Wednesday, July 16, 2008

thank god she is a warrior...

madison picked this in the toy box after winning bingo!

Talked with Dr. Levitt. They have decided to take her off of her TPN & Lipids as she is not really interested in the offer to have clear liquids today. They will pull the "food line" tonight and hope that she will be more interested in jello, juice and water. The x-ray will be repeated in the morning. I got the impression that Dr. Levitt and Pena are both thinking that it will be liquids again tomorrow based on today's x-ray. We will start foods when the x-ray is clear and there is no distention. The plan is that we will stay in the hospital a few days after she starts eating but that he does not want us to leave town until next week - mid to end of the week. It is frustrating as we are stir crazy but Jed and I both agree that leaving before she is ready would be crazy.

Talked a little about what the next few weeks and months will look like for Madison as we try to get to the end of this journey. I will post all of those detail when I have a second. Please continue to pray these next few days as some big milestones will need to happen in order to determine what course we will take from here. I will fill you in on all the details soon.
Pray on for this sweet girl!

It's a "no go" on food...

After the traumatizing PICC sterile change last night.
Every time that they access her PICC we all have to wear masks and gloves because the line goes directly to her heart. They said that if just one person coughed over the line as they change it she could get an infection. Crazy to think about.
last night they took all of the tape off and it was no fun. Took 4 of us to hold her down. I think that at this point it is more the fear of the unknown! She was so tired and sweaty after we were done.

This is what teh PICC looks like before they bandage it all up.

The round disc is where the tubing goes through the skin. the disc is full of antibiotics that keep the area totally clean and sterile.

First liquids since last Tuesday!!

Coloring...passing the time. Isn't she a doll!

hello all.... Just wanted to update you all. We had our x-ray at 7 AM this morning. Got the results back from the nurse practitioner that she was a little distended and that they would not allow food yet. Dr. Levitt oked juice and jello today so we can see how that goes. We should see Dr. Levitt anytime and he will be able to give us a better idea of where we stand. There are allot of people that come through and all seem to have just a little different info. I always just wait and get it straight from Dr. Levitt. I will try to see if he can give me a better idea of what his plans will be for her once she starts eating. Will she have to stick around to make sure that we do not have constipation issues still...ect.

Madison seems to be a little less aggravated and frustrated today. She had a good night sleep. Seems to feel rested. We have already played cards, visited the playroom, read books and she is now sitting on the floor(not sure how she does it after seeing the surg pictures!!) coloring in a great activity book from one of her favorite people in the world, Mrs. Jungles. We are jammin to Hannah Montana and as soon as the clock hits 2 she will inform me that the play room is open again!

Today we had a nice meeting with a gal named Maggie. She is a representative for a new group here at the hospital called Champions. It is a group that helps the hospital through sharing their stories. She came and "interviewed" me and Madison on video camera for about an hour. A really sweet lady and a good chance to share just how thankful we are for Cincinnati Children's and especially Dr. Levitt. I always feel my eyes well up with tears when I talk about him. He has impacted our lives in a way unlike anyone else before. How do you ever say thank you for that.

Jed and I have had several conversations since being here about how we can give back to CCH. We have talked about different ideas... how can we specifically help the colorectal center? maybe for now just sharing our story. there seems to be lots of possibilities coming our way with the Kids Wish Network, possible article in the magazine here and now with Champions. It would bless my soul to be able talk to others that are in the same place we were just a few months ago. I was telling Maggie that as hard as the last few years have been, maybe, just maybe, it better prepared us to share with others who are so desperately looking for answers.

Have you ever been so passionate about something or someone that you want to stand and shout with a megaphone. That is what Jed and I feel for this place and Dr. Levitt. I laughed as I thought about all of the other hospital stays we have had. I always am much is this one gonna cost us! You know that never once has that crossed my mind here. I would sell my car, stop shopping (OUCH!) whatever it took to be here...and then still want to find ways to do more. Maybe I am just in the thick of all of the emotions right now... We will see. We will look for opportunities to share and help where we can!

Thank you to all who once again sent packages! We received another bundle today! The Elliotts, Schlesselmans, Tessendorfs, and Gma & Gpa Smith. She is busy doing crafts from all of the new goodies as we speak now!

We will keep you posted on the food front as we get more info.