Sunday, May 6, 2007

Second Opinion Brings Hope and Direction

Late last week, my dear friends from far away came to visit us at the hospital. PFATTies Christy, Sandy and Kitty were so sweet in bringing gifts for Brianna and me. They suggested I show more photos of Brianna on the blog, so here's one I thought was sweet. We laughed, cried and shared, and then Kitty treated us to lunch at a local restaurant. I still can't believe they made the trip coming as far away as Oregon and Southern California, then onto Sacramento, and finally driving from there to Palo Alto. I am so glad they did.

Zinnie, another sweet PFATTie (remember, it stands for Primitive Folk Art Tea & Talk on eBay) couldn't make the drive out with them, but included the nicest snow globe gift of a fairy. Sarah, another artist in the group, sent along one of her beautiful collages with all sorts of fun items for Brianna. She will love all of them when she awakes from her long sleep in the ICU. Brianna had said to me before, "Mom, I'm so glad you have such nice friends."

These warm, caring women also told me that a collection has been started for Brianna in the group. As I told them, the words "thank you" just don't seem enough. But I am truly grateful and feel so blessed to have such kind, loving people in our lives. I hugged them for a long time.

My sister also came out and stayed with me for several days after their visit. It was nice having her here with me. She stayed by Brianna's bedside massaging her legs and feet and her back. We are trying to maintain a little of Brianna's range of motion, by bending her legs and flexing her feet and toes. You can imagine the physical therapy she will need to go through after this to get some of her strength and motor abilities back.

All of these visits enabled my parents to head back to their home in Reno for a few days to take care of some business. And it allowed John time to be home with Trevor and to take care of some things there.

I hadn't gotten to the blog in a few days because so much happened late in the week. In addition to the wonderful visits, John and I went through the process of deciding whether Brianna should get another central line. Before she got to the ICU, she had no reason to get an IV. She has a central line near her left clavicle. But when she had surgery the first time and now that she's in the ICU, two IVs were started in her arms. Week by week, each would go bad and couldn't be used. And even through she is making baby steps of progress, the nurses needed more access to her veins. Each time she is poked for another IV, there is a risk of infection. The last IV she had to have started was in her foot.

Each of these additional IVs are called peripheral IVs of PIVs. They differ from a central line in that they only feed into the peripheral veins. Her central line feeds into a large vein in near her heart. She couldn't undergo that procedure again, but there is a process known as a PICC line, or peripheral intravenous central cather. There were so many pros and cons to this procedure it really made me nervous, but in the long run I knew Brianna needed it.

A PICC line is a long catheter that goes into a vein just above the elbow and is pushed up along the vein until it sits in the large vein near her heart. The scary part was that an ultrasound helps locate the vein and then the catheter is fed by feel up and around her arm pit and onto the chest area. When it's complete, an x-ray is taken to ensure that is placed correctly. Most of the time this procedure is done under radiographic floroscopy, in other words, a camera an x-ray machine are used during the whole process to ensure not problems arise. But because Brianna can't be moved, and the mobile floroscopy machine wouldn't fit in her room, it couldn't be used. The PICC nurse assured us that it was done this way all the time, but you can imagine we still were very nervous. Thankfully, everything went well and she won't have to poked for more IV access.

Then on Friday, Philip Anshutz, who owns the newspaper that John works for called with a very generous offer of flying out a premiere pulmonologist to help consult on Brianna's case. This touched our hearts. The hospital that is known to be number one in the nation in pulmonology, or the study and care of lungs, is the National Jewish Hospital in Denver. So it was arranged that he would come out yesterday to review Brianna's care. What he had to say encouraged us, but also left us anxious.

Dr. Martin Zamora heads up the lung transplant unit at NJH. He reviewed Brianna's x-rays and CTs from back before her surgery up to the most recent x-ray that morning. He also talked with the ICU attending physician, asked us some questions and then discussed his thoughts.

Basically, he said that we're going to come to a point when she cannot be weaned off the ventilator. Right now, the ventilator is providing positive pressure in her chest. It's expanding her lungs and allowing the CO2 to escape. It's as if her lungs are two balloons that are continually being inflated and deflated, only super fast because it's oscillating.

She has a chest tube in her right lung area, and some of the pressure of the ventilator is escaping through a hole in her right lung. We suspected this hole some weeks ago. But what will happen is that air pressure will follow the path of least resistance. And what he fears will happen is that we will get to a point on the ventilator when the oxygen being pumped in will not entirely inflate her left good lung. Instead, it will escape out the chest tube and leave part of her lung collapsed.

His suggestion is to give her a few more days of weaning. Get her to a lower number on the pressure meter. Then, use two different ventilators for each lung, that way you can change the pressure in each according to their need. However, he said this can be a very risky procedure because she has to go off the current ventilator AND they need to intubate her again with two tubes. He warned us that she could go into cardiac arrest. Of course this was not what we wanted to hear. He said it would have to be done very quickly in order to keep her oxygen level high. Then you can get into a situation where the tubes are pointing to each other and setting each other off rather than pointing towards the lungs.

Our doctors talked about this dual ventilation early on, but said it was impossible because she was too unstable. That was when she first got to the ICU. Two weeks later, she is at 28 on the MAP, or mean air pressure. If she can be weaned down to 24, this could most likely be a little less risky. He did tell us the fact that she's made progress going from 36 on the MAP down to 28 is good, and he's optimistic that she will come through. She young, strong and her organs are function as they should, except obvioulsy, her lungs. He also said that the docs here are doing exactly what he would do in this case. It's always nice to hear that from a specialist on the outside.

His consult gave us some more insight, but I feel like we're coming to a crossroads again and they always scare me. I'm praying that her progress continues until she is at a safer level before undergoing such a procedure. In fact, she may not have to undergo it at all. But with what Brianna's dealing with in her right lung, it looks like we will have to go through with this at some point. And the sooner she is out of the ICU the better. Her skin is holding up, but one of her ears is getting pretty badly blistered from laying on it a lot. They're looking at ways of correcting this as well.

Please continue to pray for us and for Brianna's lungs to heal. Many of you have sent cards to her in our old room, but now we are in room 2513 in the PICU. I have not opened some of these, so that she and I can open them together. I appreciate all of you who have sent them. Again, we pray not only for Brianna's total healing, but for the doctors and all her medical care team to know just what should be done to get her well.


Kitty Forseth said...

Hello my Dear Friend,

What a wonderful thing for John's boss to do.. and what a great thing for you to hear that second opinion. At least you now feel more confident that the picu Drs. are doing what they should be doing.

There may well be a crossroads coming.. but please know that we are all here waiting to hold you, Brianna, John and Trevor up. We must have faith.

Prayers, hugs and kisses coming your way... See you soon :),


Kingfisher Farm said...

Iva, it is a blessing, what kindness to get another consultation! I am praying for your strength to be buoyed by unseen angel wings, and that Brianna is still dreaming wondrous dreams. The ponies are up for another magical ride, they wish to take Brianna to another magical place, where Le Cadre Noir horses dance! (the famed black horse troup, the national calvary of France)Hugs, Pam

Soft in the Head said...

Wonderful news Iva! There is so much kindness it the world...The one true spirit is the human spirit! Know there are many of us sending support, love and strength...Take care, P2

Kitty Forseth said...

I forgot to say.. what a beautiful picture of Brianna :)!

Christy said...

Huge hugs to you both and I am so happy that a 2nd opinion was brought in... Just for the sheer fact of hearing confirmation that everything is being done. Sam and I had such a wonderful trip seeing you and Miss Kitty... Those Pomitinis were like First Aid!!! Much love! Christy

Stacy said...

It is such a blessing to have so many wonderful friends to help you through this journey.
We continue to keep you all in our thoughts and prayers.
We also pray that God will guide all those who are helping Brianna to be well.
God bless and keep you.

Emily said...

We're praying for you and your daughter. You're a strong woman and heart goes out you and your family.

Sam I Am said...

Clapping to the news of the second opinion.. now you can rest a little easier knowing they are on the right track :)
We'll keep on sending up prayers for all of you and the docs...
Being able to hug you and pass on hugs from all the pfatties was soooo great.. we all can't wait for the Homecoming Celebration when Brianna gets we'l have tons more hugs for her too :)
Pomegranite martini's rimmed with sugar and cinnamon were definately what the doctor ordered ;) Laughing with you and our most 'colorful' conversations we had during lunch will be etched into my happy memories for a very long time :)
We love you Iva..and Brianna!!!!

penpalgal said...

How generous of John's boss to help Brianna out in such wonderful way. Blessings to both gentlemen, one for providing the way, the other for providing his knowledge and expertise.

I'm so glad you got to see some fellow pfatties and know they brought their own special sunshine with them.

Please know you all are, and have been, in my thoughts and prayers.


Lisa said...

That is great to know you have been on the right track in taking care of Brianna. Stay strong on your journey to recovery...sooner the better. God Bless.

Kitty Forseth said...

The martinis certainly WERE good medicine, as were the hugs and the laughter!! I think the restaurant staff must have wondered what on earth could be so funny!! I get warm fuzzies every time I think of all the fun things we laughed about.

Hugs to you girlfriend.. kiss and hug that beautiful girl for us!!


sweetthingsbyarlene said...

Hi need to take care of yourself too...fear and anxiety will take a toll on your mind and body...go out in the fresh air...I am praying for you and your wonderful family...Hugs...Prayers...thoughts...and luv...Arlene and Family