As I read my last post, I was amazed that what was just a week seemed like an eternity ago. By the time I returned to our room after writing the update, the "conventional mode" of ventilation was already failing. That night was one of our worst with the Doctor trying several vent modes as well as switching her on, and later off, of the more aggressive ventilator machine called an oscillator.
The next day we had a care conference with the doctors from oncology and the PICU to discuss the plan. After nearly two hours, we landed on a plan with the least amount of intervention so that her body would have adequate time to respond and heal. A week of sticking to the plan (a record in the medical world) and she is generally unchanged.
After 30 days in the hospital, we are considering setting up utilities and forwarding our mail. The nurses are truly wonderful and make the ups and downs more bearable. We even played a little medical April Fools joke on one of our favorite nurses, Becca, today on her day off. With her help we have also named all of the ventilators after Friends characters. Just something to pass the time and add a little fun. We had "Chandler" but when his circuit started to fail, we decided that he once again needed some time in rehab and recruited "Rachel" to replace him. Rachel's tough, I think with enough time she just may be the one.
I pray that better days are just around the corner. They're managing the daily ups and downs but generally we're all waiting for Lillian to make the final push toward health. Until then, we hold our breath and wait.
16 comments:
Dear Lori and Jeff,
We are so sorry to hear Lillian is still having such a tough time. What a marathon this is for all of you! Your strength is amazing. Hopefully, Lillian is just taking a long rest and will start improving soon. Please let us know if there is anything we can do.
Steve & Doris
Jeff. Lori, and LIllian,
Thank you for this update, I was really hoping you might send some word out. Has it been 30 days? You two are enduring so much and so well, your humor inspires me.
I think of you constanty...constantly begging God for mercy on Lillian's sweet body.
You two hang in there. I would love to come say hello when you feel the day is right, just call!
Love to you and faith!
Katie
503-706-7545
Dear Lori and Jeff,
Our hope is that Lillian has a secret plan of attack as she rests and assembles her "troops". One machine should be named "Monica". She was always feisty and so is Lillian! My choir members are always asking about how Lillian is doing and they are continuing to pray for all of you. During this holy week, may God's healing hand be on Lillian.
Paula & Tom
Lori-
I hope that last night on the new Lazy Boy was restful! You guys are so strong - and so is Lillian. I appreciate your ability to keep us updated with so much humor...love to you all!
Traci
Lori,
This is the season of hope. I have two Easter Lillies in my home. One is in the front window of the den and the other in back of the house.
Each time I pass one I say a little prayer for your own sweet little Lillian. As you can imagine that is several times a day, but multiply that by all the wonderful people out there praying for Lilly to begin making that push for health. I continue to hold all of you in my thoughts. Liz G.
Hi Lori - It is Gretchen from 10N, Lexie's mom and I thought and spoke about you and Jeff and Lillian lots this past weekend - I am so sorry I haven't seen you, but wanted you to know that I am thinking of you guys and keeping up with Lillian's progress. Nurse Gretchen
Lori,
We're praying for you and Lillian. Your strength and grace are such an inspiration to me. Please know that I am thinking of you and praying for you often.
Love,
Jenn
Lori:
All three of you amaze us. You and Jeff have taken the meaning of "unconditional love" off the charts. And, little Lillian absorbs all the love and care her parents provide her. The dash of humor is wonderful and so healthy. Once again, the three of you are amazing.
With love, Kathy H. & Forrest too
Dear Lori, Jeff, and Lillian,
I don't know if you remember me from my last post, but my name is Wynter and I'm Grady's babysitter. I'm with him everyday and I hear so much about your family. The newsoms' are thinking about you always and make us all think about how special everyone in our lives are. I love their family and the way they speak about your family makes me feel as if I have already met you. I think it is fantastic that you named your machines after Friend's characters. You are an inspiring family, and my prayers continue to be with you.
Sincerely,
Wynter Hite
Dear Lori, Jeff, and Lillian,
I don't know if you remember me from my last post, but my name is Wynter and I'm Grady's babysitter. I'm with him everyday and I hear so much about your family. The newsoms' are thinking about you always and make us all think about how special everyone in our lives are. I love their family and the way they speak about your family makes me feel as if I have already met you. I think it is fantastic that you named your machines after Friend's characters. You are an inspiring family, and my prayers continue to be with you.
Sincerely,
Wynter Hite
Our positive thoughts and prayers go out to you Lori, Jeff and Lillian. May the baby steps begin!!
Lillian is so lucky to have you both as parents.
Love Barbara
I linked to your blog thru a friends blog. As a mother, my heart breaks for both of you. I can't even imagine having to go thru what you are bearing. Just thinking about sedating my child brings tears to my eyes! I will pray for you both, and especially for Lillian. God is holding you all as you go thru this, and He has a plan! God bless you...and heal Lillian.
Lea
Dearest Lori, Jeff and Lillian,
Our prayers are constant and you are always on our minds. Thank you for continuing to update us. Please know that there is a multitude of people who hold Lillian and her brave parents in their hearts and prayers.
Love, Mindy and Bill0000000
Lori, Jeff & Lillian,
You all continue to have our support and prayers through this journey you are on. Unless you refuse, there will probably be some baked good or meal in your future :) Hang in there! Keep strong. Don't forget Shana will be back tomorrow to give Lillian a workout :)
Beth & Family
Hi guys,
The sun is shining today and I am feeling so hopeful for your family! There are flowers everywhere, we will smell them for Lillian and thank God for her fight! Praise God that she is such a strong cookie. I hope she is dreaming of all things beautiful and will wake soon with a renewed spirit and body! Easter is this weekend, the spirit of Christ is everywhere, I AM HOPEFUL!
Hoping, and praying!
Katie
Jeff, Lori, & Lillian,
Often when I read your blog entries I am left with not knowing what to say. This is definitely one of those times! You are all an inspiration to me. Please know that you are each in our prayers daily.
Love to all,
Sarah, Glen & Tucker
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