Sunday & Monday Update

August 10 and 11, 2008
by Judy

On Sunday, Carl and Judy attended the Manchester church and then enjoyed being taken to dinner by a friend before going to the hospital. When they arrived, they found that Doreen was being fed the full 75 cc's an hour through the stomach tube. She was tolerating the process well. Her interest in food had not continued to grow, though. She was back to eating a few bites a meal, and she was not talking about cravings. This easily could have been because she was getting fed constantly through the PEG tube, so her stomach was full. Judy asked if the feeding through the tube could be stopped during meals, but the nurses said that the orders were for continuous feeding, and they could not change that. But they did say that they would pass our request on to the doctor, and some hinted that they agreed with our request.

Doreen was going back to wearing more normal clothes and fewer hospital gowns, so Carl and Judy went shopping for some more simple lounging clothes. They also looked for something that would meet the need of the latest request from Doreen--chocolate-covered, peanut-butter-filled pretzels. She insisted that she had found them the day before and that we just need to get them out of the cabinet. Actually, she had found them in May and brought them along on her trip to Indiana. The rest of us enjoyed that fact, and we finished eating those snacks a while ago. (Little did we know that we would get "caught.") But we looked for something simlar.

On Monday, Carl and Judy arrived in the morning shortly before the physical therapist. He worked on rolling back and forth, seeing if Doreen could do that on her own. He said she did much better than before, but that kind of motion is problemmatic for her. It causes her to feel some dizziness and vertigo. But she did not vomit, and she has not done so for a few days. That is getting better!

The doctor was also doing rounds when the family arrived, so Judy talked with him about the idea of stopping the feedings during mealtime to encourage appetite and the eating of regular food. His first response was that he would not do that, because she needed the feeding. He said he had done this many times, and that he knew better than we did. Judy said that he knew the medicine better than the family did, but that she knew Doreen better, and the she had seen interest in food in the past few days for the first time in weeks, and she wanted to take advantage of that. The doctor said that he would do whatever we wanted, but made it clear he thought it was wrong. Judy then asked how long he anticipated Doreen would be in Progressive, and he said she would be there for 25 days. She asked what kind of placement he thought she would be ready for when she left, and he said that she would need skilled nursing care for the rest of her life and suggested that she would not get much better than she is now. He said that she has severe brain damage. Unfortunately, Carl had walked up during this conversation and heard the doctor's statement.

These statements contradicted what we have heard from almost every other professional we have come in contact with. Yes, there was clearly brain trauma, and there will likely be lasting brain damage of some kind. But everyone has said that it will take a long time to find out what kind of damage has been done, and recovery is a very slow process. There is always hope, and hope is one of the most powerful medicines Doreen can receive at this time. Judy was not willing to accept the doctor's prognosis, but Carl was devastated by it and started to second-guess his decision to move into Timbercrest.

Judy talked to Carl afterward and pointed out that she felt those were very irresponsible statements. Some of the staff talked to Judy and Carl to check out how those statements had been received and also to point out that they were seeing real progress and didn't agree with the doctor, either. Kurt Borgmann came to visit, and he also talked about the long recovery and progress with his father after his auto accident and brain injury in March. He has seen amazing but slow and steady progress in his father and reminded us that progress is still be in our future. Later, the hospital administrator and head nurse had a conference with Carl and repeated many of the same reassuring comments. As frustrated and angry as we were with the doctor's comments, the responses and support from the rest of the staff were affirming and hopeful.

All three therapists--physical, occupational, and speech--came while Carl and Judy were there. Although Doreen had her eyes closed again for much of the day, she did very well in all of her therapies. She continues to amaze everyone with her memory. As Judy was filling out forms, Doreen was able to provide phone numbers, e-mail addresses, and zip codes from memory, impressing the speech therapist. During her speech therapy, she was building her speech and swallowing muscles by yawning, puckering, and smiling in succession. She had done that for a while when she called for Carl. He wasn't in the room at that moment, but Judy went to get him. When he came in, she used her index finger to beckon him. He asked what she wanted as he stood next to her, and she said, "I don't want all this puckering to be for nothing" He gave her a kiss, saying the first one was her idea, but then gave her another, saying it was his idea. Doreen did have a couple of food requests again--bagels, and lettuce spread with peanut butter.

Tuesday is the day for Carl to have a physical exam and to move into Timbercrest Retirement Community. It will probably not be possible to fit in a visit to Ft. Wayne. Wednesday, Judy needs to be at work in Lafayette. So we are counting on the loving hands of the Manchester community in Timbercrest and beyond to support and nurture Carl and Doreen and provide them with opportunities for contact. We will share information here in this forum by Tuesday evening or Wednesday about how the support will be coordinated. We rejoice in the way we have been enveloped in this caring community. Once again, thank you!