Update on Craig and Susanne 8-30-08

I just did the update below for family and thought you'd want to see it too. I appreciate your companionship through this. Love, Susanne Whew, what a couple of weeks this has been. I just fell apart this morning (couldn't stop crying!) from exhaustion and stress and am now rebalancing. Our friend Nik is at the hospital with Craig at the moment covering for me, and Craig is in the process of moving from intensive care to a regular bed on Lerner Tower 4th floor, neurological ward this afternoon. His daughter Michelle left yesterday, but his son David is back from vacation and daughter Leah due in shortly from DC for the weekend. Throughout this year, the kids have tended to connect with their Dad as he's healing and not during the crisis period, so it was such a relief and blessing having Michelle with me through the emergency room and intensive care experience this week and to have her help at home. Nik accompanied us through both hospital experiences as well. Michelle hadn't seen me in action as a patient advocate before so it was a learning experience! They made the mistake of putting us in an ER room with a telephone (cellphones don't work there), so when a doctor from the neuro team hadn't showed up in 3 hours, I called the oncologist and had him get in action. Someone showed up in about 15 minutes! Michelle also got to experience how challenging it is being in a room with a patient and having alarms go off regularly (we took turns being in the room with Craig that first night). We discovered recently that our trusts and wills, etc. were not completed competently, so Michelle's background in insurance, banking, etc. was such a help this week. She worked with our new lawyer and is helping us get our documents and records into order. It was stressful doing the hospital stuff and all that at the same time, but a relief for her father and I to have someone we trust knowledgeable and handling what needed to be done. Thursday evening turned into an impromptu anniversary party for us with a few friends and cookies. Dick Yates sang happy anniversary to us, and we ended the day with just the two of us reading a very moving tribute from a couple about our marriage and our work to benefit other couples. During the evening, Holly Timberlake, a long-time close friend and counselor walked Craig through some visualization and healing exercises which helped Craig connect with joy as well as continue the process he's in of accepting that the journey he's on is one that may take him into the next world. A number of people close to us are walking with us as we experience the limitations of the medical personnel to create miracles. Yesterday was difficult in some ways. Craig seemed a bit depressed and I was exhausted and we both struggled with seeing the outcomes of various assessments of his abilities. Physical therapy, occupational therapy, and speech therapy all were in. The right leg is still minimally responsive and the right arm not at all. They are saying that Craig is experiencing both aphasia and paraphasia. I've been looking those terms up this morning. Aphasia is a loss of the ability to produce and/or comprehend language or the interpretation of language. It is not a result of deficits in sensory, intellect, or psychiatric functioning, nor due to muscle weakness or a cognitive disorder. Depending on the area and extent of the damage, someone suffering from aphasia may be able to speak but not write, or vice versa, or display any of a wide variety of other deficiencies in language comprehension and production, such as being able to sing but not speak. When they tested him, Craig had some difficulty with reading, following directions, etc. He has struggled since this last surgery with time and number difficulties - unable to tell us what year or month it is, unable to count, etc. Yesterday he was back able to count to ten and list the days of the week, so that was improvement. Paraphasia is when one loses the ability of speaking correctly, substitutes one word for another, and changes words and sentences in an inappropriate way. The patient's speech is fluent but is error-prone, e.g. 'treen' instead of 'train'. For instance, Craig has grouped in his head "wife, sister, mother" and sometimes introduces me as his sister. He is frustrated with difficulties in expressing himself at times and expressed concerns about "losing his marbles." We tried our best to reassure him, but he's very unhappy at the limitation. Sylvia and Dave from Craig's office stopped in and he recognized them and was able to converse with them and his cousin Ann and partner Pat stopped in for a visit. He was able to talk to them relatively well and when we talked at the end of the day, he listed the visitors as the happy moments of the day. We met with the surgeon late yesterday afternoon. He said that the team is baffled at Craig's range of symptoms. The right leg problem is not unexpected, but the rest is. Aphasia is common after a stroke, but there is no medical evidence on any of the tests that he had one. It is possible that the seizures two weeks in a row are the culprit, but no one is certain. Craig got a chuckle out of stumping the experts. Craig now has a line in his arm so that he can receive antibiotics for the next 8 weeks. We have decided he should stay at University Hospital for rehab and not go to a facility near our home again. I toured the facility in the afternoon, and UH - Hannah House has a rehab floor that includes skilled nursing, and we hope that's where he will go next week. Then he's close to his doctors and the hospital if there are future events. The rehab hospital last Monday did not respond appropriately or fast enough when he got in trouble. So, this latest crisis is passing, but there is still a long road ahead of us. One day at a time. As Craig stabilizes, updates will slow down. I've done my best to keep everyone informed, but the kids keep reminding me that Craig is my first priority and I can't take on being responsible for everyone's anxiety when they don't hear from me. I have noticed though that it helped me to do the updates. I makes me feel connected to all of you and not so alone. Last night I was just too tired, though. We appreciate all the love, support, and prayers. For those of you who can, visitors or calls to Craig are welcome. I won't know room or phone number until later today, but you can always call the main hospital number, 216-844-1000. Mom F and Mom M - Sending flowers now that he is out of ICU is good (University Hospital, 11100 Euclid Avenue, Cleveland OH 44106). Everyone else, please don't...it's too much. Sending flowers to me works, too. Yellow ones and multicolored mixes make me happy (25241 Chatworth Drive, Euclid, OH 44117). I know plants last longer, but then I have to take care of them. Thanks for your understanding. Love, Susanne