Friday, June 20, 2008

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...............

14 comments:

Valerie said...

I'm glad that you found someone to talk to that could help! It sounds like things are going okay and that you can handle them! You are such an inspiration. Love you!

Vaeh's Blog said...

Stable. She sounds stable & that's a great thing! The fact that the doc was shocked when you asked about palliative care is also a good sign. They aren't thinking about that!

Glad you were able to get some rest. Its amazing how much a little sleep & something to eat can make you feel more human.

Will be praying that all continues to remain stable & only improving from there, as well as that they are able to get her chest closed on Sunday! She's such a little fighter & has come to far to go anywhere but home now! Please let me know if you need anything & know that we're always praying!

The Hood's said...

Hollie, we are so sorry for your struggles and stress over this last week. Please know that we are thinking and praying for you and your sweet little family. Good luck. We will keep our fingers crossed that she can be closed on Sunday! Never lose faith!
Gary, Camille, Sam and Alex Hood

Wendy said...

Hollie,

I am thinking of you and praying for your precious little girl!

Heart Hugs,

Wendy (& Emma, too!)
www.caringbridge.org/visit/emmanicole

Isabella said...

I was happy to get on here and see that things are stable. I have to agree about the pallative team. We also see a pallative team in Kansas City and we love them. I freaked out the first time someone mentioned to us about seeing them, but then after I talked with them, I wondered how we got along without them. They are such great advocates for our children.
Thoughts and Prayers Always
Megan

Vanessa said...

I'm so glad you talked to this group of people. Seems like they will help tremendously.

carolyn q said...

I hope that when you read my comment it is after a good nights sleep and that Elaina also had a restful night as her body is fighting to overcome this puzzeling infection.
I wish they would have had a Pallative Team when I had Hope, they sound amazing and I have heard many great things about Tony Sherwood! So you have the right team on your side.
Please know that I am thinking of you and keeping your family in my prayers.
Heart Hugs,
Carolyn

My Three Sons said...

I'm glad to hear that she is stable. She is so little and just like you said, she just needs to heal in her own time. I will keep praying that tomorrow she is a little better. Baby steps!!

Good for you to talk to someone. That's what they are there for. Try to get some more rest tonight.

Kaci

Mike & Rebecca said...

I'm still hanging on every post, praying that Elaina's recovery continues to improve. I can only imagine the tremendous stress you are dealing with right now. I'm glad to hear that you are finding the comfort of the Palliative Care Team.

With many prayers,
Mike & Family
IHH-VP

ssbiasutti said...

Dear Hollie,
I have been watching Elaina's blog everyday but I was clueless how to leave you a message. Elaina sounds amazing. She is putting up a valiant fight just like my little Stella. All these heart kids as so amazing. I just want you to know that you are a wonderful mom! I also would love to meet you. I will come and track you down in the next week. My husband is going back to Italy to take care of his mom so I will be all alone. Stella is stable right now and is okay. I will look at your blog everyday to keep updated on Elaina's progress. Let me know if there is anything I can do to help. It sounds like you are really going through it right now. Best of luck. You are in my thoughts and prayers. Sara Biasutti

Pam said...

I hope things went well last night. Everytime I go to come down and see you somebody walks in, or Rhett wakes up. He has been such a wild maniac the last two days.

We are going home this morning, but we will be back up here for appointments, and I will come see you for sure.

Until then, you guys will be in our thoughts and prayers, and I will be clinging on to updates.

I hope the fevers go away soon, and that you can realx and breathe a little. I can't help but think that that surgery was the little miracle that she needed to start getting better.

I hope that shower was warm....mine have been freezing the last twice I have taken them.

I think of you all the time, and pray that she gets her chest closed on Sunday.

Please let me know if you need anything. Even if you just want to talk. I am just a phone call away, and when you get home, I am just a small drive away.

Lot's of ((HUGS)) for both of you.

Pam and Rhett

Djinni said...

You have a lot of people on your side including me. I am glad you are getting the support you need through the Pallative Team as well as several others. You are a special and wonderful Mom, Elaina is blessed to have you as her mom and advocate. Remember to take Care of yourself, and know that I am here if you need someone to talk to. Heart Hugs, Djinni

Gourley Family said...

I am sorry that things are so rough right now. We will continue to pray for your family and Elaina. What a special and strong little girl. I know this is all hard right now, but know that there are so many that have your back! Take care of yourself too. You need rest and nourishment too! I am glad you talked to someone. Talking and sharing is healing. A new perspective is helpful too. Give sweet Elaina hugs and kisses from us!
Hugs and prayers,
Emily and Mike

Mimi said...

Go take that hot shower, put on some comfy socks and drink some nice tea. You owe it to yourself!