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Saturday, January 9, 2010

Another Rough Day and a New Plan

Yesterday was another rough day. They were not able to get Avery's fever down, and after deliberation by the doctors, and the consult of a infectious disease doctor, it was decided that the likely cause of the fever was a hospital acquired staff infection that likely originated from the shunt. So, a quick decision was made that the shunt needed to be taken out, which meant Avery's third brain surgery in one week. It was a quick procedure, and she was recovering well last night. When the shunt is not in, they have to put in an external drainage tube that works with a machine to keep the level of fluid in her brain where it should be. Jeremy and Jenn really hate this because it requires that she be laid flat most of the time. It must be clamped off to have her in any other position and can only be clamped off for 15 to 20 minutes at a time, and only a couple times a day. This means that she can only be held twice a day. So, on top of everything else they can't even hold her as much as they would like to, so as Jenn would say, "that's just irritating." The bright spot of the day was that she smiled and even giggled when they were playing Peek-a-Boo with her. She is opening her eyes a lot more and looking for her mommy and daddy.
The new plan is to get Avery transferred to St. Jude's Hospital in Memphis, Tennessee. This is the best hospital at treating pediatric brain cancer. While the children's hospital in Kansas City is a good hospital, they have only treated one kiddo under the age of one with the type of cancer that Avery has. They just do not have the level of expertise to make Jenn and Jeremy comfortable with the treatment they would provide. They are working with St. Jude's to coordinate the transfer. An exact timeline is not known at this point given the events of yesterday. I know that they would like to get her there sometime next week.
It would be great if you all could pray specifically that the shunt was the problem and that this infection will resolve with antibiotics and that they are able to get her moved to St. Jude's quickly.


  1. I'm not sure if this is the place or not to put this but I'm trying to get the word out and I can see they have a lot of followers. Jeremy and Jen are in our thoughts all the time. So some of us decided to have a Texas hold'em tournament benefit for them. In May we had Doelyn our son in the hospital for a week and I know it is hard when you are not working and with them transferring her to Tenn. I can't imagine. So Feb. 14 we are having it at the Minden Legion I'm not sure on a time. But any help with snacks or donations or just coming and playing I can't think of any other way to spend my Valentine's Day than to help them.
    Thanks Amy

  2. If Avery has the spunk and determination of parents I'm sure she will fight this with all she has! I hope the transfer goes well and she is well and home as soon as possibel! We are always thinking of her and you two.

  3. We know Avery is a tough cookie and she will fight this no matter what. We will miss her dearly and hope that the transfer to Tenn. goes well. You have some wonderful support that loves all of you. We are anxious to help out. The t-shirts are awesome by the way! We can’t wait to get some.
    We think and pray for you often.

    Matt, Jeanne, Rylie & Reagan Smith