Another Delay in Brianna's Road to Wellness

Brianna (right) is fooling around with her friend Chelsea, who sent these photos to me along with a very sweet comment on the blog. I can't help but cry when I see her having fun with her dear friend, and pray for that day to come again.

Brianna was supposed to be put on a conventional ventilator, but that did not happen. When my mom and I left the hospital yesterday around 6:30 pm, Brianna's ventilator settings were 19 on the MAP, her oxygen was 50 percent and her oxygen saturation was 95. This morning when we walked into the room, her MAP was back up to 20, the oxygen they were giving was 60 percent and her O2 saturation dropped to 89. I was not expecting this at all.

Also, last night they had to put a new naso-gastro tube up through Brianna's nose to her stomach because the one she had got clogged up with a pill they had ground down. When they put the medication in the tube, it turned to a thick gel and wouldn't move. About this time, Brianna started to "wake up" and became very agitated. When she wakes up and is not on the paralytic, she fights the osciallating ventilator. It's not a natural way of breathing, and if she tries to breathe against it, her oxygen saturation drops. We watched it happen a few days ago when her O2 saturation went from 98 to 89 because she was moving her chest up and down and trying to breathe normally.

So why all the drop in her overall lung status? This morning the doctors think it's too much fluid over the past four days, a possible bacterial infection and her will to breathe against the oscillator. (Remember, the oscillator provides 600 tiny breaths a minute sort of like hyper ventilating. Obviously, much different than the regular rise and fall of the chest about 20 times average per minute.)

Over the last few days they allowed her to have a little more fluid to make her kidneys better. Her kidneys started to object on Friday, when her creatnine and Urea Nitrogen (BUN) crept up to a high level. Those numbers indicate how well the kidneys are functioning and when those numbers are high, it means the kidneys are not passing fluid waste as well as they should. It also means that many of the drugs that can damage the kidneys are in her system longer and at higher levels.

The way to heal the kidneys is to give them more fluid. Brianna's been on a Lasix drip ever since she's been in the PICU, and they added another diuretic every 12 hours. To say she was dry is an understatment. Almost every day she would wind up negative on her fluid balance.

During the past four days, she was 500 milliliters positive every day. So over that time, she was two liters positive. Every day I'd walk in and ask how her fluid balance was for the 24-hour period and they'd tell me she was 500 positive, I'd wonder when it would start to affect her lungs. Supposedly, that time came this morning.

In addition, the doctors still feel that she got some sort of ventilator related bacterial infection. They've given her three new antibiotics on top of the Vancomyecin, which kills staph infections. The hope is that these drugs combined with more diuretics should clear her lungs more and get her back on track to a conventional ventilator.

I feel like there is a recorder in my head and it keeps replaying some of these same conversations I've had with the doctors. Before we got to the PICU, Brianna's x-ray started to look bad and the doctors thought it was too much fluid. But that wasn't it and she continued to worsen until she needed to go to the PICU.

They have been testing her C-reactive protein levels in her blood, which are a measure of inflammation in the body. It was 19 on Saturday and has decreased to 16 today. The doctors take this as a sign that whatever she has, it's getting better. But I continue to ask why has she declined in her respiratory status?

I know I have to be thankful for the major gains Brianna has made. And she has made them - going from 36 on the amount of pressure being used to force oxygen into her lungs down to 20 now. But I can't help but be a little gun shy about any signs that she's having more trouble with her lungs. And here we are again with the doctors not really knowing what is causing this and her condition isn't getting better.

I also realize that maybe I've just been here too long. It is now 100 days of hospitalization and one-third of that has been spent with Brianna in the PICU. I think my stamina and strength are almost depleted and I'm wallowing in doubt, fear and anxiety.

I know our call for prayers has been long and loud, but please continue. This has been so difficult for us, and I'm sure it's been difficult for you to read every other day too. And I'm afraid the journey will continue to be long and bumpy. But, we are grateful to all of you who continue to lift us up with your comments to the blog and emails. We are blessed with family, friends and those I have not met - friends of friends - who have sent their well wishes and prayers. We are blessed to have so many people cheering for us.

I pray that tomorrow will bring better news abour her x-rays.