Tuesday, October 5, 2010

Tuesday, October 5, 2010 11:18 PM, CDT

Elizabeth is officially on her home ventilator! She has done well with it since they transitioned her over, so we will see how tonight goes. We will have training tomorrow on the ventilator from our home health person. And then we will do our 72 hour rooming in, where Matt and I are doing all of the care ourselves and resolving any trach/vent issues on our own. (Nurses will still be avaialble to help if we need).  If Elizabeth continues to do well we are looking at going home Monday or Tuesday. We are exicted and scared to go home, its ALOT of responsiblity have a child with a trach, a ventilator, and a feeding tube. 
So now we are trying to figure out what all we need to get in order before we get out of here. We went and looked at some double strollers today, so we have room for Elizabeth and all her equipment when we go to doctor appointments. And we are thinking we should go ahead and get her a convertible carseat so she has more room with all of her new accessories. We are also begining to realize the large amounts of medical supplies we will have in our home. We already had alot before with the oxygen tanks/supplies and her feeding pump/supplies but now add to the oxygen/feeding stuff, trach stuff and vent stuff I think we need a bigger house ;)
We are still dealing with insurance on getting home nursing taken care of, the company we planned to use is out of network. But we are hoping something can be arranged to use them, if not we still have other options but we need to get it arranged by Friday!!
We want to thank everyone  for your support, we are beyond grateful for the call, emails, posts to this page, and generosity. Elizabeth has definately changed our lives and we hope that by sharing her journey, she has been able to touch everyone elses as well.

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