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.