Care Conference

Brielle has had a big week preparing for yet another big day. Last Friday there was a care conference regarding Brielle's care both while she is in the hospital and long term cares at home. The first step to getting Brielle closer to home (and when I say closer I mean not for months) is a procedure in which she will have a tracheotomy. A trach is done on babies that are going to need long term respiratory support. The trach will allow for Miss B to have all that "stuff" out her mouth, off of her face and it will plain just be more comfortable for her. The hope is that the trach will also allow for her to be weaned off all the sedation medications that she is on. The vent that she currently has is not comfortable and when she wakes to much she gets agitated and it causes her oxygen needs to rise which in turn causes her O2 saturation levels to drop. Of course the other benefit of coming off the sedation is giving her the opportunity to experience more developmentally appropriate activities... like smiling and sitting in a bouncy chair or our favorite- not having to have a small army to lift her into your arms. Brielle also had a CT scan last week, the scan showed that her lung capacity is about 1/6 of what a infant her size should be. The trach can't fix that but it can allow her lungs to get the long term support she needs so that with time they can heal and grow stronger. That is the hope and our greatest prayer that her lungs can heal enough that the trach will be a thing of the past. There are other things to address but in time. In the meanwhile please keep her in your prayers this week as she is scheduled for surgery Friday. While she is in the OR she will also have a G-tube placed, this is done at the same time as it is necessary with the trach. We have amazing doctors and nurses, we have a little girl with a fight that has always inspired us and we have a God that is holding her (and us) close through all of this. <3 Brielle sweet girl- we love you. 

(taken from fb)
<3

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