Signs of More Wakefulness and Pain

Here is a picture of Trevor and Brianna with their grandparents. My mom and dad live in Reno and are close enough to come and help us. It's a nice reminder of our visit to their new home during the holidays last year.

Brianna continues to have good days. I am so thankful. They continue to wean her from the ventilator and are increasing her "sprints," by making her do more of the work breathing. She really has done well with during them. They are four times a day for about two hours each.

As the good days add up, the doctors think more of extubation and where she needs to be with her sedation. The tricky part is ensuring patients are comfortable, but awake enough that they will breath on their own once the tube is pulled out. They've really come down on her sedation and starting yesterday, it's very apparent Brianna is not totally out of it. She opens her eyes now and looks almost confused, but also like she's trying to concentrate on not gagging. Today, she gagged twice and even threw up mostly bile, because of the sensation of the tube. She also winces when you move her or touch certain areas that are sore or painful - practically her entire body!

I explain that she's in the intensive care unit and that the tube will be coming out soon. I don't know if it helps. I do know she is not comfortable.

When I mentioned to one of the nurses that it's a fine balance between coming down on the sedation and making sure the kids don't gag, her response was "that's a good problem to have." She is so right. Brianna has come so far, but we have a long, long way to go still. I thought it was funny when one of the BMT doctors actually thought Brianna would be awake enough to write notes and communicate and not gag. I kept thinking, "Right...Brianna would never be okay with that." She is not into the medical field and she has stressed to us early in her stay that this experience has not made her interested in becoming a nurse or doctor. Quite the opposite.

Also, she has a lot of extra fluid on her and they're trying to get that under control with the diuretics. But as the PICU attending doctor Sarah Kache believes, once Brianna's out of the PICU and off the diuretic IV drip, she's going to have to manage extra fluid and not have it affect her lungs. Thankfully, it hasn't so far and my hope is that she is either even or a little negative with her fluid balance by tomorrow morning. I think that's what the doctors are aiming for too.

A new concern is that she may have another chicken pox re-activation. The troubling part is that it's on the other side of her body, completely opposite from the original infection. As you may know, the chicken pox virus, once healed, retreats to a specific nerve bundle along the spinal cord. If you have a break out of shingles, it will only appear on once side of the spine along those nerve endings. The doctors cultured Brianna's skin today and the test results should be back tomorrow to be certain. The infectious disease doctors think it's just skin break down, which seems to be another issue she's dealing with right now.

Because she's been laying in bed for six weeks now, areas of her scalp have sores from where her head touches the mattress. We move her head to relieve the pressure on those areas, but new ones crop up. So the sooner she is up, extubated, and moving, the better.

We have gotten so many gifts and cards. I have to say a special thank you to my dear friend Debbie for the beautiful gift she sent, and to Pixie Patch, Jenny, for the special piece she sent. Also, I need to send a heartfelt thank you to Stacy. You are so kind and generous, words just don't begin to express how appreciative we are. As I've said to many of you, it's not easy for us to be on the receiving end when we've always been in the giving mode.

So many of you have sent Brianna such wonderful things, from cards and gifts, to pictures and emails. Each is a special gem that we will cherish for a long time. Although it is very lonely here at times, it is so nice to know we have a huge family of friends and relatives who are praying and thinking about us always.

God bless.....Iva