Sunday, October 12, 2008

Well now?

Today was spent worrying about her pee out put. This morning we were concerned because she was really not giving us enough urine. Her body is just working so hard to fight off infection that it may not be relaxing and performing right. Oh dear I told Ava could you just give us ONE stress free day? Huh?

She is still pretty heavily sedated. She received her fourth blood transfusion tonight since her recent repair. Her body can't seem to build up the count fast enough. They tell us this is pretty typical after surgery. We are begining to know why we went to CHOP now. I can't remember but one time that infection came into play there. It seems every day we are concerned over another "infection" plaguing her little body. I worry constantly. I know it may be a coincidence but I guess I am just tired of constantly having to double check everything. I have to question whether things are being done right and if they will hurt her or help her.

I do love the staff here. Dr. Volk and Dr. Moreland are both wonderful doctors that just happen to be woman. They really listen and soak up all the information or imput little ol me gives them. Our nurses are also great.

Her IV expired in her foot so they had to reinsert a new one in her left arm. Her picc line they put in this last Friday went in her right thigh. They are weaning her vent setting slow. Right now they are at 40% O2 Peep- 10 SIMU rate- 30 and her PC above peep is 18.

They also started her on Dilaudid and are thinking of giving her dopamine to help with her urine output. Perhaps tricking her body into thinking it has to go pee pee.

Okat so let's please pray we have a restful night and that tomorrow we only see steps ahead. Thanks for your support!



A simple being said...

terri i wonder if the cath being blocked right after her surgery has anything to do with her out put now? just wondering if there could be swelling or a mucusplug in her tube from the temorary blockage, she may even have gotten a uti from it but since medicated you wouldn't know, this sort of thing happened to anneleise at birth after they straight cathed her (they ultrasounded her bladder to see if it was full, then put it in took it right out)her putput improved that day. just a thought, like youdon't have enough on your mind.

Elizabeth said...


This is the time of year for infection too. (Sigh.) I hope that it is peaceful tonight and that little miss starts peeing - good that her vent settings have gone down.

With thoughts, prayers and LUNG FUNCTION chants,

And pee chants too!

CureSMA4Stella said...

Hello Terri,
Just wanted you to know that we are thinking of you guys and praying that Ava makes a full recovery very soon! I pray that everything continues to get better and better in the PICU and that you are home with your bubbly little Ava again!
Hugs from Sarah and Stella in Pella

Anonymous said...

Terri, we are all praying for Ava. She is on one of my friend's prayer list at her church. My coworkers are also praying for her. God hears her name often. Soon she will be home playing and dancing again. Arlene (Wyatt's grandmom)

Pam said...

Hi Terri,

My name is Pam and I just happened upon your blog. My son Rhett has had a CHD as well. He had the hole at birth, but the intestines did not get stuck up in to the chest until he was 16 months old. This was a huge blessing for us, as he had a major heart defect that he had to deal with at birth.

When Rhett had his hernia surgery in January of 2007, it was very hard on us. We almost lost him. Not due to the surgery but due to the fact that Dilaudid is a drug that is not used very often. His nurse gave him 10x more than he should have had.

Please be careful when little Ava gets the dilaudid. It is not used in children that often, and the dosage info on the bottle is a little screwy. I know you don't need to be scared right now, we have been through pretty much everything imaginable, and I know how scary this time is. I really do. But had someone informed me of the facts about Dilaudid before they put Rhett on it, I would have never given the okay for it.

I hope that she starts peeing soon. I can't tell you how many times we have prayed for pee. Too many to count.

We will be thinking of you and praying for Ava. She is an amazing little girl. She will get better. You just keep double checking everything that they do for her, and if you don't like something speak up and tell them your concerns.

I am sure the Dr's and Nurses at our childrens hospital hate me, but I don't care. It's my son and I know what's best for him.

Hoping that those lungs start working really good again.