2007 May 2 O'Neill Update

Hello to all. Thank you so much for your comments and postings. Brian and I read through them tonight. It was great for him to hear from so many of you. He thought this whole concept was really cool and now he can come down and check whenever he wants as he knows where the computer is and what the website is.

It was great to see the kids again and some neighbours. It was very strange to leave and realize that I am not going back. It makes me very sad to leave as we loved it there and it is not the terms on which we intended to leave. It is actually heart-breaking. We will miss it dearly and I know it devastates Brian to leave this portion of his career like this. He truly was loving what he was doing. The boys are excited about moving. Gavin is finishing school this week. Grant finished today. Everyone hugged him and he said, "mom, some girl even KISSED me." Mom said it was very cute. I think Mom will be ready to go home, too. Dad arrives today to help mom for a couple of days and then help get the kids to Missouri on Saturday. I think the "honeymoon is over" with mom and the boys and they are starting to show some of their true colors with some sassy mouth and some naughty behaviour. They will be at mom's for about a week. We will leave here probably Wed or Thursday next week and get Brian settled back in Peoria for a couple of days before we bring in the cavalry.

I arrived back in California yesterday morning. Doctor Edwards came by and said he is pleased with the plan drawn up for the cyberknife treatments. However, there has been a delay in getting the ATO (Arsenic Tri Oxide) and the cyberknife will probably not be until Friday, Monday and Tuesday. SO, we are delayed right now. We don't know if it will happen those days or not, but we should know tomorrow, Thursday.

Brian's rehab is going great. He has already surpassed his PT goals - he is walking about 150 feet with a cane and supervision. He ascended and descended a flight of stairs today with supervision. In PT and Occupational Therapy (OT), they did a lot of family training. They showed me where to stand and how to stand and what to help Brian with to maintain stability. They showed us how to get his chair on and off curbs. We looked at pics of the house and went through where problem areas were going to be and how to handle certain issues. I feel better about home now, but still have concerns about how to handle everything when real life with kids hits. Brian's hand is getting stronger. He is opening his fingers better and able to clumsily grab some smaller objects and turn them over and back. His arm and hand have a long way to go, though. His stability is getting really good and speech continues to come along well. He carries on conversations, but has to talk slowly and really think about certain words or say them lots of times to get them out properly. His speech therapy is migrating to more concentration, attention span, problem solving skills - crossword puzzles, word games, deciphering codes, etc. It is fun to watch and participate and learn in all of this. he plan is still to discharge Brian on Tuesday, May 8. Brian will continue with out-patient rehab when we arrive in Illinois.

Jan is out of the hospital again. On Friday, she had an angiogram that was normal, so, they got her heart rate down lower, still in A-Fib, and released her on Saturday. On Sunday morning at 2:00, several hours after she was discharged, she was bleeding from where her angiogram had been and wouldn't stop. She went back to the ER and was immediately admitted. They could not get an IV started, she was losing blood fast, it was leaking back into the groin/leg area where the angiogram was performed, and her blood pressure started to drop. They called in the rapid response team and they finally got her stabilized and in the midst of all that, she went back in normal Sinus Rhythm. So, we are teasing her that when her heart misbehaves, she just needs a near death experience to get back into sinus rhythm. Turns out the problem was that her blood was too thin from the blood thinners and they had to spend the last couple days getting it to a healthy level. She was discharged yesterday and is doing a good job taking it easy and being smart about everything.

Anyway, I am trying to take care of myself, too. Last night, I finally slept for about 10 hours. I haven't slept more than about 6 hours (and many nights as little as 3 or 4 hours) since Brian was admitted. I stayed in Brian's room and was even able to sleep in the hospital. I was exhausted and needed rest like I didn't even realize. It got up and went for a run this morning in the light misty rain of Palo Alto on the Stanford campus. It was pretty nice.

Brian is starting to go a bit stir crazy. He wants out - it is like being trapped. He is sick of the food and we are both sick of the cafeteria as an alternative. We get outside for a bit every day, but it is still just sitting around. I called him out on his crabbiness today and said, "Brian, even when we are home, we have to come up with things to occupy and keep you busy that can be done sitting around." We determined that is his biggest issue right now. He is tired of sitting and would like to walk more, but only walks about 20 minutes a day in PT. He is going to talk to his physical therapist tomorrow to see if we can get clearance to walk around the halls a bit more for Brian to gain some more strength.

That's it for now. Probably won't write again soon unless Brian's cyberknife changes.

KEEP BELIEVING

Brian, Angie, Gavin and Grant O'Neill