meeting the criteria to remain in this facility. Her medical challenges (especially the nausea and inability to eat, the dizziness, and the lethargy) have been interfering with her ability to fully participate in the 3 required hours of therapy each day; therefore, she has not made the progress they would like to see. Mom has medical issues that they are unable to address adequately with the staff they have available at the rehab hospital. For instance, they think Mom should be seen by a GI specialist to determine if there are digestive issues causing her nausea and vomiting. They do not have the capabilities to investigate and treat GI problems at this facility. Therefore, they are recommending that we move Mom to an acute care hospital to provide her with the level of medical care she needs to build her strength. The hope is that she can then resume the level of rehab that she has been exposed to here – either by returning to the rehab hospital or at Timbercrest.

This announcement came as a surprise because of its timing. We knew that they held weekly conferences about each patient on Thursdays, but we had no idea they may make this kind of decision on a Monday. It was not especially surprising that they think her medical needs require further attention, however. We also have been feeling like we are fighting an uphill battle in order to get her to participate in so much therapy. This has been particularly exacerbated by the Valium, which does seem to help decrease the nausea, but makes her very sleepy and lethargic.

On Tuesday, Karen left North Manchester very early in order to “catch” the neurologist at the rehab hospital first thing in the morning. She was told to be here by 7:00 am if she wanted to be sure to meet with him. (He had been on vacation since the second day we arrived at rehab. Therefore, Mom’s case had been “overseen” by 4 other doctors from his practice, and none of them had communicated with us at all over those 10 days or so.) It was a good conversation. He helped to clarify what he saw as Mom’s biggest challenges and how the staff determines whether someone is making adequate progress. He made it very clear that he has Mom’s best interests in mind.

Dad and Cameron arrived about 10:00. Mom went through the day as usual. She had 2 vomiting episodes in the morning, but she was given some medication to prevent any more vomiting and she participated well in her therapy sessions throughout the day. She even walked about 20 feet with the assistance of a walker and of the physical therapist! Cameron provided great incentive for her. Having her youngest grandchild walk in front of her, encouraging her all the way reminded Mom of why it is important to work hard in the therapy sessions – she has a life outside the hospital to which she would like to return!

Dad, Karen and Cameron visited one of the two acute care facilities in Fort Wayne during the afternoon on Tuesday. We were pleased with the program and its focus; however, the facility itself is not very impressive. The rooms are very crowded and the nursing staff is forced to reside in the hallways. It was a loud atmosphere and seemed quite chaotic. We intend to visit the second facility tomorrow to consider and compare the strengths and challenges of each.

We are unsure of what the rest of the week will hold. Will we remain in the rehab hospital? Will we move to an acute care facility? Will we gain a better understanding of her medical needs? Will she make progress in her therapy sessions? Have we reached a plateau that we will not surpass? These questions are utmost on our minds and we will keep you updated as best we can. Thanks for your continued support!

Sunday Update

July 20
By Linda

(Oops! We goofed. Uncle Jay and Aunt Peg are NOT here in Indiana this weekend. They are coming in August. Dad and I were so eager we jumped ahead too fast. We'll be tickled to visit with them in a few weeks.)

All the photos posted of me (with Kelsey, Parker, and Lee) this week have been from some event here in North Manchester over the last couple years. Way to go, Clay! You have now established a precedent. Can you sustain it?

Attending church here in North Manchester was such a kick. We knew BILLIONS of people there this morning whom we have known sometime during our 51 years in Northern Illinois (47 of those years in Elgin). Coworkers (Dad's and mine from each of our days at the church offices), camp director, elementary school principal, junior high cafeteria cook, music director, friends' parents, kids I babysat who are now parents, neighbors, yoga classmate, and on. The hugs and supportive atmosphere gave a really pleasant start to the day.

Mom had a reduced therapy schedule today because of Sunday staffing but progress was still achieved. We experienced the "Alexander" method (I'll have to google it) of respecting the way one uses one's body. Mom ate some part of all her supper offerings---salmon, rice, green and yellow beans, peaches, apple juice and hot tea (both thickened with modied corn starch to prevent choking--I'm not kidding). Then I was feeling glum about the amount Mom eats when I calculated that growing from 15 bites of food at yesteray's meals to 18 bites today is a 20% increase. That perspective gives me a whole lot different attitude about measuring forward steps. It has been a challenge each day to find the cup half full but I guess I was not always looking at the right cup.

I leave for Elgin tomorrow as Karen returns from Kansas to spend two weeks here in North Manchester. And Judy is back in the country after her 9-day trip to India. She and Dick came for the afternoon and evening. We will all be richocheting back and forth until our full-time school responsibilties resume. Our big project now is to see about establishing a real home here for Dad while the rehabilitation and healing continue for Mom.

Saturday Update

July 19
By Linda

(I have to admit that part of my motivation for writing today is wanting to see what photo Clay finds to put with this when he posts it.)

Saturday staffing is completely different at the rehab center. Many of the nurses and therapists are unique to the weekends. Even the cafeteria is set up to feed just the patients but there is nothing really for family guests. I was concerned about being left in a holding pattern but I was pleasantly surprised how attentive and sensitive the "fill-in" staff could be. The therapy sessions were actually quite productive. Mom walked between the parallel bars 3 full lengths with the firm support of a kind of a sling around her back. She was engaged with the speech therapist and could repeat random sets of five numerals back to her after hearing each set just once. She sat on the edge of the table mat on her own for over half an hour, had her eyes fully open, and told the occupational therapist all about her children and details of each of her seven grandchildren, where they live, and what they are doing. (Who among you is at all surprised that she is most responsive when asked about her grandkids?) I am eager to see the main neurologist when he returns from vacation next week to see if we can't find something other than valium to work on her dizziness. She needs to be able to be fully engaged in her therapy process in order to gain back muscle strength. She is most alert and awake when the come around to give her the next ordered dose. That seems counterproductive, doesn't it?

Mom's brother Jay and his wife Peg come from Pennsylvania tomorrow afternoon. We are eager to spend some time together.

Friday Update

July 18
By Linda

Therapy was the focus of the day. All six scheduled hours were completed in half hour segments with Mom fully involved and alert (except toward the end of the last session---she laid her head on the shoulder of the physical therapist and just snuggled there because she was so-o-o tired)!
She ate breakfast in the cafeteria with the speech therapist and consumed half a banana and the "ïnsides" of a piece of toast.

With the occupational therapist she stacked some plastic cup things with her left hand and placed wooden pegs in a large pegboard. [The personality of Mom shone through on that one. The therapist asked her to pick up one at a time from a plastic bin and place it in a row of the board. Mom continually picked up two or three pegs at once. That is clearly the way to save motion and she was not changing her logical way to approach the task for the purpose of therapy.]

She sat in the cafeteria again for lunch.

The physical therapist had Mom both sit on a padded table and stand in front of a mirror to work on posture as well as balance.

12 bites of supper were eaten in her room as she had finally earned a rest in bed after spending almost all of the day sitting in her wheelchair. (She wondered whose wheelchair she was in and then mentioned that she would need to have an electric wheelchair for when she goes shopping. I guess I'm glad she's thinking big!

Visitors continue to help inject some pleasant diversions into Dad's days of vigilant waiting. It is hard for him to see positive changes in Mom's condition when growth comes in small increments. We are ever so grateful for the kindness and support that has been offered to him and to the rest of the family. Our community of support (seen in the array of visitors and the wall where we have taped the get-well cards) is the talk of the hospital staff. We are deeply touched.

Thursday Update

July 17
By Linda

Mom's eyes were open when we entered her room this morning and stayed alert for hours. What a nice surprise. She then sat for 3 1/4 hours in her wheelchair. Her neck and shoulder muscles are quite weak from so much time in bed so it was quite a feat. Everything is focused on getting her stronger and building more endurance.

She worked with the occupational therapist--finding her balance while sitting, handing balls back and forth with a variety of stretches, and persisting on a task.

She visited with her brothers- and sisters-in-law while sitting in her wheelchair--mostly listening but answering some questions and adding a few smiles.

She worked with a new speech therapist to retrain swallowing muscles. She got pills down again for the first time in several days (by drinking V-8 juice) and ate a dozen bites of lunch while sitting in the cafeteria.

She scooted down the hall using her feet some of the way (while the physical therapist pushed the wheelchair). Then she was able to kind of lean/stand/list between parallel bars in the gym with the physical therapist this afternoon.

After all this, she fell into an exhausted sleep by suppertime and could not have been less interested in my attempts to lure her into eating.

With all the participation in activities and the visits from his brothers, Dad feels much better today and his spirits seem renewed. He does certainly wonder what can be done to encourage Mom to eat more but we are trying to take pleasure in the accomplishments of the day. Maybe tomorrow will bring some more healing.

Wednesday Update

June 16
By Linda

Today Karen tagged me as Parent Companion and went back to Kansas for a few days. After being away from Mom and Dad for 10 days, I find a few changes. The general atmosphere in the rehab hospital is less formal and rooms are sunnier which in turn makes for an encouraging and more hopeful spirit than in the neuroscience section of the larger hospital. Mom's hair on the right side of her head has grown to about a half inch and the surgical incisions are far less apparent and are healing nicely. Her cheeks are rosier and, even though she is often cat napping, she is occasionally able to participate and engage in conversations and therapy.

Unfortunately, many of our frustrations are the same. We don't get to see the neuorologist face to face (vacation, early morning calls, etc.) so we do not get the big picture. Therapy sessions are scheduled for half an hour to accomodate Mom's limited tolerance but two therapists might schedule their visits back to back. That means she still may fall asleep of wear out very quickly during the sessions she need in order to gain more strength. The nutrition issues are still difficult. She is receiving nutrients through an IV but who in the world wants to drink thick water (I can't even imagine getting it down) and the high level of dextrose sugars is throwing off her blood sugar levels. And Dad is constantly searching for the positive side20of situations where the negative impact is easier to see. Every decision seems to bump into another---dominos bumping over other dominos.

But we are encouraged by simple things. Mom worked with the occupational therapist to figure out how to take off and put on of her own knit shirt. This is a refreshing step forward from wearing hospital gowns. After having a very rocky start to the mrning today where she did not keep her breakfast down, a new medication (Zofran?) is working now to keep her stomach settled so she ate 5 bites of supper last evening. She sang Ämazing Grace" with the speech therapist.

Dad's two brothers arrived this evening for a visit which lifted his spirits immensely. It is difficult for him to want to engage in any activity besides sitting with Mom in the hospital and the more light-hearted diversion over supper was wonderful. The three brothers told boyhood stories and razzed each other and things seemed fairly "normal" for a few hours. They will all visit in Ft. Wayne with Mom tomorrow.

We approach each day with hope. We do what we can do. We take one step at a time on this challenging journey.

Tuesday Update

July 15
By Karen

Today included both ups and downs for Doreen. As we entered the building this morning we were greeted by another rehab resident who was sitting outside reading the paper. She told us that she sat next to Mom at breakfast and that Mom was in good spirits. Next, the nurse told us that she ate a good breakfast (her whole bowl of mandarin oranges, a few bites of hot cereal, and a bite of Danish, but Mom wanted a roll with pecans). The nurse deliberately put Mom at a table with 2 women who held a conversation with each other across the table – she hoped that Mom would be stimulated by the interaction of these women. She said that this had worked and Mom had opened her eyes quite a bit to see what was going on around her.

The breakfast experience seemed to exhaust Mom. She slept through the attempts of the speech therapist to get Mom to wake up and work on her swallowing at 9:30. Donna already had planned to work with Mom over lunch and she rescheduled the morning appointment to the middle of the afternoon.

When the occupational therapist came to work with Mom at 10:00, she got her to awaken and transferred her into her wheelchair to work in the gym. Mom did a great job of sitting up on the edge of an elevated mat. She worked on her balance by picking up bean bags from a pile placed behind her back and handing them to me as I stood in front of her. She had to open her eyes to be able to hand them to me, and she did so of her own initiative. She even tried to toss one to me at one point! It was very satisfying to see her make this kind of move on her own.

Lunchtime was one of the biggest frustrations for us all today. The speech therapist sat with Mom to try to get her to eat. Unfortunately, with the first bite in her mouth, Mom began to gag and vomit. They ended up whisking her out of the cafeteria, taking her to her room to clean her up and change her clothes, and then putting her in bed. This experience completely wore Mom out. She slept for an hour or so to recover from this incident.

She had 3 successful therapy sessions this afternoon – 1 with the speech therapist and 2 with the physical therapist. She participated in her speech session with more enthusiasm and effort than we’ve seen for days. I was standing in the hallway outside of Mom’s room talking to my brother Stephen on the phone during this session, and I could hear Mom’s voice travel all the way out to me as she did the vocal exercises. This was exceptionally exciting! I ran into the room so that Stephen could hear her. He was extremely impressed to hear the strength of her voice. This was a real “up” for the day. The physical therapist worked with Mom on her leg strength to stand and transfer back and forth between the wheelchair and the bed and the wheelchair and toilet. Mom did quite well in these activities.

Supper resulted in no more than 2 bites of bread with margarine and apricot jelly and a few sips of water. She told me that she can’t think or talk about eating too much because it makes her nauseous. We are not pushing her too hard to eat at this point, because we need her to get over the nausea and think of eating in a positive way again.

Mom is continuing to show some signs of confusion. For example, she told me tonight that a friend of hers is pregnant. This is friend of hers from her Mt. Morris days in the late 50s and early 60s who has moved to N. Manchester with her husband during their retirement. I said, “Mom, she is not pregnant.” She replied, “Yes she is. She just told me during my therapy session this afternoon.” I said, “Mom, she is close to your age. Can she get pregnant now?” She said, “Yes.” I was startled by this answer, and asked, “Mom, can YOU get pregnant now?” She said, “Yes.” I said, “You and your friend are not able to get pregnant anymore, are you?” She said, “I know, but she is pregnant.” I asked more about where she got this information. She finally told me it was when her friend was helping her in the bathroom. Ah ha! Her physical therapist IS pregnant, and just shared that with us this afternoon. However, her name is Lisa and she is a young woman in her 20s, not a woman in her 70s.

Mom keeps us on our toes and we never know what each day will hold. I guess the one constant is – mandarin oranges! It’s nice to have something to rely on.

Monday Update

July 14
by Karen
(pictured at right with Hjalti, our exchange student this past year)

When we got to the rehab hospital this morning, we found that Doreen was awake this morning. She began to be alert last night - after sleeping all day yesterday. She did have an episode of vomiting last night, but all in all we were told that she had a good night.

By the time we arrived at 8:40, she had already eaten 50% of her breakfast and was with the speech therapist. When Dad and I joined her in the speech therapy room, Mom had her eyes closed and seemed tired, but she was interacting with the therapist and was following her commands. They were working on swallowing exercises. They have determined that she should have thickened liquids (at the "nectar" consistency, for those of you who know about such things) to help her retrain her swallowing muscles. This should decrease the coughing that often accompanies her drinking. They are concerned that the coughing is a signal that some of the liquid is going down her wind pipe which can lead to pneumonia.

After an hour of speech therapy, Mom rested in bed for 30 minutes until the occupational therapist paid her a visit in her room. They worked mostly on balancing in a sitting position as she sat on the side of her bed. During this activity, Mom continued to say she was tired and wanted to lie down. The therapist allowed her to take a break about halfway through to lie down for a few minutes, but then she had Mom up again to continue the hard work. The therapist then let Mom sleep for an hour before she came back to get her into the wheelchair for a session in the gym working on her left arm.

For the first time, we ate in the cafeteria with Mom for lunch. It was exciting to think that this may indicate progress. Mom ate only about half a cup of mandarin oranges (surprise!) and a few bites of other foods. She continues to struggle with finding any interest in food and eating.

After lunch, Dad and I left the rehab hospital to travel to N. Manchester for an appointment with the nursing staff. Dad had to complete a "mini-mental" assessment before we can proceed with getting him in a one-bedroom apartment in the Manor at Timbercrest. It looks as though they have an apartment for him that would be ready within a week or 2 - as soon as he indicates his firm interest. We are very grateful that this option seems to be working out so well. Gordon and Darlene Bucher have been hosting Dad (and at least one of us) in their home in N. Manchester for about 6 weeks now. Their generosity has been incredible and our appreciation for their support cannot be adequately expressed! However, we are feeling as though it is important for Dad to settle into a place that he can call his own, with things from his home, where he can begin to move forward into this new stage in his life. It is difficult for him to think about moving to Timbercrest without Mom, but we continue to remind him that the plan includes Mom joining him at Timbercrest when she is able.

We took the rest of the day "off." We visited with Egon Borgmann and a few other Timbercrest residents and then spent the rest of the late afternoon and evening at the Buchers' relaxing and getting a few things done. We look forward to hearing how the rest of Doreen's day was when we return to the rehab hospital in the morning tomorrow.

Weekend Update

July 12 & 13
By Karen

Saturday included a full therapy day for Doreen. She began with speech therapy for an hour in the morning. For the first time she was taken out of her room for this form of therapy. She also had a different therapist than she had been seeing. They held a long discussion about Mom’s activities and interests. Mom talked all about the crafts she makes for the Global Holiday Bazaar at the church, the Wednesday evening meals she makes at the church. And her love of word games and puzzles. Mom really seemed to enjoy this session. The therapist did a great job of drawing her out of her sleepiness by asking questions about topics that piqued Mom’s enthusiasm. (She had to take a little rest in the middle of the hour session, but she perked right up again after about 3 minutes.) The therapist also encouraged Mom to keep her head upright, rather than allowing it to loll to the left and back. This is an important exercise, because her sense of balance has been so severely impacted.

A physical therapist new to us visited with Mom for 2 half-hour sessions on Saturday. We discovered that she grew up in N. Manchester and has Brethren background. This created a nice connection between her and Mom. Mom was either in the bed or the wheelchair as they worked on her legs. The physical therapy work today consisted mainly of strength and flexibility exercises.

The occupational therapist saw Mom for only half an hour today. She took Mom into the gym and worked on balance while sitting and mobility with her left arm. We saw more movement in that arm today than we’ve seen so far! (Not great gains, but small and significant.) Mom had a hard time staying awake during this session, but she did the best she could.

Doreen still did not eat on Saturday, but the IV nutrition has calmed our worry about this for the time being. Saturday was the last day for antibiotics, so we hope that she will begin to regain her appetite and ability to taste in the next few days.

There is VERY LITTLE to report about Sunday. The Valium that they began giving to Mom on Wednesday, to ameliorate the balance and nausea problems, has apparently built up in her system and has completely knocked her out. She slept absolutely all day on Sunday. She was unable to respond with anything more than a slight nod the entire time Dad and I were with her (from noon until about 6:30). Luckily, no therapy had been scheduled for Sunday, because she would not have been able to participate. The only significant response we received was when we sang to her before we left. She sang with us for about one chorus and verse of “All Night, All Day.” That was great to see and it helped alleviate some of our disappointment with the day before we headed back to N. Manchester.

Dad is beginning to worry about what will happen next (in the big picture of things) and all of the work there is to do at the house in Elgin. It is difficult for him to travel to Ft. Wayne day after day and ride the roller coaster of Mom’s recovery without making what he sees as a real contribution to her progress. He knows that his presence is important to her, but would like to feel more involved as an active participant. We are considering what is best for him, as well as Mom, in the next few weeks. He is feeling as though he needs to return to Elgin for a little bit to “take care of business,” but he does not want to leave Mom. It provides quite an internal struggle for him.

Thursday and Friday Update

July 10 & 11
By Karen

The first 2 full days at the rehab hospital have been very busy. Doreen is kept moving by the therapists and nursing staff – sometimes without her enthusiasm (to put it mildly). She has been scheduled for 1 hour of each kind of therapy (speech, occupational and physical) each day. Sometimes these sessions include leaving the room to go to the gym or to a therapy room, while other times they remain in her room to complete the set tasks. The staff also tries to get Mom out of bed other times, if possible – for example, to the cafeteria for a meal. She is no longer allowed to merely lie around to recover. She is now expected to be an active participant in her own healing process.

Doreen participates in the therapy pretty well for about half an hour at a time. When the therapists have attempted to hold hour-long sessions, she often becomes too tired to cooperate after the first half hour. She even falls asleep mid-sentence or in the middle of a set of exercises! She rests quite a bit in between the sessions. This indicates that she is working hard, but it also results in fewer opportunities for conversation and interaction with us (as compared to when we were in the hospital). This can leave Dad and me feeling like things are not moving forward, because our interactions with her have decreased. However, we continue to remind ourselves that the progress she is making now occurs as a result of the deliberate exercises within the therapy sessions rather than in our communication with her. We feel confident that she is in the right program and facility and that her progress, while agonizingly slow, will continue.

Doreen still has quite a bit of difficulty eating – in other words, she’s still not eating anything. Therefore, she is now receiving nutrition through an IV. It provides her with the calories, vitamins and minerals she needs. This is a great relief to us. (We discovered on Thursday that she had lost about 22 pounds since this adventure began.) Being tethered to an IV pole inhibits her mobility, but the trade off is worth it.

The neurologist who is now overseeing Mom’s care (Dr. Jody Neer) has indicated that he wants to address the vision/balance issue and the food intake/nutrition challenge before pushing too hard in therapy. He recognizes that these are foundational issues that we must solve in order for her to gain the strength and basic skill she needs to move forward with rigorous therapeutic efforts. We appreciate his approach and continue to watch for signs of improvement in these basic areas. Her course of antibiotics will be complete tomorrow (Saturday). This should help reduce some of the possible side effects (tin-like taste in the mouth, upset stomach, bowel irritation) that may be hampering her energy level and ability to eat. We hope to see improvement in these areas in a few days.

Mom continues to show quite a bit of confusion at times. As an example, we received a call from a rehab nurse Friday morning as we were traveling to Ft. Wayne. She told us that Mom had fallen out of bed during the night Thursday. Luckily, she was not injured in any way. She got her feet slung over the side of the bed and then pulled on the side rail enough to shift her weight in a way that caused her to slide off the bed onto her bottom. She ended in a sitting position up against the bed. There was an alarm on Mom’s bed that immediately alerted the staff of the situation. When they arrived in her room, she told them that she was sure that it was her brother Jay’s birthday and she needed to get up to check the calendar to confirm this idea. (Yes, July 11 is Jay’s birthday. We had talked about that during the day on Thursday when we were discussing the July 10 birthdays of several people who are close to Mom – Jessica and Hoa, for example.) The fall, of course, was distressing news to us. It was not all that surprising, because we have seen the confusion that leads to this behavior. However, the rehab staff indicated they would have someone sitting in Mom’s room overnight to help prevent this kind of incident. We were told there was a “sitter” in Mom’s room on Wednesday night, but they had seen nothing that caused them any concern, so they did not have a “sitter” on Thursday night. As you can imagine, there will a “sitter” in Mom’s room each night again until it is determined that she is no longer at risk.

We will continue to update the blog every few days, but we may not post an entry every day. The level of activity is such that we are kept quite busy along with Mom. Thanks for your continued love and support!

Wednesday Update

July 9
By Karen

Today was a big day! Doreen is now in the Rehabilitation Hospital of Fort Wayne. She was moved from the neurological unit at the main hospital to the rehab hospital around 11:30 this morning. She was transferred in a wheelchair by accessible van. This was the first time she had been in a wheelchair. The only times she had sat up since May 29 had been in a chair in her room (maybe 5 times). We were surprised that they did not use a gurney, but it was encouraging to see that she could handle it.

Because she arrived at the rehab hospital before noon, the facility was required to try to get in the minimum 3 hours of therapy for the day. During these initial sessions they began to assess Doreen’s abilities so that the staff can create goals and care plans for her. The first therapist to see her was the physical therapist. She worked with her for a little over half an hour. She evaluated the strength, range of motion and control of Doreen’s legs. These are quite good, but are better in her right leg. She also helped her sit in a wheelchair to see how well she could propel herself down the hall by “walking” with her feet. Dad and I were pleased to see that she could do this – very slowly and with much effort, but she was able to move herself forward. They had her “walk” her wheelchair to the occupational therapy room for her second appointment. (I don’t want to give the impression that Mom was zooming down the hall on her own. She continued to “walk” with her feet, but the therapist provided most of the force as she traveled. Mom also had her eyes closed during the trip, because she said she was dizzy, which would have made it impossible for her to get anywhere by herself.)

The occupational therapist began by asking Mom to describe the kinds of activities and hobbies she enjoys. She then assessed Mom’s strength and ability in her arms. Her left arm can do very little. Her right arm shows less strength than before the hemorrhage, but is becoming more functional. Next, the therapist asked Mom to read a line of text on a card. She stared at the card for quite awhile. She finally said that she could identify the word “family,” but she indicated that she could not make out anything else. This was very difficult for Dad and me to watch. Mom has always been such an avid reader and a lover of word puzzles. I asked her to describe what she saw when she opened her eyes to look at the words. She said it was hard to describe, but things seem to swim in front of her. The therapist chose to investigate her visual and spatial ability further by having her recreate a pattern on a card with blocks. The pattern included a red square, a green square, and another red square that were side by side and created a horizontal line. Mom was then presented with a box of blocks from which to choose (of several colors and shapes). She gathered 4 or 5 red squares and 2 green squares and was trying to find more blocks when the therapist told her she didn’t need any more blocks. Mom kept trying to reach into the box, so the therapist moved it out of her reach and told her she already had too many blocks to make the pattern. She repeated the instructions to Mom to match the pattern on the card with the blocks. Mom said, “I would if I could have enough blocks. I need more.” I asked her to describe the pattern she saw on the card. She said she needed 9 blocks because she saw a 3x3 square with 3 red blocks on the left and right sides with 3 green blocks down the middle. This is a very important breakthrough regarding an explanation of why she keeps her eyes closed so much. She is seeing multiple images! It also helps us understand why she is so nauseous and has difficulty with her balance. So many of the issues Mom is struggling with are interrelated – vision, balance, appetite/nausea, strength, endurance, etc. The information about her vision will be shared with the team of rehab professionals as they decide how to proceed.

After the session with OT, Mom was exhausted. Therefore, when the speech therapist came in for her evaluation, Mom was sleeping. So, the ST decided to wait until tomorrow morning to work with Mom for her initial evaluation.

Mom did not eat more than a few bites again today, and that continues to be a major concern. We feel confident that the medical staff here at the rehab hospital will help to solve this problem. Mom needs to have sufficient nutritional intake to be able to fully participate in therapy and to make progress toward recovery.

Mom would like me to give you the address of the new facility:

Doreen Myers
c/o Rehabilitation Hospital of Fort Wayne
7970 W. Jefferson Blvd.
Fort Wayne, IN 46804

She also wants to invite anyone who is interested or available to visit. Because her therapy schedule includes sessions throughout the day and varies from day to day, the staff recommends that visitors come after 6:00 in the evening. This also suits Doreen well, because she is more awake and talkative in the afternoon and evening than in the morning.

For those who are interested in (or willing to read/hear) intimate details –
Mom wanted me to share that one of the major accomplishments of her day from her perspective was that she has begun to use a real toilet, rather than a bedpan. In order to do so, she must have the assistance of at least one staff member to transfer to a wheelchair, then transfer to the toilet. This really helps her feel more “normal.” However, all of this activity seems to induce the dizziness and nausea, and Mom has had bouts of vomiting during many of these trips. She is feeling frustrated with this pattern and hopes that we can figure something out very soon. (This pattern is also very difficult for Dad to witness. He is distressed about Mom’s inability to take in much nourishment and keep it down.)

Tuesday Update

July 8
by Karen

We have news! Doreen will be transferred from Lutheran Hospital to the Rehabilitation Hospital of Ft. Wayne tomorrow morning. It is affiliated with Lutheran and is only about 2 blocks away from where she has been for almost 6 weeks now.

Carl and Karen visited the facility over lunch time today, but we had no idea she might move that soon. We were notified that she was accepted as a patient in that program late this afternoon. The facility is very nice and its whole focus is therapy; therefore, the program requires at least 3 hours of therapy every day. This includes physical, occupational and speech therapies. Patients are accepted only if they are evaluated as needing at least 2 of these and appropriate for that level of rehab. Doreen needs all 3 kinds of therapy and it was determined that she can meet the 3-hour expectation -- slowly at first, in intervals of 30 minutes, then moving to longer sessions as she gains strength and skill. We are very pleased that she has been accepted and will begin more intensive therapy. (However, we are not completely convinced that she is quite ready yet. Please send her all of the extra energy, stamina and determination you can spare!)

Her eating was a bit better today at lunch. She ate willingly and wanted to feed herself (soup, mandarin oranges, iced tea). That was great -- until it all came up when the physical therapist began his session with her by helping her sit on the side of the bed. She said she felt dizzy and then the nausea overcame her. This ended up stripping her of all of her energy and postponing any therapy until tomorrow. (Now we know that any therapy tomorrow will be in the rehab hospital and will include more than one chance a day.)

I will give you the address and other contact information for the rehab hospital in tomorrow's entry. I have been assured that anything that comes to Lutheran Hospital will continue to get delivered to her.

We hope to have good news to report tomorrow as we enter the next phase of our journey!

Monday Update

July 7
by Karen

Word for the day: frustration.

We were hoping that by the end of today we would have some sense of what was happening next - for example, which facility would be the best next step for Doreen's rehabilitation, how much longer she would be taking the antibiotics, when we might expect to move Doreen to the next facility, etc. However, none of these questions received an answer today. We did speak with Dr. Kachmann (neurosurgeon), Sue (social worker), Dave (physical therapist), and Ann (occupational therapist); but we did not see the infectious diseases physician nor anyone from any of the rehab facilities. Without these individuals, we can not move forward with any plans. Therefore, we will return to the hospital tomorrow with hopes that more of this important information will come our way.

Doreen's lack of interest in eating is becoming more of a concern. We counted the bites of food she ate today: breakfast = 1 (a grape) + lunch = 0 + "snack" = 4 (3 slices of apple with peanut butter and a piece of lettuce with peanut butter) + dinner = 9 (1 bite of fish + 1 bite of asparagus + 1 bite of dinner roll + 2 bites of baked potato + 1 grape + 3 bites of carrot cake, for a total of 13. We are very concerned about her resistance to eating. She has lost at least 20 pounds and has very little strength. Of course, she has to eat in order to gain the energy she needs to fully participate in her recovery and rehabilitation. While it has been difficult, we continue to remind ourselves that she is not choosing to be stubborn. (This can be difficult to remember.) Rather, the damage in her brain is getting in the way of her clear thinking regarding this issue. She repeatedly tells us that she knows it is a problem and that she must eat, but she doesn't know what to do about this. She talked about how frustrated she feels because she has always loved to eat, but she has absolutely no appetite. She also finds that eating takes so much energy. We're looking for any and all ideas that might help us through this stage of our journey.

Her physical therapy session was the bright spot of the day for us. No therapists had been in to see her since last Thursday because of the holiday weekend. Therefore, the PT did not expect much from Doreen today. However, she did more for him today than she has done in any previous sessions. She sat on the left side of the bed for at least 7 minutes with very minimal support. (In fact, the PT left the room for several minutes while Karen steadied her with only one hand.) Next, we helped her to stand and then she "walked," with our significant assistance and using a walker, around the foot of the bed to a chair that was at the head of the bed on the right side. This was the longest "walk" she has taken so far. She showed great determination and strength for about the first two-thirds of the hike. After that, the PT and Karen were doing quite a bit of the work. (I discovered new muscles during this exercise.) Once she got to the chair, she sat for about 50 minutes without complaining or asking to lie down once! This was a welcome change from last Thursday. While the session with the PT was encouraging, it seemed to take all of Doreen's energy for the rest of the day. When the occupational therapist came in several hours later, she had a hard time getting Doreen to do much. However, she did remark that she noticed better strength and balance than when she saw her last Wednesday. She indicated that she will try to coordinate with the PT so that they can come in together tomorrow.

Doreen's family members have put all of the cards and notes she has received up on the walls of her hospital room (a total of about 125). Every day hospital staff members exclaim that they have never seen this many cards and remark about how this shows what a special and well-loved woman Doreen is. This is a great moment for Doreen each time it occurs. The highlight of her day is when the mail arrives. She cherishes the words of love and encouragement that many of you have sent. Your continued support is invaluable to her (and to us). If you would like to add to her wall of cards, but haven't found the prior message with the address of the hospital, here it is again:

Doreen Myers
c/o Lutheran Hospital
7950 W Jefferson Blvd
Ft. Wayne, IN 46804

We hope to have more of a report regarding future plans in the next entry. Mom and Dad wanted me to express their humble gratitude and love to all of you. Thanks for continuing to keep them in your thoughts and prayers.

Saturday Update

July 5, 2008
By Karen

We have felt like we have been in a holding pattern for the last several days. We are waiting to make any sort of movement (in treatment, facility, therapy, etc.) and things have remained very similar ever since Thursday or so. (Thus, the lack of entries since Wednesday.)

Doreen has been cleared to begin rehab, but the long holiday weekend has slowed things down. Dr. Kachmann has requested for Doreen to stay in the Lutheran Medical Complex in Ft. Wayne until she is finished with the current round of antibiotics. They were prescribed in response to the fever of last weekend. Kachmann wants to monitor her condition in the few days after the course of antibiotics has ended to see whether the fever returns. If it does, then he will interpret that as an indication that there is an infection in the shunt, and he will need to remove the current shunt and then replace it. It would be okay with him for her to move to the rehab hospital on this campus, but he does not want Doreen to have to travel back and forth between North Manchester and Ft. Wayne; therefore, he wants her to stay here until it has been determined that her shunt is clear of infection rather than move immediately to Timbercrest in N. Manchester. However, we have had a hard time finding out how long her current course of antibiotics is to last. This morning, Linda spoke with the infectious diseases physician and we believe that the antibiotics should be finished sometime in the next week, but no clear timeline has been communicated to us. I guess we’ll have to wait until Monday to get any solid answers about what will happen next.

We are working diligently to get Doreen to eat more in order to avoid losing any more weight. Last night and today for lunch and dinner she has done much better! She has been more willing to try foods, has complained less and is no longer worried that the food will upset her stomach. This feels like a great accomplishment! It is very satisfying to see her enjoy eating again – even though the amounts are still very small. In fact, tonight at dinner she seemed proud to be able to feed Carl with her leftovers. Karen suggested that, while this may seem economical, Doreen needs to work toward feeding only one person with her meals – herself – so that she builds the strength she needs to learn to sit and stand again.

Doreen moves between times of great clarity – she gave very specific financial information to Karen and Carl this afternoon – and times of obvious confusion – she argued that she IS attending the Church of the Brethren Annual Conference in Richmond, VA next week: “They have wheelchairs!” she explained. It seems that she is struggling with determining the difference between her dreams and reality. We are trying to encourage her to open her eyes more often – they are closed almost exclusively. She says that it is very hard work to keep them open and that it wears her out; however, we believe that this will provide her with the needed information to sort out when she is awake and when she is asleep.

We’ll provide another update as soon as we have something new to report. Thanks for your continued love and support. She told the nurse the other morning that she could feel the prayers and thoughts of those who love her. Keep them coming! (The cards and letters help a lot too!)

Wednesday Update

July 2, 2008

by Judy and Karen

 

When Judy and Carl arrived in the morning, the nurse informed them that Dr. Kachmann had been in and that he was recommending that Doreen begin rehabilitation in one of the Lutheran Hospital rehab facilities on the hospital campus. That would allow him to continue to monitor her for about a week to 10 days. It seemed that he was saying that she could be moved to that facility in the next few days, because she does not need the same level of nursing care as earlier, but she clearly needs to begin the therapy routine that will prepare her to move forward in her recovery. Dr. Kachmann is wanting to watch her progress over the next several days as she is given antibiotics, but he is not ready to do any more procedures with the shunt at this point.

 

The occupational and physical therapists came in together today. Doreen was alert, but several times during the session she said she really just wanted to lie down. This therapy is hard work! They did get her to sit on the edge of the bed, work on her balance, kick her legs, stand up, and use the walker to take a few steps and maneuver to the chair. She sat on the chair and stood up again a couple of times, and then she remained sitting for almost a half hour. She was worried about being nauseated, but she did not get sick. While she was working with these therapists, the speech therapist came in, but three therapists at once would probably create spontaneous combustion, so she said she would come back later. We did not see her the rest of the day, but hope she will come tomorrow.

 

Karen arrived around 3:30 and was very pleased to see Doreen more alert and responsive than when she left June 11. She is much easier to understand and conversations last much longer than they did 3 weeks ago. However, it was very clear to Karen that Doreen has lost quite a bit of weight. Eating is still a challenge. The dietitian is willing to try anything. Doreen has eaten very small amounts at each meal, but not enough to satisfy any of us, and probably not enough to satisfy her basic needs. Her best response was to watermelon and mandarine oranges, and she did have several sips of a root beer float. We want to start identifying some protein sources that are appetizing to her!

June 30 Update

(This one is out of order: it is the update from Monday.)

Monday June 30th
by Amanda (with thoughts from Carl)

Grandpa, Kelsey and I arrived at the hospital around 10:00. We were very pleased to see that grandma was alert and had only a slight fever. She told us that during her session with the speech therapist that morning she had experienced an upset stomach. She told us she didn't feel badly, but that it had occurred after another coughing fit.

Soon after we arrived a representative from Peabody came to assess grandma. She asked her a number of questions and wanted to hear updates from us as well. Grandma did very well with responding, though when asked the date, she stated that it was "Saturday, June 28th." We believe that because she has been dealing with the fever during the past couple of days, she basically lost two days in her mental timeline.

Kelsey and I were very pleased with how well grandma was doing all morning. She was as alert as we had seen her, was very talkative and speaking more quickly and clearly. Though she didn't have an appetite for the breakfast she had ordered, we were able to get her to eat some fruit and she initiated holding her own cup and fork.

Grandma napped from around noon until 5pm. She seemed to be sleeping more comfortably. While she was sleeping Dr. Kachmann visited. He seemed surprised and concerned to hear that grandma had been feverish during the past days. He took some fluid from her head and ordered chest x-rays. He also asked the nurse to call the doctor for infectious diseases. He expressed that her symptoms could indicate that she was experiencing a shunt infection.

During her nap, Kelsey and I hung all of the cards we found in the room. We counted around 110 cards! The nurses that came in throughout the day said they had never seen so many cards in their hospital rooms. Our hope is that they will not only encourage grandma, but also represent to those working in the hospital how supported and loved this woman is.

The evening came with chest x-rays, a visit from the doctor for infectious diseases, and more upset stomach. Dr. Kachmann came back and told us he wanted to wait to get all of the test results back before taking any action with removing the shunt (a procedure that would have be performed if there is an infection).

We helped grandma eat some dinner (again, she did much of the work), sang some songs that she requested (she sang the alto part), and said our goodbyes for the day. As we were leaving, she asked that the TV be turned on. It seems that her long nap this afternoon energized her, which was very encouraging!

Reflections on the day as shared by Carl and recorded by Judy:
It was a discouraging day for him. He keeps hoping for continued improvement, and the up-and-down nature of the recovery has been very difficult for him. Some days he has glimpses of Doreen's mortality, and that is very sobering. But as he and Dr. Kachmann shared, she is a fighter, and we are all going to do what we can to help her get through this.

Carl had the opportunity to do some impromptu chaplain work today. He was in what is called the quiet room across the hall from Doreen's room. A woman in the room seemed distressed and sad, so Carl talked with her and encouraged her to look at the gifts she had to give to her family. Supporting others can be a very therapeutic activity for all of us.

Tuesday Update

Note: June 30's entry will be contributed by Kelsey, Amanda, and Carl (Carl's contributions interpreted by Judy) and posted when the granddaughters return home to New Jersey and New York from their trip.

July 1, 2008

by Judy

This was a good day today! The ups and downs continue, and this was an up. Doreen was awake all day except for a short nap. and most of the time her eyes were open, she was engaged in conversation, and she was alert. Her temperature was basically back to normal. She saw the occupational therapist, who had her work on filling in a calendar. She saw the physical therapist, who had her stand up and use a walker to move to and sit in a chair for about 15 minutes. She saw the wound specialist, who checked out a yeast infection that is getting much better and the infectious disease specialist, who was encouraged that her fever was gone (at least for now). She also worked on crossword puzzles with Judy.

When Dr. Kachmann came in, he was also pleased about the disappearance of the fever, and he was glad that he had not moved too quickly to replace or remove the shunt. But he is not guaranteeing that it will not need to happen in the future. Because Doreen is on antibiotics, the blood culture could be less than accurate. The antibiotitics may attack any germs in the culture. So he wants to give the culture another day or two to see if anything grows. His plan is to see of the progress continues. He is suggesting they take away the antibiotics for a couple of days, and if the problems return, it is likely that the shunt is infected and needs some attention. In spite of these problems, though, he believes things are going very well.

Unfortunately, some of the issues with eating have not improved. Doreen continues to have very little appetite and has had trouble keeping her stomach settled. No one has a final answer for that problem (although it is common for hospitalized people), but everyone keeps encouraging her to eat in order to build up her strength and get her digestive system back to being close to normal. She says everything tastes like the hospital. That could be in part because of the IV fluids and medications she is getting.

As Doreen becomes more aware of what is happening, it has been interesting to see her attempts to come to grips with the situation. One statement she made this evening was interesting. She said she sometimes feels like she is outside of the situation and watching things that are happening to someone else. That seems to be consistent with all of the experiences of sleeping, half-sleeping, dreaming, being in an unfamiliar place, and so on. She also asked if the hospital would allow her and Carl to just go home overnight and then come back. It would be great if she could have a break like that from the stresses and strains of her hospitalization. Gradually, we hope she will be able to understand the situation without being overwhelmed by it or becoming depressed.