Saturday, and I Love All Of Your Messages

This is a dialysis machine that does the job of our little kidneys.

Day 12 post transplant...........

It is much better being here than in the ICU but Anna thinks that home will even be better. You think? Dr. Weill thinks she will go home around Wednesday. This has encouraged Anna. She so wants to be in a better environment. I do too but I still like the professional care and am not quite ready to take this all on. By the time she is home she should have no more IVs, the pic line will be out and hopefully her skin will not longer be weeping her extra fluids.

Anna had a difficult night last night and Casey stayed with her. He has been so wonderful and protective. She said the nurse was great it just is that the pred causes so much restlessness and agitation. It is a wonder drug that has saved Anna's life before but it does indeed have its drawbacks and that is mostly what she is feeling with these emotional mood swings and bad dreams. Dr. Weill has lowered her dose in the evening so we hope tonight will be more peaceful for her.

The drugs for transplant are hard. Not only that, it is all that you can imagine or not even imagine. To be graphic, your chest is opened, your life giving organs of breath cut out and then the DNA of another is place back in, sewed up and........... the mind must go crazy with all that unbelievable stimuli. Why did the body loose its lungs that have been working so hard to breathe and where in the ........... did these new ones come from? What the......????? Anna is feeling all of this as the body seeks to readjust to everything so different including her dear kidneys shutting down because of the shock to the system. The human body and its ability to heal is so remarkable. We are trusting the miracle of life to find its equilibrium. We also trust these wonderful doctors and nurses who do this everyday and Anna's great friends who have been here already and are thriving.........

Anna keeps me hopping from one need to the other so I have very little time to answer emails but I am reading them. I am grateful that you are so positive about being part of the journey even though it is a roller coaster and hard. Maybe from following some of Anna's story you can appreciate the magnitude of transplant.

It is important to understand that the recipients and the donors are all heroes and have given up the ultimate together to create miracles........... So hard, so full of danger and grief and so incredible. Thank you.........

Another part of our story............. As you know, Sara is working in the CF research lab here at Stanford and goes to the lung transplants to pick up the old lungs for research in the lab. She has been in the OR to do this task a number of times now but now after Anna's transplant she has gotten to know Dr. Steve, the fellow surgeon who has watched over Anna. A few nights ago there were two more lung transplants. Sara needed to retrieve the lungs from the first surgery and ended up hanging out in the OR with Dr. Steve and was invited to view the lung removal. This is a remarkable set of circumstances for Sara and the rest of our family. Imagine this....... others in the OR noticed her name on her badge and said, "We transplanted your sister? And you work with transplant? Amazing." It is another one of those interesting intricacies of all of this. As the mom, it blows my mind that Sara can witness all of this with such composure. She will make an incredible doctor one day.........

A Much Better Place Now

Hi Everyone, Finally Out Of There!

Still Day 11 post transplant............

A sigh of relief. We are now out of ICU in a quiet private room with a wonderful bright window. Doing much better today.


Going to my new room.............

Something normal for once.......

"I look like a fat kid who wants cake!"

Enjoying the escape.......

Time with Dad........

The Sun Will Come Out Tomorrow

Doing A Little Jig.......
That Day Will Come Soon!

Day 11 post transplant.....

This morning Anna is doing better. She was never able to move out of the ICU yesterday because there were no rooms to move to. There is one today though. Right now she is having a 3 1/2 hour dialysis here in ICU before she moves. She was able to sleep in fits and starts last night. That is a very good thing. She says that she is doing better. The weeping of fluid from her arms and chest has slowed and her mind is very present even though she is very tired. She ate eggs, toast with jam, cereal and milk and OJ for breakfast. That is the Anna I know. So looks like this is a better day.

Must say her dad was so wonderful last night. After a difficult long day in the ICU with all of Anna's issues he looked in her eyes and said, "We are going to do this and we are going to help you. You have to power through and we will support you. We will not give up or leave you." That is what someone in her position needs to hear. There is a reason you are evaluated for transplant. If you do not have a strong support system you will not be accepted. It is crucial and it would be impossible to get through without loving constant support. Yes Doug, We Will Get There! Also, Doug remembers how much Anna loved the musical Annie when she was little and the the song, The Sun Will Come Out Tomorrow! And when it does, we will all be dancing that little jig.......

Update on Thursday

I wish it was spring 2011 and we were done with this tough stuff
and walking in the wildflowers....

Day 10 post transplant.......

Anna's nurse called me this morning about 8:45. Anna was wondering when I was coming. The ICU visiting hours begin at 10AM. I promised I would be there. We just spent two hours together. Her brain is very, very much better but she said, "this is so hard, the hardest thing I have ever done." Finally I was able to cry. Anna has always allowed me to be able to have any and all of my feelings. We have always been so honest with each other. The tears helped me a lot. Unfortunately, they did not fix the problems she is having. Only time will do that.

I wish there really was magic and an incantation to make it all go away. You mothers know what I mean. You can not stand to see the suffering of your child. It is unbearable at times. The best we can do is comfort, love and allow what ever process is in place to move forward unveiling their own story of life with pain and with love. She agreed that the thing we would like most is to close our eyes, fall asleep and then wake up in about 1 month to all the tough stuff being over.

It helps me to be able to wash her hair with a shampoo cap kit made just for hospital stays and then run my fingers through her cute curls making sure there are no snarls. I also love to help the nurses bring new blankets and attend to all the comfort needs. Anna wanted to walk some so we held hands and I walked backward and she towards me like a dance with gentle steps across the room then to turn and return. This was very tiring for her but she can not stand being still for so long.

A room has been ordered for her to leave the ICU today. It just takes time for them to make the shift. Soon hopefully we will be in a private room again. Keep up the positive thoughts and prayers. If we are truly One in mind and spirit it can only help when so many aspects of the One focus good thoughts on this young woman who has fought so hard to live her life and had the courage to under go this incredible surgery and life transformation. She so deserves this opportunity I just wish it was not so very, very difficult.

A Day Healing

Anna and Casey, Napping

This afternoon Anna is getting another dialysis. At least she was with her Casey. We are all so tired. Doug and I were invited to nap at the Home Tel across from the hospital by Stephanie, Barbara and Steve. We had such a restful nap. Anna will be in ICU this evening and will be moved out tomorrow (we hope). She is aware of everything and thinking and asking appropriate questions with a few inappropriate ones and with some fog and a little strangeness. While we were with her she remembered on her own pulling out her lines while she was having a dream. Her memory is amazing. We thought she would not know what happened. So, we are moving over this hump. We hope that tomorrow is even a better day.

Just Saw Anna

I just spent an hour with our dearest one. Her mind is still confused but she is far more present and it was such a relief to see her back to communicating. Her favorite nurses are pouring love on her and taking such good care. I arrived as the team was rounding outside of her room. The plan is to get her mind clear with cutting back on the pred and no more adavan, etc...... She will continue dialysis until her kidneys wake up. Come on kidneys! They are as positive as ever and we are moving forward after our bump in the road. Can't wait until my bright, intelligent Anna is all the way back to clear mind.

The Past Two Days..............

Today is Hanukkah

Day 9 post transplant..........

The past two days have been difficult as I said. We are hopefully on a new track now with Anna back in the ICU until we iron out the problems. Anna's confusion was intense due to the mixture of drugs, and surgery. She is very sensitive and was really concerned before transplant that this would happen to her. It is not uncommon and will pass but it caused her to pull out her central lines in the night. This was caught by a smart nurse who had set a bed alarm and so it appeared worse than it was. I had spent the night with her so this was quite dramatic for me. We are now putting this event in the past and moving forward as it is one of those "bumps in the road" that we are told happens.

After recalibrating yesterday with new lines and drug adjustments it was decided more minute to minute care was important for Anna so she went back in the ICU last night. The doctors continue to be positive about Anna's final outcome. We are constantly told there are rough patches that happen but they deal with them and she will get better. Our Anna Banana is a dramatic one and this event is no exception. Her first time in the hospital 28 years ago was an intense marathon that she managed to conquer and be named a miracle child. She will do it again this time.

We have to do the best we can to care for ourselves, take turns and power through. Today will be about being back in the ICU waiting room with scheduled 1/2 hour visits. We will fill the rest of the time with walks on campus. And once again, we are offered such wonderful words of encouragement and love. We can not respond to everyone and all messages. We just do not have much to give out. So, here I can say, thank you so much.

Yesterday on my way out to finally get sleep after 36 hours of hospital duty I saw our friend Bruce who told me that Hanukkah starts today and there will be candle lighting in the atrium everyday at 4PM. Sounds like a very nice break in the hospital routine for us. We will try to be there and hopefully in a few days Anna will be able to attend with us as well. The hospital is now decorated for the holidays. We hope to have some fun this holiday season with our family mix of Hanukkah and Christmas. Can not wait to be baking cookies............ We need some of the sublime with the absurd and fun with the difficult and light with the dark.