Thursday, May 17, 2007

Weaning Continues and Anxiety Increases


Another picture that Brianna took of herself. I love all these little poses. This photo really made me think about my dad and how he teases Brianna by calling her Angelina Jolie. In this picture I can really see the resemblance.

Brianna continues to stay strong. She has been through so much, I cannot even imagine where she is getting her strength and courage. All I can say is your prayers are helping. She is now down to 15 on the mean airway pressure (MAP) and they have begun the process of weaning her off the nitric oxide. This gas allows the oxygen to bind to the red blood cells in the lungs, providing better oxygenation. She has been at 10 percent for a long time and they have weaned her down to one percent in the last two days. It is supposed to be one of the harder things to be weaned from.

She is holding her own, but is certainly not where she should be as far as her oxygen saturation. A small sensor on the tip of her finger measures the amount of oxygen getting to the extremeties. You and I would run about 97 or 98. At this point, she's at 91 and they've had to increase the amount of oxygen she's getting through the ventilatotor to 75 percent. Remember, anything over 60% for a length of time can be toxic to the lungs. So to say my anxiety level is high is an understatement.

Today is the first day since my cold began Saturday that I've been able to spend some time in her room without having to limit it to 10 minutes. I sit in the room and obsess over the numbers blinking on the monitor just above her bed. It's very easy to do when they stare you in the face in bright flourescent colors and beep with every beat of her heart, change of her blood pressure and change in her O2 saturation. I try not to obsess, and the only way I can really cope is by leaving and either sitting outside in the sun or on one of the couches in the waiting areas in the hospital hallways. Just getting busy helps too, like exercising her legs and flexing her feet so she won't lose too much range of motion in her limbs.

I also know it takes her some time to adjust to every little change on her ventilator settings. However, as long as she is in the ICU I'm going to have a hard time.

Last week, I met with another mother whose teenage son had a bone marrow transplant late last year and who had many complications. It's funny how she and I both shared similar experiences with certain residents and doctors - good and bad. It's also good to know that even though they were in the hospital for five months, he is now home, still having to take lots of medications, but getting better.

She was the one who asked about Brianna's transplant. Funny how that has taken a back seast now that she's in the ICU. So speaking of her bone marrow transplant, her white count today was 4.8, her hemoglobin was 11 and she's getting a unit of platelets a day because she's undergoing so much in the ICU.

We have another patient care meeting today and I'm going to mention a few things. Most importantly we want to know the plan even though it all depends on Brianna. Hopefully CT scans will be able to happen soon after she's on the conventional ventilator so we can see what's going on in her lungs.

Another reason for our anxiety is her medical insurance. Something we don't think about is the lifetime limit. For Brianna, it was $2 million and we thought that would easily cover her transplant. At this point the charges are more than $3 million, but of course that doesn't reflect the negotiated rates which are often half. So about two weeks ago I got a call from the hospital's financial counselor who said she's concerned we're going to max out the insurance benefit. She was right. We're getting it lined up, but it's one more stress that we all don't need.

Please continue your prayers for us and send us more healing thoughts. We still have a ways to go before she's off the ventiltor all together. And I won't feel comfortable until I know that her lungs are healed and she doesn't need it anymore. Actually, I won't feel comfortable until she's home with us, all this transplant stuff is behind us and she's living her life as a young adult.

Thank you for all your prayers and lovely emails. We need them so.

13 comments:

Soft in the Head said...

Hang in there Iva! Everyday that goes by is another day closer to rhe goal. I think of you and your family often and send all the positive energy I can gather. Pam

Kitty Forseth said...

Sending my love, and lots of huggggggggggggssssssssss... Brianna's headed in the right direction!!! I wish I could hug you in person, but I've been ill since last Friday with the flu. You don't need this bug, believe me!

Hope to see you really soon :).

Love,

Kitty

Kingfisher Farm said...

I cant think of a more fitting cause for the spending of a few million dollars than this! Dont we hear all the time about the millions of dollars of waste in government?? Dont worry about this Iva, let that administrator negotiate it! I am so happy you were able to speak to that boy's mother! No one better knows what you are enduring! HUGS! Pam

Sam I Am said...

wow...she REALLY does look like Angelina in that pic!!!
what a beautiful daughter you have Iva :) :) :)
The eyes are the window to the soul..and hers show strength!!!!!
xoxoxoxoxooxoxxo
sam

Dana said...

Iva ... my own anxiety began to increase just reading your entry from yesterday. I simply can not imagine ... but please know ... my prayers are with you!!!

Stay strong ... get those little breaks and fresh air when you can ... and God Bless and Keep you!

xo
Dana

Christy said...

Through those soulful eyes, rests a tiger, for sure! Brianna is making improvement and that is the only thing we will focus on today. I'm glad your cold is better Iva... Have you had your hugs today? {{{{IVA}}}} Love, Christy

chelseatroper said...

Thank you so much for continuing these blogs. It means so much for me to have a connection to Brianna still. Brianna looks beautiful. I have some funny pictures that I'll send to your e-mail.

sweetthingsbyarlene said...

Good evening Iva...the picture of Brianna is so beautiful..sending Prayers and lots of luv...Hugs-----Arlene

Disgusted Cats said...

There's a little cafe table and chairs waiting on the Champs Elysees with your names on it, Brianna and Iva! And we will all want a postcard when you go to Paris! Hugs,
Joanne

jojo said...

Dear Iva and Brianna and family,
Praying for you contantly,
can't wait for the day when you are back home enjoying yourself.
sending all my love, jo

jojo said...

ps...Wenchie Iva I think Dad is right!!! My whole family says she looks like Angelina!!!! Just a beautiful picture!!! I liked the one in the space suits too that was reallly funny!!! I smile every time I think of it....hugs jojo

Carolee said...

So glad to hear Brianna's making progress!! Still sending up those prayers for her, and for all of you....(((hugs))) ~ Carolee

vintage*palette said...

Thinking of you all and praying for Brianna. You are such a strong woman Iva! All the Pfatties and Ehagers are praying for you all!

Hugs! ~Lori