10-24-09

Hi all,

All our blessings to day 1st to start with... we have such awesome friends and family being so very supportive. Joshua is feeling much better and enjoying so much needed time with his mawmaw and pawpaw at the deer lease this weekend. Kylie is in very good sprits and mood. Josh got to work a full day today. Kylie was blessed with an amazing home bound teacher that with in 1 hour of meeting with teachers, she headed to the hospital with a bag of blessings for Kylie. She got tons of hand made cards from her school mates, teachers, past teachers, and lots of COOL Giddens Goodies!! All the cards had pigs, poems, prayers, and such kind innocent words on it she cried through out reading them. The home bound teacher is going to be such a blessing. Kylie <3's>

Well after much waiting we saw the asst. to the surgeon tonight about 7. She checked Kylie out and we all have notice today her swelling got worse and at the bottom of the swelling she started bruising. Nurse said that's deep tissue bruising. When she leans over the shunt is sticking out more. So here is the plan the best i can explain it. It is not easy to follow so please post questions and i will do my best to answer them. The surgeon will be her in the morning around 10-12 and will make the final decision of what kind of surgery we will be doing .. here are the options

1. Leak repair- go in and if there is a leak, repair it. It could be leaking the site of the shunt in the spinal cord or the tube which drain the fluid in to the abdomen. This is the leaser of the surgeries and the one we are praying for. which would be causing the fluid to be collecting and cause the swelling.

2. Shunt revision - If when they open her up they find the shunt is not working - being that it is a mechanical device there is a chance it may not be working which is causing the swelling due to high pressure.They would replace the shunt with a new one but the same kind. This would be starting over in her healing process. Not the worst option but not the best.

3. Lumbar Drain - This is where they would go in and remove the shunt and put in a external drain. this would drain in to a bag they would gage the amount and pressure of the cerebral spinal fluid. This would stay in for 2-3 weeks and then be removed and replaced with a shunt, that be decided on per what the drain showed in pressure and the amount. for example she has a medium flow value now that keeps her pressure between 8-10% - they would adjust that as per what the drain results would be. Negatives on this would be she would have to stay in the hospital while the drain was in, this would require 2 surgeries, high risk of infection with drain. Positive we would have the perfect pressure value for her. This would be done for the following reason; If when they get in there the shunt is working properly and there is no leak but there is fluid build up. This would mean the shunt could not keep up with the amount fluid being drained off and is causing swelling in spinal cord. This is obviously not the quickest option but we only want what is best not the quickest.

We will not have any "say so" in this decision really, so please pray for clarity and discernment for us and the doctors. If you think of any questions we should ask please send them to my face book or email asap. This is hard and tiring for us and our minds are far from clear. So any help would be great. As you can tell we r both still up at 4 am with a very sick, and in pain little girl. We are all exhausted right now. We were told by the asst the surgery would either be tomorrow or Sunday. I will update this as soon as i know. Good night -- I am going to try to sleep.