Friday Happenings

There's not too much going on so far today. Elaina is continuing to be fairly stable. She's still having small fevers, and this morning's lab work showed an elevated white count, so it looks like some kind of infection could be looming. Since she's been on antibiotics for several days already they are hoping that once identified they can treat it quickly. They are still talking about closing her chest on Sunday, but she needs to get rid of lots of fluid before that can happen. She's been on Lasix since her surgery, and today they started her on Diruel too. She's already starting to pee a little more, so hopefully we're on our way towards a closed chest! Her saturations have been good today, so that's happy, but her lungs are about the same. The upper part of her right lung is still collapsed, and there is debate about what to do to help her out with it because there is not much blood flow to that part of her lung. This is due in part to her small vessels and is part of her pulmonary disease. I've been told that she will never truly have healthy lungs. Otherwise, she's still on the paralytics and heavily sedated. Basically, I'm in watch and wait mode (aka: hovering nervously at the beside).

I did get some good sleep last night, and I'm preparing myself to go to bed early tonight. So, I asked to talk to the Palliative Care Team today. I was talking with one of my other heart Mommy friends, Jessica, and she and her husband have been meeting with Palliative Care. Jessica said that it has really helped her deal with the stresses of having a sick child and thought that it would probably help any family that is dealing with chronic health issues. Since I think that I fall into that group (LOL) I asked my social worker about it. In order to meet with the team, you have to have a referral from one of the doctors. Well, I think I really freaked out one of Elaina's doctors, because she thought that meant that I'd given up hope! I guess there is a perception that Palliative Care works only with families that are faced with the death of their child. In reality, they are a support system for families dealing with chronic illness. The mission statement in the pamphlet they gave me states that they are "an interdisciplinary team that helps children with life-threatening illnesses and their families find comfort, support and hope." They came to Elaina's bed space here in the PICU and talked to me for a little while this morning. They really helped me to put some things into perspective and gave me some suggestions for dealing with the somewhat insurmountable stress that I'm feeling right now. I have always been a person that needs to talk through my problems, so having a "professional" ear to listen really seemed to help. So, thanks Jessica! I am really glad that I talked with them today and would highly recommend it to other moms and dads. We are going to continue meeting so that I can talk through my fears of getting this little one home safe and sound, as well as how to cope with it all once she's there. My spirits are a little higher tonight, thanks in part to the loving support that has been shown to me through this blog and probably because I actually slept last night!
Well, I'm getting kicked out of the PICU for shift change in a few minutes, so I need to pack things up. I think I'm going to go take a long hot shower...............