Today we started weaning Mallory's ventilator. They got her rate to the lowest setting and tonight they plan on starting breathing trials where they will shut off most of the ventilator settings and see how she reacts. I believe they will leave them off for different periods of time and will try this multiple times. If she does well, they are planning on removing her ventilator Wednesday!
They also tried to feed her formula again. She did not react well to it. Her oxygen level in her stomach went really low, her face turned red, heart rate went through the roof. They turned off the feeding and we hope to try again tomorrow. It was a scary moment for me that I hope we don't have to go through again.
We are peeing very well! I actually noticed a difference when I saw her today. It will probably still be another couple days before she is back to normal, but she is doing really well. They are hoping to take her off the diuretic drip and go to 2 doses a day which will help remove the urine foley and we can go to just changing diapers!
We have almost been here for 3 weeks, and 3 weeks of pain medication has taken its toll on Mallory. She is starting to show signs of withdrawl as we try to wean her medication. They are starting to treat her for that with the goal of removing the drips and giving her methadone and valium in doses throughout the day which will help treat the withdrawl. It is a crazy process that we can hopefully get her through very quickly.
We also did another echo this morning. She again showed slight improvement and for now we are still passing on transplant if one came available!! Dr. Kanter said today that he believes the echo picture is not showing the same picture that Mallory shows. Mallory appears to be doing better than the echo so at this point we need to follow the baby and not the picture.
Our goals for the week... Remove the breathing tube, start and maintain feedings, successfully treat the withdrawl and start taking this mediation orally so we can remove some of the IVs, remove her urine foley!
And
HOLD MY BABY GIRL AGAIN!
Jesse, that's great news overall! I am sorry the formula feeding did not go well. I have been following this blog so closely as you update us all - thank you for taking the time in the middle of this crazy period of your lives to keep us all updated. We are still praying for you and your family (and we have our whole church praying too!). - Kurt & Alli Kraft
ReplyDeleteWhat a day you had today Jess......my heart is with you tonight and again I pray for peace for you and Dustin and that Mallory stays enfolded in Gods grace, love and healing. Love you so much
ReplyDeleteKeep the good news coming!! I look forward to reading your daily posts and learing how Mallory is healing and getting stronger everyday. I know you will be able to hold your sweet daughter very soon. Every night Leila and I make a wish on the first star we see. My wish is always for healing for sweet Mallory. Your family is always in my thoughts.
ReplyDeletePraying for you to hold your baby girl VERY soon!!!!!
ReplyDeleteSweet Mallory is going to meet all those goals this week, b/c she wants to be in her Mama's arms as much as you want her there. She has already done so well with everything else. She is a strong, strong girl. She is such a blessing. Thoughts and prayers with you guys!
ReplyDeleteBecca
Jess, I am so happy that the good news keeps coming. I know that you know that you have lots of people praying for you in Memphis, but you also have people praying for you in Doolittle, MO (a whole church of them - My Grannie and Pa added you to the Prayer list). My family is staying up to date on Mallory's journey as well and they pray for her everyday.
ReplyDeleteWe love you and hope to see the four of you soon!!
-Kim