Dear OneLove Family,
I have not known what to write to update you until now. And , as usual, get some coffee or a beer and get comfy cause there is a lot of explaining to do. Let’s start with the reassurance that Dai is stable, having been home now for 6 weeks. In the hospital, he did not go for more than a few days without having one of those episodes,which came fast and furious. Sometimes they got under control quickly and sometimes they continued all day on and off. Sometimes they were not so severe and sometimes they were life threatening. Mae and I were so anxious to get him out of the hospital and also fearful about how we would manage these incredibly serious problems at home. The two immediate short term goals were to keep him infection free and to keep him free of the episodes so we would not have to 911 him back to yet another hospital. Praise God, he has not had an episode in 6 weeks. He had only one the day after he got home, which I got under control in about 3 hours intent on not sending him to ER. My older sister, who is a nurse, was opposed to our bringing him home and asked Ming if he (or we) thought two untrained women could give him the level of care that he would get in a nursing home with trained professionals. Ming said “Yes!” He had no doubt that it was the only right thing for Dai. After four months in the same hospital because of the inability to control these horrible episodes, Dai was SO over hospitals.
When Dai came home it was to a lovely, bright, handicap accessable apartment that is less than one minute from Mae’s house. He was obviously relieved, and rested well for the first time without stressing about where he was. He was aware of everything going on around him and had a peace about him every time he woke up.
Here is the thing about family taking care of someone they dearly love. We watched Dai every day and knew every look on his face, every sign of how he was and what was going on with him. He was never alone. Mae has such a connection that she knows how he is whether she is with him or not. A few nights after we got home she was here to check on him after her boys were in bed and so I went to sleep. She came in to wake me at 3:00 am because she had spent the last 3 hours trying to massage muscle cramps from his legs. They were so severe that we could see the muscles raised up from his thighs and his whole body was rigid and his face in pain. I gave him the medicine that would treat an episode and we continued to massage him until he finally relaxed. Then we started giving him a mix of potassium, calcium and magnesium three times a day to try to avoid muscle cramps. That was what we would give the boys when they played basketball for too long or something that would throw their electrolites off and cause them to have muscle cramps. Pretty basic knowledge for anyone with an athlete in the house. It is almost inconcievable that it could be that simple that his severe muscle spasms would trigger full blown episodes and have the origin of them go unnoticed for four months in the hospital. But when I looked back on his medical records, one of the diagnosis listed was Hypomagnesemia. Low magnesium levels. Wouldn’t that be a stupid thing to die of?? And, yes, the Autonomic Dysreflexia can go on for life and does kill. Within a few minutes of whatever pain triggers the episodes Dai’s vitals would double. His BP would go as much as from 120/75 to 260/200, pulse from 80 to160, respiration from 20 to 55, body temp would shoot up and so on. So he still gets his calcium, potassium and magnesium daily along with massaging and physical therapy. And by the grace of God and Mae picking up on what was causing his pain we hope that he will never go through that nightmare of pain again.
Thank all of you for your continued prayers for all of us. Dai is beating the odds again and again and it has to be all of your prayers and the love going to him and on around.
Gina posted that I tried out the oxygen chamber. We were going to do several trial runs with me or someone else in it before we tried it on Dai. I didn’t have the heart, after all of the hopes that we had for it, to tell you how that went. First let me say that it seems to be ready now. However, when I got in it for an hour, it made me sick for two days. It even made the gal in the room with me ill. We called the Dr who had sold it to us and he said that it was new equipment and we should run it several times until the odor of new heated plastic went away. I have turned it on daily and now it seems to be fine. We are planning to practice getting Dai in it tomorrow without turning it on and I will go inside again at least a few times before we turn on the pressure with him in it. Then we expect that it will do exactly what we all hope it will do for him. Please pray for that.
One other increasing fear that I didn’t want to lay on you all was that even with all the complications in the hospitals, Dai still would occasionally speak to me or Mae or his friends and he would try to move regularly when we asked him to. When the surgery was done to replace his bone flap,the surgeon came out and said that his brain had fused with the tissue covering it and that he had to cut part of the brain away from the skin and tissue covering it. I wasn’t sure what that meant but a surgery is a surgery so you need some time to heal from it. I kept waiting for Dai to start speaking and moving again but it wasn’t happening. I knew something was wrong and had changed and kept trying to get him to do any of the things that he was doing before. He didn’t. I didn’t talk to Mae about it, didn’t talk to Gina, didn’t know how on earth to blog the kind of panic that was increasing daily.
Then last week my wonderful friend in the apt next to me (who I will tell you about later) was over with Mae and I watching a movie. I had really been pushing Dai for a couple of days to do SOMETHING to work with us. I had repeatedly asked him to move just a finger. Nothing. Then Stephanie (my neighbor) commented on how tight he was squeezing her hand. Mae said that he had also been squeezing her hand on the other side for at least half an hour. I grabbed his hand from Stephanie and he gripped mine hard. I got my face in his face and he was looking very intense. Then he tried to lunge forward. I told him that if he wanted to sit up he could and he could work into whatever he wanted to do. Mae leaned him forward and he sat very straight, looking so intense for a long time. I asked him if he would start working with us again and he blinked a definative “Yes.”
There is a different feel is the room now. The mountain man is back and ready to start to fight again for the recovery he has earned and we have all prayed for.
Please expect regular posts from me and the siblings from now on. I never stopped thinking of all of you, missing you and thanking God for you. It is almost a year since this journey started. You are family to me and all of us and we love you. Sorry it took this long to post. I really didn’t want to throw this all out to you when all I felt was panic. I know that you all love him too. Blessings to all of you and yours.
There is more to tell you about, but it is 6 am and I will save the rest for another day (that is another day SOON).
ONELOVE ALWAYS…Mom J and Chi
btw Lately, whenever I go to the chatroom, it is empty. I really do think it is so cool to go in and find someone there. It is usually someone from another country which is so new to me. Computers are really amazing. Love it.

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