Hello Everyone,
Well, here we are 10 weeks after Chelsea was admitted to the hospital and we are STILL here. She went home for a couple of days on the 11th of Aug. and returned on Friday the 14. The shunt failed and a new one was installed on the 16th. She came out of surgery vomiting and had terrible head pain which continued for the next 11 day until Thur Aug. 24th. She had nothing to eat (G-tube feeding) for over a week because she could not stop vomiting and heaving. The GI docs came to rule out any problems there. Finally the Neuro team externalized the 2nd shunt to make sure that there wasn't a blockage and after 36 hours there was no improvement. Thur. morning they told us that they had come to the conclusion that the residule tumor was the cause of her problem of pain and vomiting. I couldn't accept that this was what here future was going to be. I felt that this was due to something else. My idea was that she might be reacting to all the drugs that they were giving her to try to control the symptoms as these drugs have the standard side effects of headaches, nausea, and vomiting. The senior resident said they would check into this possibility. Instead of waiting any longer for them to go through the channels and discussions with the neuro-surgeon, I went over to her neuro-surgeons office and told my thoughts to Dr. Beckers nurse. She said she has had extreme reactions to certain drugs and that she also felt that this could be the problem. After she called Dr. Becker he discontinued all her meds except Tylenol and 12.5 mg of Phenagren (1/4 the reg dose) for nausea. Within hours she began to improve. It has now been 48 hours and she has had no pain, nausea, or vomiting. They think she is just very sensitive to most drugs and will have to be careful of what she is given.
She now goes back into surgery on Mon. Aug 28 to have the shunt tubing interalized. If all goes well we hope to be able to go home by Thurs. Dr. B has decided to go ahead and have her radiation started as soon as possible as he wants to try to reduce or at least stop the growth of what was left of the tumor. She will come back for an appointment to have a face mask made and the following week start the treatments. There will be 30 treatments over a 6 week period. She and I will stay at the hotel across the street Mon-Fri during this time and go home on the weekends. They will set up her home therapy (PT, OT, and SP) to be done there at the hotel. The hotel is connected to the UCLA hospital which makes it very conveinent for us.
We are keeping our fingers crossed and looking forward getting home for at least a week before she starts the treatments.
Just thought I'd send out this update. Thanks again for the thoughts and prayers.
