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.