End Of Volume One!

A Treat For The Last Day

Day 17 post transplant...........

We are home, at least at our temporary home. Anna's bed is set up in the living room area so that she can be the center of the universe which of course she already was. This is working well for taking care of her.

Last night as Anna and I drove away from Stanford Hospital in the dark and in the rain we both broke out in tears, a release from all the too much that has been going on. Then we turned onto Welch Road with so much of our life represented there including my OB's office where I learned I was pregnant to Packard Children's Hospital where Anna's health was in the hands of the CF center. What a ......... journey. And then it felt as though we were driving home with a new member of the family, our new lungs. It is like there is a new baby, a new being to learn about and discover.

Anna is doing better each day. She is still weeping on her arms from the excess fluid due to her kidney failure and pred. We have to change gauze dressings regularly to soak up the seep-age. This is annoying as Anna always feels wet. She is peeing more which causes occasional jubulations but it is still a hard recovery. The mood swings from the pred are very difficult as Anna looks for her happiness button that she could access so easily before. Getting used to her new lungs or rather getting used to her old lungs not being there is a process. Sometimes she misses her old lungs and the comfort from the expected and usual. She thinks it so strange to not hear the constant crackle that came with every breath with her worn out CF lungs. The strangely quiet and gentle breath that she has is very odd for her. Many times she says that she does not know how to use them. She feels that she has to learn to breathe again, or for the first time.

After having to be at the hospital this morning at 7:30AM for a blood draw and pic line dressing change we got home by 9AM and have had the entire rest of the day to recalibrate. I jumped back into my pjs and we snuggled in bed to try to watch a movie. Well our attention span was not long. We realized we needed to learn the meds and our schedule better. Being on the transplant meds is no joke. This is what is going to be the vital thing that will help Anna keep her lungs well. She can not miss doses and must learn the regimen by heart. This will not be too hard because she has been doing this type of thing all of her life. It is just all new and our energy has been spent and we are exhausted.

So, we are on our way. We are determined that this kidney situation will turn around and soon she will have happy kidneys again. We are all very grateful and stunned with how difficult the past weeks were. The intensity of this surgery, being in ICU with everyone else in critical care, the need for dialysis, the ups and downs, the confusion from the meds, the enormity of it all overwhelms each of us in our own ways. At least one of our family holiday traditions was upheld last night after we got home. It was the last night of hanukkah and we never had a chance to participate in the lighting of candles in the hospital because we were so constantly involved and busy. So, we lit a candle together last night and with our ritual each of us spoke about our gratitude for our family and how we stuck together without a hitch supporting each other and making our way through. We are all stronger for it I suppose. Never want to do these things, they are so tough, but we saw how well we worked together and it was all for love, love for our wonderful Anna who WILL surmount the issues with healing in front of her.

It is here that I feel "volume one" of my blog comes to a close. We waited, we received and now we go on to heal and enter a new life, "volume 2". It is a turning point. I want to continue to share about the process as it still helps me to stop and open the computer and write with the key board. I can think about the day and choose elements that I wish to share or emphasize. I am grateful to all of my friends, family and others who have been interested in our story. I mostly hope that you are moved to support the need for more organ donor awareness and have a greater appreciation for those that make up this miracle including the health professionals. I must say and the family agrees, the nurses, docs, rts, everyone at Stanford were fabulous and we trusted them so much. We are very grateful as Doug says, to be alive in this time when we have the knowledge and science to make this possible and for where we live to have this care so available to us.

So, the next volume will be about, "Go Anna Go, Go Anna Go........."