Sunday Update

Today's edition of the blog is brought to you by Doreen's granddaughters Kelsey and Amanda.

Sunday morning we went with Lee, Linda, and Dick to spend a couple of hours with grandma. When we first arrived, she was fairly groggy, but as we talked to her and encouraged her to eat, she perked up quite a bit. We were told her temperature had been high again that morning, but it was closer to normal during our morning visit. We were able to get her to eat all of her serving of watermelon and banana which was a welcome change after a primarily liquid diet the day before. Grandma requested a sweet potato for dinner and eggs and hash browns for her breakfast for Monday. We left around 1:30 to attend the memorial service for Sandra Borgmann.

The service was a wonderful celebration of Sandra's life and we were very proud of grandpa, who was the soloist during the service. We were all very touched by his strength and the beauty of his voice especially during such an emotional time.

After the service we (Kelsey and Amanda) went back to the hospital to spend a couple of hours with grandma. (Giving our parents the opportunity to go home and grandpa a much needed rest.) When we arrived she was very warm to the touch and seemed to be in pain. We talked to the technician who said grandma had a fever again. Once the proper medications were administered her fever was drastically reduced and we saw grandma as grandma again. We were able to get her to eat some of her sweet potato and strawberries and we shared stories in a very conversational way. We were then pleased as she seemed to fall into a very comfortable sleep before we left (unlike any sleep we'd seen in the past two days).

We have been so moved by the outpouring of support through visitors, cards, calls, and kind words that we've witnessed during our visit and heard about during the past month. We are so thankful that our family is in such good hands, especially since we are currently living so far away.

Saturday Update

June 28, 2008

by Judy

We have been told by many as we began this journey involving brain trauma to expect good days and bad days—2 steps forward and one step back. Well, today was at least one step back. The nurses could not wake Doreen enough to give her breakfast, and we could get almost no response from her. She had a slightly elevated temperature that became a fever as the day went on. The doctors decided to get another CT scan.

It is unfortunate that this “down” day came when two of the grandchildren came to visit. Kelsey and Amanda came from New Jersey and New York respectively to visit their grandmother (and their parents). There were some advantages to this situation, too, however, as the granddaughters were able to do some very basic care with their grandmother, including feeding her some Jello and ice cream, rubbing her legs, and trying to keep her appropriately warm without being too hot.

The family was still awaiting some explanation for why this lethargy occurred and what was causing the fever as the day ended. We were all thinking as we were reluctantly preparing to leave for the evening that steps sideways would be easier to handle emotionally than steps backwards. Then, amazingly, she wakened a bit, she looked at her granddaughters, she held their hands, and she talked a little bit. She also asked about any cards and listened (and commented) as they were read to her. Whew! It was a great relief for everyone after a day of inactivity and overt quietness. (And yes, don’t doubt that one can be overtly quiet.)

Friday Update

June 27, 2008

by Judy

Today we began to see a bright light at the end of the tunnel! We can be fairly sure that no more surgeries lie ahead, and we said good-bye to intensive care. Doreen had 7 different visitors (in 3 groups) and a long phone call, and handled them all very well. She cooperated with the therapists and initiated some of the exercises herself. She fell asleep only a few times. We have lots of reasons to feel positive and optimistic!

When Dr. Kachmann came to see her in ICU, it took very little time for him to say it was time to get her out of that unit. He said it was time to get her closer to home. Clearly, the shunt surgery did what it was supposed to do, and he feels we are ready for the next step.

The therapists came to ICU before she was transferred, and they had Doreen sit on the edge of the bed, which she did with only minimal support, and she was able to correct her balance reasonably well. They had her lift her legs while sitting, and they had her push against resistance with her arms and her legs. Her left side is still clearly weaker, but she was able to lift her left arm by herself. To get it over her head, though, she needed help. When they asked her to comb her hair (what is left of it), the purpose was occupational therapy, but she wanted a wider-toothed comb. We are afraid there will need to be a little more attention to her hair before it will meet her standards.

Eating remains a concern. Anything that seems too heavy is difficult for her to handle. So she has more interest in fruit, Jello, and drinks than in main dishes. She does have a lot of flexibility in what they will allow her to eat, though, so we are continuing to look for new and appetizing options that will also be nutritious.

When Judy did a crossword puzzle with Doreen today, she was doing it very quickly. She did not get a confused about some of the clues as she had in the past few days. So it may be time to try harder puzzles, although it will get easier when she is better at using her vision. Some confusion still shows in the understanding of when things will or did occur in her social schedule. We will gradually try to help her understand the extent of interruption that is occurring in her life. The increased awareness and functioning is both an advantage and disadvantage as she remembers her plans and needs to be told what will not be possible.

This weekend will be a time to visit with some grandchilden and others. It is wonderful that she will be able to enjoy it more after these advances!

Thursday Update

June 26, 2008

by Judy

We hope that today's surgery will be the last that Doreen will need for a very long time! For the fourth time in the last month, she had a neurosurgical procedure done. This time it was the installation of a shunt. Dr. Kachmann removed the drain and threaded a tube from that spot in her brain through her neck and chest to her abdomen. This will be permanent and self-regulating. When the pressure from the cerebrospinal fluid is too great, it will allow for drainage from the brain into the abdomen where it will be absorbed by the body. When the pressure is fine, the shunt will stay closed.

When Dr. Kachmann removed the drain, he said that a significant amount of fluid spurted out. This confirmed for him that Doreen needed the shunt. That build-up explains some of the concerns that we all had about Doreen's behavior over the past few days since the drain was clamped off. It will take some more days to see whether things really improve now, though.

In the pre-op area, Doreen said she did have a question for Dr. Kachmann. She asked him if he was planning to use a chain saw. We interpreted that to mean that she was relatively relaxed before the surgery!

After she returned to her room, she was in a quite a bit of pain. She said her head hurt, and that her mouth and throat were sore. She also indicated that her abdomen was sore where 3 small incisions were made for laparoscopic procedures to locate the output areas of the shunt. Some of the problem with her mouth and throat would be due to the fact that she had a tube in her throat during the procedure again.

Because she was in pain, the nurse offered pain medications. Several possibilities were offered by the doctor's prescriptions. A dose of Demorol was given IV at the lowest prescribed level, but it clearly was VERY strong for Doreen. After getting that injection, her heart rate, pressure, and respiration dropped lower than was comfortable for any of the rest of us. The nurse did several things to keep her alert and try to raise those levels. A couple of hours later, she was resting very peacefully and sleeping well--even if it was somewhat drug-induced.

Before the family left in the evening, the nurses pried her eyelids open to check her pupils and asked the usual questions of where she was, what year it was, and why she was there. She answered the questions very well, although in a very drowsy way. We look forward to tomorrow when the drugs continue fade so that we can measure the success of this latest intervention. It is possible that she could be moved from intensive care back to the other hospital unit tomorrow, and the surgeon is predicting that she will be discharged from the hospital next week, although no day was given. We are looking forward to a new setting closer to where we are staying!

Wednesday Update

June 25, 2008

by Judy

Today Doreen seemed bright and alert when Judy and Carl arrived. But they found out that she had eaten very little breakfast. They tried to encourage her to eat more English muffin, and they filled each other in on the happenings of the previous day. When the mail came, Doreen read her own cards, although slowly. It was exciting to see her using her vision and processing the things around her by herself.

At lunch, she ate with a lot of help and encouragement. She did fairly well. When the occupational and physical therapists came, it was a struggle to get Doreen to participate. She leaned heavily on the support they provided, and she struggled to sit up and maintain her own balance. The goal was to get her to take a few steps with the walker (as she apparently did the day before), but she did not have enough strength. She kept saying that she wanted to lie down. The therapists finally got her to standing and had her take about two or three side-steps to move up futher on the bed, and then they let her rest. Doreen said that maybe she could cooperate more if she knew ahead of time that they were coming. They said that was very hard for them to do, and they also pointed out that she had done very well the previous day, and that was without any warning either. We hope this will get better in the future!

One thing that may have contributed to the poor performance was the discussion that Doreen and Judy had just before the therapists came. Doreen said that she really needed to go to the memorial service for Sandra, their good friend, on Sunday. Judy had to explain that it just could not happen. She would not be released from the hospital before then, and her needs would be too great. Doreen is a person who has always been able to make things happen when she wanted them. This disappointment is very difficult for her. Added to that is the brief discussion they have had about how unlikely it is that she will be able to live in her former home.

Shortly after all of this, Dr. Kachmann came in. When he saw the Doreen was listless, heard that she was not eating well, and heard that she went in and out of being alert, he instructed the nurses to put her on the schedule for Thursday morning to have the shunt put in. He explained that people of this age are not likely to become unconscious or totally unresponsive as an indicator that they have problems with the brain fluid build-up, but instead would show the pattern of being more and then less alert as she had shown. He also had another CT scan taken. We understand that it showed no change.

Please keep everyone in your thoughts and prayers as Doreen undergoes her fourth surgery on Thursday morning.

Tuesday Update

June 24, 2008

by Judy

Today was a day to renew ourselves by taking a short break from hospital visits. Judy returned to Purdue and talked with 45 middle-school 4-Hers in two sessions about Living with Parents. Although the issues that teens face when living with parents are different from what Carl and Doreen's children are facing now, there are important overlapping themes of learning to understand and respect each other's needs and perspectives. Carl took a day to visit with many friends at Timbercrest. He estimated that two dozen people stopped to ask about his and Doreen's well-being at dinner. There are many friends who will welcome them when and if they can make that move! Thanks to all of you who made him feel so welcome.

Reports from nurses and phone calls with Doreen indicate that there is not much change from the last few days. She is not eating very well, and she goes from being very lucid and aware to showing some confusion about where she is and what is appropriate in that setting. She has requested items from her bag or her room, and she sometimes forgets she is in a hospital rather than in someone's home.

We think that the doctor did not visit Doreen today, and there is no surgery nor CT scan scheduled for tomorrow, although that may change. It is likely that the doctors and nurses need to observe her longer now that the drain has been clamped off to determine the next steps. The lack of having any scheduled procedures does mean, though, that her condition did not deteriorate enough to mean that something needed to be done immediately.

Some notes that were not in the last posting: Yesterday Doreen helped to complete a complete crossword puzzle. She provided all the answers after Judy read the clues. Although she did not look at the puzzle, she knew all the answers. Now we need to get her to look at the puzzle itself! It also is important to note how she is trying to understand and get some control of her care. When Dr. Kachmann visited on Monday, Doreen asked, "If I didn't have a stroke, what did I have? Was it an aneuriysm?" She had heard much of the discussion about her condition, but she is trying to work through more of the details. It also is telling to consider how she answered one of the questions from the cognitive assessment. The item was "What are the advantages and disadvantages of being a doctor?" The advantages she listed were that you could care for your family members and could understand your own health well. The disadvantage was the hours.

Sunday & Monday Update

June 22 & 23, 2008

by Judy

On Sunday, Carl and Judy attended churches in North Manchester and Lafayette respectively, so they arrived later than usual at the hospital. Doreen was awake, wearing her glasses, and asking questions. She had been expressing concerns to the nurses that she had responsibilities for the memorial service for Sandra Borgmann. That memorial service will take place on June 29, and Doreen would have been involved with planning the service and reception, and she is not quite convinced that she will not be able to take that role.

Judy had not seen Doreen for a few days, and she found her to be stronger and more conversant than when they had last been together. It is important to mention that Doreen asked about Judy's health and wanted an update on issues she had dealt with. Doreen is still very much the caregiver.

On Monday, Doreen was still talking about what she needed to do to get ready for the memorial service. The family promised to try to record the service so that she can expeience it, but we acknowledged that it will be very difficult for her to miss this event. Later in the morning, Doreen talked with granddaughter Amanda on the phone (a very coherent conversation), and said that she hoped she and Grandpa Carl would be able to visit Amanda in New York on the way to or from the church's Annual Conference in July at Richmond, Virginia. We have not yet discussed the fact that she will not be able to attend that event, either. There are many disappointments that everyone will need to face over time.

Also on Monday, Dr. Kachmann visited and gave the order to clamp the drain. This will continue for 24 to 48 hours unless there is a need to do something different earlier. They will look for headaches, excessive drowsiness, or loss of the some of the gains Doreen has made. If any of those things occur, they will reopen the drain. We believe they will also do another CT scan on Tuesday (or later) to see if there is an accumulation of fluid. Either of those outcomes would provide evidence of the need of a shunt. If Doreen does well and shows no additional accumulation of fluid during this period (and maybe a little longer), they will assume that she does not need the shunt. So now we wait.

One of the challenges at this point is keeping Doreen eating. She does not have a lot of appetite, and she has lost weight. We continue to try to find things that interest her, and we continue to offer the magic mandarine oranges, but she does need more than that!

The speech therapist who visited on Monday focused on cognitive functioning rather than speaking and swallowing. Doreen did very well with correcting senctences that did not make sense and identifying the advantages and disadvantages of various situations. The area in which she struggled involved using her eyes. She continues to keep her eyes closed much of the time, and that seems to be causing some confusion. We realized that she was making a lot of assumptions from short glances and not carefully looking at the things around her or by not looking at all. So, for example, she said that there were 5 chairs in her room, even though there were only 2. So looking and interpreting things around her will be major tasks in the near future.

On Tuesday, Judy needs to be at work, so the family is taking a one-day break from visiting the hospital. Carl has been there every day since May 30, so family mimbers are encouraging him to think about other things and to further explore the Timbercrest Retirement Community. So he will be there spending time with friends, and he and Judy will check in with each other again in the evening and travel together to Ft. Wayne on Wednesday morning, hoping to hear the verdict after the drain was clamped. It is difficult to be away from Doreen, but it is also important that the family keep the rest of their lives in balance. Note that anyone who would like to visit the hospital may want to wait until Wednesday or later when family members will be available.

Saturday update

by Linda

Doreen was newly curious today for an extended conversation with lots
of give and take. This was reassuring after the steps that felt either
backward or, at best, sideways. She has asked a few things before but
she started this morning asking a series of questions, one after
another, in a logical progression toward understanding "what happened
with my head." Time frames are very foggy and hard for her to put
together but she is working and thinking and trying to process the
situation a lot of the time now. She pulls some things from memory and
some things from the present and seems to combine them logically some
times and quite creatively other times. She was able to participate in
a conversation that was downright chatty with her brother Jay. She
spoke for 8-10 minutes with the telephone resting on her pillow. Her
speech was a bit slow and thick but she was on target. After she has
exerted herself like that, she hibernates for hours.

Eating continues to be a huge undertaking. She chose spaghetti today, a
challenge for her helpers to balance the wiggly stuff on the fork, as
she quite adeptly uses the fork to feed herself. It just simply takes a
long time. She waits to decide which food she wants for each bite,
chews slowly and deliberately, asks for sips of drinks, closes her eyes
for a bit, asks why she doesn't have Parmesan cheese or garlic bread,
and then LOVED the taste and texture of her dessert of cheesecake but
needed to have us hunt down some hot peppermint tea to have with it! It
was actually heartwarming to have that opinionated determination
surface again.

Tag---Judy's it. She is coming Sunday afternoon again as Linda and
Parker need to return to Illinois tonight. We are strongly encouraging
Carl to attend the morning church service in North Manchester with the
desire to return to some semblance of normal routines.

Friday update

by Linda

10 steps for Doreen, a giant leap for peace-of-mind! This morning
before we arrived at the hospital, the physical therapist and nurse
helped Doreen take some steps (with a walker and their support) to a
chair where she sat for a couple hours! This major activity absolutely
exhausted her but we all felt so encouraged by the move out of bed
where she has spent nearly all her time for three weeks. After a good
long nap, she was eager to spend time with visiting family and several
dear friends from N. Manchester. She has an awkward grip on some of the
time sequences of the past weeks but a sure grip on some quick quips
and comments. "Mom, are you OK? You're making some really funny faces."
"I only have one face," she replied.

Doreen was able to use a spoon to eat half a bowl of tomato soup and
some jello and not one drop fell onto her "bib." I had never seen
someone chew a bite of jello for half a minute but she was savoring the
flavor and texture every moment. Eating takes a long stretch of time
and she exerts a lot of effort but she is taking more and more personal
care of her nutritional wants and needs.

We often need to remind her to open her eyes in order to help her
center her attention on a task like eating or exercising. She finds it
comforting to visually close out some of the things around her when she
is trying to concentrate but looking at what she is working on will
help her reinforce the brain pathways she needs to strengthen.
We are considering next steps----all the who, where, how kinds of
things. Now that we are out of the basic crisis mode, future questions
loom large. Moving from reactive to proactive decisions is a challenge
for the four of us offspring (and extended family) as we are stretched
around the country. We want both parents to be engaged in some kind of
enriching tasks and to be looking forward. Steps along the journey...

Wednesday/Thursday update

by Judy

Wednesday was another coasting day for Doreen. She seems to need to
take some days to process all the things going on around her and simply
regroup and gain strength. She was inactive much of the day with her
eyes closed. We try to remember that each step of the journey is
another step along the journey.

Thursday has been a different day regarding activity. (And after four
days of being away, Linda clearly sees marked improvement as she takes
the baton of caring from Judy for a few days.) Doreen was helped by the
physical therapist to stand a few moments as she moved to a welcome new
piece of furniture--a potty chair. It was actually encouraging to hear
her complain of tired neck and shoulder muscles from so much physical
exertion! Carl noticed that she brightened considerably when grandson
Parker arrived for a visit. He was glad to be able to help her with
lunch. When he asked what she likes so much about the mandarin oranges,
she said she likes the juiciness. Occupational therapy induced good
responses with the left arm and some growth toward more balance as she
sits on the side of the bed for a minutes or so. We are being asked to
encourage her to practice using the left side. It's important to repeat
activities to strengthen the pathways in the brain that control each
movement.

Dr. Kachmann was so pleased with the different response from yesterday
that he questions whether or not he will need to insert the permanent
shunt. He will experiment with clamping off the drain on Monday to see
how she tolerates any fluid excess for a day and then decide from
there. We are eager to learn if she can avoid more surgical
intervention.

Doreen fed herself supper (mostly) and it was an adventure of catching
noodles and stabbing mandarin oranges with a fork. When Linda snitched
a bite of chicken saying she was making sure it was safe for Doreen to
eat, Doreen quiped that it would have been more helpful to have tested
the food before she had already eaten several bites. A point well made!
When she was given a choice of vanilla or chocolate pudding, she asked
for some of both with, of course, mandarin oranges on top.

She is humbled by the cards, visitors, calls, and all the love being
sent this way. We thank you.