Tuesday, July 15, 2008

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.

Monday, July 14, 2008

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.

Saturday, July 12, 2008

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!

Thursday, July 10, 2008

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, July 8, 2008

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, July 5, 2008

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, July 2, 2008

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, July 1, 2008

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.