Tuesday, January 25, 2011

He cares about more than just her brain

We have experienced literally every emotion from Monday until now. Monday morning was very difficult for Mary. Her pain was at an all time high, more than any pain that she has felt (including the pain from her hemorrhage) and that is saying a lot. She needed our encouragement to carry on.

The team for the angiogram came many hours earlier than we were prepared for, but that was good. Because she was fasting for the procedure, we were glad to have it over with and not having to dwell on it all day.

The challenge of her having to move from her bed to the transport bed to the angiogram was daunting. Every bump and every touch to her body is painful. So you can try to imagine how strong Mary is. We held her hands and stayed at her side until they literally helped us out of the procedure room.

Mary was almost as fearful of this angiogram as she was the morning of the surgery. She was very concerned that something would go wrong. She felt like she was having to start over and face more challenges from it. They could not sedate her as much and so she had to endure a lot of discomfort and pain.

We waited about two hours and then she was brought back to her room. The neuro radiation doctor, Dr. Farid (from Persia) came to tell us the great news! That the AVM was gone. This is amazing news.

Dr. Farid is finishing up his fellowship here at UCSF. We have been as impressed with him as we are with Dr. Lawton. Dr. Farid has come to see Mary every day since he performed her first angiogram last Thursday. He even worked through the weekend. He has come twice a day since her surgery to see her. He even spent some time talking with Zane about his MCATS coming up and has become very personal with us. He knows Mary's goals in getting through this and as Zane says, "He cares about more than just her brain."

By early afternoon, we were all very concerned (including her nurse Rene) about why after 3 days, the pain meds were not making a dent in her discomfort. She is on amazing meds that work for 90% of similar patients. Rene did some detective work and discovered that there had been a huge oversight: they had not been giving her steroids! This is standard for the first 48-72 hours after brain surgery. It reduces swelling but also provides relief from the pressure and pain.

We had the head of the pharmacy and Dr. Lawton in Mary's room within a few hours and steroids were started. Needless to say, we were pretty upset with this disconnect and because of it, Mary had to suffer far too long.

Steroids brought relief along with a new oral pain med and we noticed that the pain is more tolerable. On a scale from 1-10 her pain has been a 12 since Sunday and now it is about a 9-10.

She enjoyed listening to the Bachelor tonight and imitated every voice on the show! It is ironic because the Bachelorette was on during her last hospital stay. Although she can barely walk to the bathroom and stand to wash her hands or even open her eyes, she is very independent and we are confident she will recover. She does not want us to help her find things, she wants to do it on her own.

She was able to talk with Zane for the first time since he left and she showed a little spunk with him! That was so encouraging.

I forced myself to leave her and stayed at the hotel alone. Brad stayed with her at the hospital. It was a long drive for me and a lonely walk to my room, but I needed to recharge and get some good sleep. I think it is good for her to be apart from me for this short time. It felt so much like the day I had to leave Thomas in the NICU as a preemie.

Of course, within a half-hour of me leaving, she opened both her eyes for the first time! She had an uneventful night with quiet sleep. Many rounds of doctors in the morning. They are urging
her to eat and to work on opening her eyes. She saw a nutritionist today to help with all of that.

Her thighs are very tender and stiff from the angiogram in each leg. And her eyes have been swollen shut since Saturday, which is why they are hard to open. Dr. Farid explained that her surgery was very long and that is why she feels pain all over her entire body.

As Phillip says, she is making 'baby steps-literally.'

Our faith is sustained and our resolve strengthened through your prayers and wishes. We are so grateful for all of you.


  1. These blogs are wonderful because they contain such good news and are so representative of the bond you all have with each other and with Mary. We love you all.

  2. Oh poor Mary. You should ask the hospital to remove from your bill the stronger, more expensive pain meds they were using because they did not start the steroids as part of the regular proceedure.

  3. So sorry that the pain has been so intense. Do they have a tube draining fluid away from the site to help relieve the pressure in the brain? If not, would this help? You are all in our prayers daily. Thank you so much for keeping us updated. Hang in there. One day at a time. You have come sooo far already!!
    Mimi Dedrick

  4. They all sound like very nice people, but sue them anyway. Haha. Just kidding. Kind of. Poor Mary. I can scarcely believe such an "oversight". It makes me cringe.

  5. Mary you are amazing & such a champion in my heart (and in everyone else's). You continue to be in my prayers. I love and adore your family & I know you will come out of this stronger & even more amazing (is that possible?!!!!). Thank heavens for God's ability to bring the right surgeon at the right time, no matter where they are from.