Thursday, July 16, 2009

Kylee Update #5

Hello Everyone,

Well, since I’m writing you, you may be guessing we’re still in Seattle. If that was your guess, you’re right. All along I had a feeling we’d be staying, but I couldn’t figure out what would keep us here. I even called Alaska last night and worked out a deal with them to get us home early and I stayed up till midnight packing because we were 99% sure we’d be heading home after the appt since we couldn’t figure out a reason to stay. No such luck.

We got to the appointment to have Ginger, the Urology nurse, ask how things were going and we replied that Kylee was still leaking and our frustrations with that. She then told us if Kylee was still leaking significantly, then Dr. Grady wanted to do another minor surgery on Monday and add more d-flux… which is what she’s had done four times before. The d-flux is what fills in the bladder neck and keeps her from leaking… at least it’s supposed to. Dr. Grady wants to give it one more shot while we’re up here since we’re so far away and wouldn’t be back for a while. He really wants to send her home dry.

So, that all said, Kylee is scheduled for minor day surgery on Monday late morning/early afternoon. We don’t know the time yet. Please keep Kylee in your prayers again that this will do the trick. We’ll definitely go home dry, but we want her to stay dry. We already know the bladder can hold more and pray that it is big enough to keep from backing up in the kidneys. We just now want to keep her dry for, at least, four hours. That will eventually be her scheduled time to cath. We hope it will all work cooperatively.

Kylee wants to let you all know she is feeling great and is already telling everyone here she’s about to have her 11th surgery. We went to the hospital today to take some things back and see our friend Tommy Ludlow, who just had surgery. While there, we ran into a nurse Kylee had the day after her surgery. She was shocked when she saw Kylee. She was amazed at how great she looked. She didn’t even recognize her at first. There was also another lady from the playroom that couldn’t believe it was the same girl. This lady had brought Kylee a beginning weaver to make a scarf the day after her surgery at Kylee’s request. When the lady showed up Kylee was feeling quite awful and the lady thought there is no way this little girl is doing any weaving… but she left the weaver anyway. Kylee, over the past week and a half, weaved almost an 8 ft scarf. That lady was impressed and amazed… both at the scarf and how great Kylee looked. I asked Dr. Grady today if he’d seen anyone heal this fast from a surgery… he paused and said… not the surgery Kylee just had. He is also very impressed with Kylee. I just keep telling him it’s all the prayers and positive thoughts sent our way. He says he believes that works.

Thanks again everyone for the continued support. It is GREATLY appreciated. Just fyi, we are still scheduled to return, very late, next Tuesday, July 21st.

With much gratitude,
Rebecca, Kylee & Art

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