Liliana Sue

Liliana has been doing extremely well ever since they switched her back to the conventional ventilator. She has been a lot more calm and relaxed. They have even been doing further weaning attempts to get her using her respiratory muscles a little more. Currently they have been putting her on CPAP trials. Most of the time her vent is set in assist control mode. In that mode the machine automatically breathes for her so many times per minute (as many times as they have her set at). In that same mode if she decides she wants more breaths than what she is set at, she can initiate extra breaths. However, if she does initiate the extra breaths, the machine helps her with those breaths exactly the same as the breaths she automatically gets. Now they are trying her on CPAP trials. Initially they told me that they were going to try her for 15 minutes at a time. In CPAP mode she is still on the vent, although she breathes "on her own". All the machine does is give her a constant pressure. She inhales and exhales on her own. If her respiratory muscles continue to get stronger, they will be able go down on that continuous pressure until she is breathing completely on her own. Anyway, today she tolerated being on CPAP for an hour without any difficulty. What a strong and amazing little girl. She continues to amaze us every day. I wish I had some pictures to go with these latest developments, but I have not been able to upload any yet. I promise I will have some for all of you to see by Tuesday, so be sure you check back.