Day 11

I happened to check my voice mail today at work and got a message from my dad saying the hospital called Scott this morning and told him Heather was not doing very well. Of course i get that message awhlie after the fact since i don't have cell reception in the hospital. I ran over to St. Joes from my work and happened to run into one of the neurosurgeons who operated on Heather. He is a peds neruosurgeon. I told him that he operated on my sister and he said he knew that and wanted to know how she was doing. I told him i was on my way to find out and he offered to come with me. So nice and comforting to know he was there. He checked her numbers and spoke with other docs and nurses and told us that her Ct from this am looked good. He orderd her drain to be clamped and told me that she had a rough night with high hear rates and agitation so they were diving her lots of sedation. He believed this to be the cause of her lethargy, not any problems with her brain. What a relief.

Later i was paged by Heather's nurse to come to a family meeting (scott and I) with Heather's actual neruosurgeon doctor Ho. He told us that It could be hydrocephalus as Heather's drain was clotted off, or it could just be the progression of her disease, but that she was really weak today. She could talk and understand, but could move less and was having more pain. We discussed our options. We decided to choose between two. Pull out the drain and let they hydrocephalus accumulate and take Heather home to die in the next day or two, or choice number 2, to place a shunt in her brain. THe shunt would function like the drain she has, it would be inside her body and go into her abdominal area where the fluid would be reabsorbed by the body. This would take care of the hydrocephalus or fluid in her brain and then she could go home and woud eventually die from the cancer who knows when. Problem with that is, she won't be able to have the quality of life we hoped the surgery would give her. SHe is too weak to move and she can't eat. We decided to do a repeat cat scan and see what it showed this afternoon after having her shunt clamped today. If it showed hydrocephalus then we would have to pick an option.

Part of me wanted to let her go, she was suffering a lot today. But then when the doctor was trying to unclog the drain, it was causing heather so much pain that she became more alert and was functioning well cognitively. Then i felt like it would be killing a perfectly awake and alert person to just let her go. I was split. I went to talk to Heather as she was in so much pain. She told me she did not want to do this anymore. I asked her what and she said be in pain. I promised her she would not be in pain. She said she wanted to go home. I told her she would get to go home soon. Then i told her i had to talk to her about something tough. I told her that she had to help make a choice. That her cancer was so bad and her brain was not working right that we need to either take out her drain and send her home or put a shunt in. I then told her that if we take out the drain her hydrocephalus will come back and she will die over the next couple of days. I assured her it would be at home and that she would not be in pain. Or she could choose to have the shunt place and drain the fluid to her stomach area and go home. SHe would eventually die still as we could not longer cure or fix her. It was very hard to bring this up but I think since she is congnitively intact periodically that she should be aware and make the decision. She said she knew she was going to die and what would her kids think. I promised her they would be taken care of by all the family members on both sides who were there today. Not to worry about them and to focus on herself and do what is best for Heather and what she wants to do.

My mother and sister were able to have wonderful goodbye conversations with Heather but i had to go back to work so i did not want to be a wreck. Luckily her scan looked good today and showed no hydrocephalus. We ended up not having to make a decision for now, but i am sure there will be plenty of more difficult decisions ahead. She will likely have the drain removed tomorrow and go to the medical floor. Hopefully she can go home this week. What will the plan, i don't know???? That is my next thing to find out tomorrow. How much time, will we have home nurses, how will she get feed at home, will she need a hospital bed etc. So many things to work out! I really have to say what a wonderful family Scott has. They have been so helpful and supportive. You can tell how much they care for Heather. I am so glad she is so loved by them. Thank you Chapmans.