And it Continues

The roller coaster, that is.  But it was in a positive way this afternoon.  After the doctor put Lucy back on Morphine and Zofran she has been a different person.  Her pain has not gotten out of control and she has been able to keep down a little bit of food.  We had lots of doctors in and out today, all concerned about her sustained, elevated heart rate.  Normal heart rate for Lucy should be in the 60's and 70's.  Lucy stayed well above 140 all day.  She even went into V Tach a few times.  Luckily, she worked herself out each time and would go back to resting.  She is easily irritated and even just hearing Erik and I talk makes her heart race.  The pediatrician who was called in to monitor her said she was just so dehydrated and so weak from losing so much weight that her body was almost in a "shock" state.  Orders were written up for her to be put on TPN (Total Parenteral Nutrition) until she gains weight.  Basically she is being fed a super high calorie diet of amino acids, vitamins, fat and dextrose broken down into a liquid form through the Double Lumen Central Line that was surgically implanted into her chest.  I understand that the stuff costs something like $1,000 a bag.  She will have a bag a day until she is well.  Thank you Lord for insurance.  Yet another blessing that God has revealed today. 

We have instituted a "quite zone" policy in Lucy's room until she feels better.  No loud talking, only 2-3 people at a time and no lights.  She is easily overstimulated right now due to steroids and other medicines and a low pain tolerance.  We saw a marked improvement in her overall health today by giving her a chance to rest.  She has been so peaceful.  Erik and I have still enjoyed our visitors, we just go down to the family room instead of talking in the room with Lucy.  We had several special visitors today and we were both extremely grateful for the Jambalaya that Mrs. Shelia brought to us.  I seriously had 2 plate fulls.  I think I've only eaten about 1 meal a day since last Wednesday.  And that meal I have to force myself to eat. 

At 1:00 today we went to tour St. Jude.  I began to feel an anxiety attack coming on as we rounded the bend to enter the gate.  As we walked up to the front entrance I had to muster every ounce of courage I could just to walk through the door.  I can't even begin to explain the feeling.  As I stood in the foyer I just cried.  The reality of my baby's illness hit me, once again, like a 2-ton truck.  Wow!  I could hardly breathe.  When I saw the radiation room I cried.  When I saw the chemo room I cried.  As I met new doctors I cried.  But then as we began to see the non-clinical side of the hospital my burden began to lift away.  I saw smiling faces, happy children and content mothers.  As my fears subsided, my eyes began to open.  I began to see that these people were here and happy because St. Jude is making their babies well.  Don't get me wrong, every mother and father and grandmother and grandfather would give anything not to be there.  They were all probably still mourning their child's diagnosis, but each of them knew that they were standing in a building where miracles are performed everyday!

If there was any doubt in our minds about where we should go for treatment, today solidified our decision.  When we left we both looked at each other and almost simultaneously said that this is where our Lucy will be healed.  For those of you who prayed that God would give us a clear sign, he answered in a BIG way today. 

Matthew 7:8
For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

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  1. Oh, Kate, I'm so glad you felt a peace inside the doors of St. Jude! I had prayed that you would--I have literally witnessed miracles there and I believe God is all over that place. Continued and focused prayers for Lucy!

  2. hey. you have no idea who i am. I came across your page from a friend of a friend. I am so sad to hear about your little girl. But i wanted to tell you that I used to be a nurse at st jude. I know lots of the nurses who will be taking care of you and your family and they are wonderful and will do everything they can for you. They are excellent at answering questions for you about what is going on so dont be afraid to ask. They are very understanding and compassionate. I dont know if knowing this helps or not but I wanted to let you know that the people who are going to be taking care of you through this do care, and understand that your world has been completely ripped apart. I wish nothing but the best for you and miss lucy. She seems like she is a fighter.

  3. Just found your blog through Another Ordinary Miracle. I used to work at St. Jude and I know that you could not be at a better place. I am praying for Lucy and the whole family.

  4. I am just another person praying for you but I wanted to let you know that my little boy is a patient at St. Jude and has been for the last two years. My son has an illness that cannot be cured. He is very happy at St. Jude, as am I. I know that you and your family will be too. Everyone, from the security guard at the front gate to the doctors and nurses, makes all of us feel very welcome and very safe. St. Jude gave us the one thing no one else could. . . HOPE. I felt the exact same anxiety that you did the first time I went to St. Jude but now I thank the Lord everyday for sending us there and for helping to make my little boy better. That is something that Dallas Children's, Denver Children's, and LeBonheur couldn't do.:)
    I will be praying for your little girl and for you and the rest of your family too.