August 4, 2009

Hoping for steps forward....

Evening of August 4, 2009

Jenna had a pretty calm evening today. They rounded and discussed the situation with her at that time. They stated that because her pressures have changed, she will continue on the Nitric Oxide through the morning and through extubation and they will attempt to take the tube out sometime after rounds in the morning. They have began her on another Nitric oral pill, in addition to the current one she is taking, all the while keeping her on the machine too. They have also decided to increase her Lasix amount, and give her an additional diuretic, and she is still taking her Aldactone which she takes at home. There hope is that if they can get the fluid off of her this evening, then she will be able to breathe on her own after extubation. Tonight they are beginning her on an anesthetic sedative which is designed to completely knock her out until they are ready to extubate. At that point, they will stop it and pull the tube. It is designed to wake the child up almost immediately after stopping the dose. They are stopping the Versed and Fentnyl drips tonight also. They are afraid that if she remains on those sedatives and narcotics, then when they go to extubate she will not be awake enough and she will have trouble breathing once the tube is pulled. They said that children who are active, such as her, if remain on those sedatives and narcotics, typically will become dilerious after extubation and could possibly hurt themselves. This is not a risk they want to take. So these medicines will be stopped and the new started. They will stop it after 12 hours, because it is not safe for her to be on it long term. They are stopping her feedings @ 4am also. Her surgeon feels that if she remained on the ventilator that she will develop pneumonia, he would like it out asap. He is not sure at this point if the pressure situation if her heart reacting after surgery or if it is her anatomy structure and she is not going to be able to tolerate the hole closure. They are going to wait and see how she is after the tube is pulled. Then they will reassess her at that point to decide the next step. So, they want to give her a chance to see if she is able to do it (have the tube pulled). For the most part she has been breathing above the ventilator. Tonight her heartrate jumped to 180 and her blood pressures and mean arterial pressures jumped, along with the ventricle pressures monitored through her central line for about 30 minutes. She had become very aggitated prior to this, but they were able to call her down finally after a few doses of Fentnyl and Ativan. Shew....lots of medicines. Tonight I tried to calm her some by talking to her and she attempted to look at me and squeezed my hand. This made me feel good, that she can hear me. :) Daddy has talked to her a bit too and she moves her eyelids around like she is looking for him too. So we hope that she sleeps well at night, as well as daddy and I too since hopefully tomorrow the tube is pulled and the real fun begins. She will be awake and all over the place-maybe. We will see, we just hope for the best and that she gets better. We appreciate all of the thoughts, prayers, and support from everyone!!!! We will keep you posted on her status.

Love, Jenny, Justin and Jenna


  1. As always, love and prayer to you all. We will pray that the extubation goes well and Jenna's pressures regulate so she can remain off the vent and away from so many meds. Thanks for all the postings.

  2. Hi Guys!

    Thinking of you all often, just wanted to let you know. I am wearing my bracelet daily as a constant prayer!

    Let me know if you need anything.

    Love Ya,