4:30 monday afternoon report

Dear Loved Ones,
Today has been interesting! Terry came at 9 as expected and did her normal blood draw, changed the IV dressing, assessed Nan and had me call the doctor. Nan was quite ill while she was here so she got the full brunt of the vomiting. A plan emerged slowly as we talked to Dr. Patel. He wanted nan to go to an emergency room and get an NG tube down her nose to drain the stomach of the fluids backing up. Nan flatly refused saying to me she would rather die than have a NG tube. Unknow to others is a night in an ER somewhere and a Swedish nurse who decided she would put a NG tube into Nan. She crammed again and again and it kept coming out Nan's mouth until a doctor nearby told her to stop it, so she left in a huff muttering how she never failed... So Nan remembers that terrible experience and shudders at the thought of it being done. So I had her talk directly to Dr. Patel and a different plan was arrived at. I am to call him tomorrow morning at 7 or so through the office, he is setting up an appointment with a gastrol internalist (spelling and names are probably wrong) and a small tube will be inserted directly into Nan's stomach. It will extend ourside her body and can be capped off. This tube will drain any fluids backing up which are presently causing the throwing up. He feels strongly that a bowel or intestine is kinked and causing blockage. This procedure will allow the body to relax and perhaps unkink itself in a few days but in the immediate it will relieve the throwing up completely. It will be done using a microscope and could be an outpatient procedure, at the most they might keep Nan one night. We are rather excited about this step forward. He explained that none of the nausea meds will deal with a backed up GI tract since the fluids have to go somewhere. He was very kind and gentle with nan and with me explaining what his thinking was and why we needed to do this. He was willing for her to be hospitalized but does not see the need at this point. This means Nan can feel better almost immediatelly and we are very excited about that. Of course we do have some really good stuff here to sell now!!

Another point of interest, Terry bathed Nan and changed the gown and urged her to get on the scales. Two weeks ago it was 149 and today it is 135, much much closer to her normal weight of about 130. That was very good new and it means that when we want to we can use the extra hydration without fear of hurting her.

So tomorrow is now the day to watch and pray about. It seems God has been planning this all along, go to the shower and enjoy family, then get this procedure to help relieve the fluids buildup. Now to get the material together to present to Novartis to get the AMN107 on compassionate basis. One more task for busy timmy.

Terry also handled the fact that we were out of the only drug which helps her sleep now, Adavan and arranged a shipment to our front door at 12:30 with a new supply of what we needed. By 1 pm Nan was asleep and has been asleep every since, its now 4:45. You see they doubled her dosage from .25 to .5 every 3 to 4 hours and sleep has come easily to her.

I am working in our little office which is a wall away from where Nan is sleeping so I can hear her every move and whimper. ARt has been keeping me company and Nikki checked in too. Its sort of hard to plan future events or appointments when things keep changing but I am so thankful that I have this job and not a 8 to 5 job. This way I can be with Nan much more and be a help to her.

Please pray that God will guide tomorrow, I always get a little nervous when Dr. says it is a simple procedure, even a cave man could do it, so we need God's blessing and guidance.

Sending love and I loved every word people wrote in today on the blog. When I read those messages I immediatelly think of the people writing and put myself there with them as they write. Thank you friends, I have checked for messages a dozen times today and every time there was a new one, very precious indeed.

Love

tim and nan