Tuesday, May 15, 2007

More Weaning from the Ventilator

Even though Brianna was to have a quiet weekend of rest, it was a little hectic. She continued at 20 on the ventilator's mean air pressure (MAP), and struggled a bit to keep the carbon dioxide at a normal level. But she managed. However, when she was turned on her stomach Saturday, she must have gotten naucous.

The doctors decided that she wasn't tolerating the naso-gastro tube feeding of a nutritional fluid, so they stopped the feeding. Then, the nurses found that she had thrown up a bit when suctioning the tube. The doctors then decided to put in a tube that bypasses the stomach and sits in the small intestine. They tried to put it in and they had a difficult time. Two x-rays were taken to see if it was in place and it wasn't. So poor Brianna went through the procedure and they had to stop. She got tears in her eyes while they were putting the new tube up through her nose and then down to her GI tract even though she was sedated. Thankfully, they gave her a little more medication.

My mom and dad stayed and made sure Brianna was kept comfortable all weekend. They did a great job alerting the nurses that Brianna had tears. I am so fortunate to have such supportive parents. They sat with Brianna's all weekend, so that I could go home and spend some time with Trevor and John for Mother's Day. Here's a picture of our handsome son. I miss him so much when I'm away for so long.

It was very nice to be home for most of Saturday and Sunday. I was able to leave the hospital Saturday late morning, stop by the store to buy a couple more pair of jeans (I got down to one that fit me okay because I just haven't shopped much), and then headed home. We saw a very funny movie Saturday night, Hot Fuzz. It was part comedy and part murder mystery and had such a great twist. There are a few gross parts, so I wouldn't take little kids. It is an English movie and very different than what's out there. It was a nice escape. Leaving the theater I thought about Brianna.

Going home was bittersweet. I kept thinking about Brianna, wondering how she was doing and missing her. We all thought about her while at home. I was able to grab a few of my art supplies and a journal to try to do a little journaling while I wait for her lungs to recover. And I thought about all those Mothers out there who are celebrating the day with their children and those like us who cannot for the time being.

But over the weekend, I felt a cold coming on. My throat was sore and I was sneezing. Everyone has to wear a mask while in her room. We just can't take any chances. But John and I were with her Sunday night and then left. I made sure I used the hand sanitizer a lot while there. But on Monday morning, our doctor said I shouldn't go in her room. I pray that the time I spent with her on Sunday night didn't cause any harm. She can't afford to catch anything.

Yesterday was a little hard for me, since I couldn't be in the room with her. But I know it was for a good reason. I called the nurse several times throughout the day and talked with our nurse practitioner and the doctors in the morning. Then I left the hospital, just because I didn't want to get anyone else sick in the hospital. I spent the day in my hotel room, working on our hospital bills and talking with the insurance company.

Brianna made more progress yesterday. She got down to 18 on the MAP and now the doctors want her to get down to 16 on the MAP before switching ventilators. Again, this is a PICU attending physician thing. Which ever one is on will determine how far we go down on the MAP. This week, it's Dr. Cornfield who we really respect. He's the medical director of the PICU and a pulmonologist and did the very first bronchoscopy Brianna had. So he's followed us for more than a month and we have asked for his opinion on all that has happened with her lungs.

This morning my cold symptoms have subsided, but I still feel it. So I can be in her room for 10 minutes at a time, with a double mask and after washing my hands up to my elbows. Our wonderful primary care nurse Presley is there today and I know Brianna is in good hands. She is such a great nurse and we feel so lucky to have gotten her early on and for her to sign on as Brianna's primary. Brianna is now down to 17 on the MAP, so every day she continus to be weaned. I thank God for this.

We still have a long way to go to get Brianna well though. Now we will see when she will be put on a conventional ventilator and then be able to be moved for CT scans on her right lung. Another Patient Care Meeting is scheduled for this Thrusday and we'll see if the doctors think it's time to get surgeons involved. Our hope and prayer now is that Brianna won't have to go through another traumatic lung surgery to fix the hole in her lung and the remaining fungal infection. We suspect she may though. This would mean at least another three weeks in the pediatric ICU.

I talk to Brianna and tell her that this is her marathon and she's winning so far. I tell her that she is doing a great job and to continue fighting. We are waiting for her and are here for her, so stay strong. I tell her she can do this and not to give up the fight.

Your prayers and wishes of healing, courage and strength have helped Brianna and our family get through this. Tomorrow will be week 12 after her transplant, which means we will have been here for 94 days. We all can't believe it, and yet it seems like it has been a lifetime. Please continue to pray and send positive thoughts. We haven't reached our destination yet and it will be a while before we do.


Kingfisher Farm said...

Iva, Brianna is so strong, and so are you, you've BOTH been running a marathon for 93 days, no wonder you have a cold! You do have a handsome son! You have been blessed. I pray Brianna's discomfort has subsided and that she is on another magical dream journey in her magical chariot, flying with the pink and aqua ponies doing her bidding, to the most wonderful places! I keep praying that she is doing better day by day, continuing to be taking her baby steps to get weaned off this machine! HUGS! Pam

Kitty Forseth said...

Good morning Iva!

You are such a wonderful Mother, it seems that you always know the right things to say to Brianna :). She IS winning, and she has several cheerleaders urging her on the entire way.

Trevor, you are a cutie pie! I hope to meet you one of these days :).

I pray that Brianna's progress continues.. and that you are over your cold soon!

I keep having visions of Brianna running and playing, in full health. She's amazing, she CAN do this!

Hugs and kisses to you all,


Christy said...

She is a VERY strong girl, and she IS WINNING this marathon! I am so happy that each day is a small victory, and I pray that she continues on this road to wellness.
Big Hugs, Christy

P.S. This strength will only help her carry her bags in Paris.. be sure to tell her! LOL

Disgusted Cats said...

Iva, take care of yourself, now!!!!
Get plenty of fluids. All that stress has to be tough on your immune system.
My, what a good-looking son you've got. I'm sure he appreciated having you home at Mother's Day.
It's a blessing to have wonderful, supportive parents.
Know we think about you all, and continue to send our good thoughts and wishes!
Love, Joanne

Sam I Am said...

I've been thinking about you and your family all weekend.. and im still sending up prayers thru-out the day for all of you...
Brianna is so very fortunate to have such a wonderful, caring, LOVING Family..fighting the fight along with her! You are all so amazingly STRONG!!!
We love you..and keep fighting Bri.. and Iva.. please rest as much as you can.. xoxoxoxoxoxoxoxo

Soft in the Head said...

Everyday is another success story...such a winning spirit! We are all pulling for you and send much love and support. Take care, Pam

Judith Weber said...

Dear Iva,
You sure have two beautiful children. Trevor is a handsome young man. I'm glad you were able to spend some time at home with John and him.
Brianna is a fine runner and continues to hold her own in this marathon. Tom and I are rooting for all the way.
Take care of yourself.
Love, Judy

mewette said...

Oh Iva, my sweet friend, what can I say that hasn't been said so much..Prayers, love, support, good wishes, strength... my family sends it all to you, Brianna and your family.My heart goes out to you for all you are going thru..You are a wonderful and strong Mother and you should feel proud..In the end your healthy daughter will make all those hard memories fade and it will draw you and your family so much closer. My prayers will continue as I know "He" is hearing them:)
Love, hugs & blessings,

Stephanie Coop, said...

Iva I have come to know you through this blog. I am praying daily for Brianna and your family. As others have said 'You are a great Mom" i don't know you but I feel like I do. Your children are both adorable from the pictures you've posted. HOpe you have more energy soon!

Lori said...

Iva, I just wanted to let you know that I am praying for your sweet daughter and your entire family. I have worked as an RN for twenty years and I DO believe in healing miracles and have been witness to countless of them. I posted your link on my blog this morning in the hopes that more people will hear of your story and more people will be praying for the recovery of your precious one. God be with you.

Dana said...

Dear Iva & Family,

I came to see if there had been any updates on Brianna's condition. Reading your post ... I can't help but cry for you all. Both tears of joy for the progress and yet my heart just aches for you ... I just can not wrap my mind around what you must be going through right now. Our continued prayers for Brianna's health and recovery -- strength, peace & patience for you and your family as you wait. Trevor is a handsome young man ... I'm so happy for you all that you were able to have a little time away to spend with just your husband and son. You have very special parents to sit with and watch over Brianna for you.

In His Care ...