Good morning, Ruby has had a good weekend. Overnight they were able to drop the ventilator PEEP down to 8 and the oxygen to 60% (the lowest they want to go for now). Her oxygen saturations remained in the mid 90s, we saw them dip to 92 a few times. When we went to bed we weren't certain that she would be able to sustain it (it was 65% and 9 at that time) but obviously she did! Thank God! This morning the RT changed the ventilator to CPAP mode with pressure support. So now the ventilator isn't controlling when she takes breaths, she does. It will intervene if needed as a safety, but this is a big step back to where she was before she had pneumonia a little over a week ago. She is still peeing more too!
She still has a long way to go, but these changes have been positive and the mood around here is getting to be a bit more cautiously optimistic. There was a cardiology meeting today and they thought that if she continues to improve, then on Wednesday a tracheostomy should be done so that the breathing tube and ventilator can be connected through her throat. It doesn't sound like a good thing, but it will be much more comfortable for her and allow more movement and more options for holding her (she could lay on us, facing us). So that's our current goal for little Ruby.
Here is a prayer that Charlotte wrote:
Lord, watch over Ruby, guard her life and be her strength as she heals and recovers. Lord, be our strength as we wait and watch. Guide the doctors and nurses and therapists as they make decisions. Lord, cover Ruby in a blanket of healing, instruct your angels concerning her to protect her and watch over her. Lord, we come against the powers trying to blot out Ruby's life and light, and we command them to stop in your name.
We hold onto Your hope and stand firm in our faith. We believe that You are in control and that You will make a way through for Ruby. We pray Life, not death. We pray strength, and healing, and recovery over Ruby now. We ask for more time- for years and years of time for Ruby, not just days or weeks. We put her in Your hands and ask for You to continue to make a way through.
We are so thankful for every work you have already accomplished in Ruby's life, you have been so good, Lord. We thank you that you don't leave us alone in this broken world, but that you journey with us through these valleys and that we have an eternal hope through You. We thank you for Your comfort, Your love and Your peace that surpasses all understanding. With thankful hearts, we ask for more- We aren't content with the current prognosis- we ask for better days, better outcomes.
Lord, surround her and empower her little body to get through this! We know that when we are weak, then you are strong. So we continue to ask for strength and healing, that can only come from you. We pray for miracles and thank you for the miracles you've already accomplished in Ruby's life.
Lord, be her strength, her peace, and her healer. May you be glorified and magnified through her life. We know you have placed a call on her life and we thank you for who you created her to be. We thank you for all the plans you have for her, all the joy, and love, and light that she will shine in her big, wonderful life. We ask that that light would not be blotted out, but that those plans, Your plans for her, would come to fruition. Lord, we continue to ask for life for Ruby.
We continue to pray healing over her life. We press into You, and trust that you will give us the desires of our hearts. That you would work all things together for her good, and that you would continue to heal her.
In Jesus Name we pray, Amen
Left is yesterday, right is today. She is looking a lot less puffy in the face.
