Tuesday, January 24, 2012

January 24, 2012 --- Keeping it Real....

  • Today has not been the very best day! I know that there will be ups and downs but today has certainly been the lowest day we have had since we have been here.
  • I have been trying to be very positive and optimistic about what I say on this whole situation and Brylee's condition on the blog. I guess I am just trying to make the best of it and looking at it in my glass half full eyes.
  • This whole situation SUCKS! My baby girl one of the most important people in my life... is sick... very sick! She has been put through more pain and treatment this week than I have had in my 33 years of life. She has not had a bite of food in her mouth in almost a week. She has not had anything to drink since 10:00 am today! NOTHING!!!!! Not even an ice chip! She has about 5 different tubes hooked up to her poor little hand. She has an IV in one hand, a PICC line in her arm which is a tube that runs inside her arm toward her heart, and she has a tube up her nose that goes into her stomach that is sucking out all this nasty infection that is inside her stomach and dumping it into a canister. It looks like nasty muddy water! She will not be able to have anything to drink until the tube in her nose to her stomach is removed. She want even talk because her throat hurts from throwing up all this nasty stuff about 4 times a day and because her tube runs up her nose, down her throat and into her stomach and she has a big piece of tape stuck to her face to hold it in place. Her tummy hurts but yet she continues to push through the pain and get out of bed and walk to the bathroom. It is rough!
  • I don't know when we are going to get to go home! Best case scenario is next Monday! I would love to say I believed that was going to be the magic day but that might be wishful thinking! I want my baby to feel better and be well before we even head out of these doors. She is absolutely the most pitiful thing I have ever seen... it is not fair no one should have to go through this especially a child! She just lays in bed dosing in and out of sleep and moans every few hours. This whole thing STINKS!!!!!
  • Everyone ask me how I am doing and I try and stay positive... if for no one else but for Brylee... I am doing as good as anyone else would be if their child was laying in a hospital bed in the condition my child is! She doesn't want me to leave her side and honestly that is fine I don't want to leave it... she is my main focus at this time! Richard is doing about as well as any daddy would be doing if their one and only baby girl was laying in a hospital bed hurting and being poked and prodded like Brylee is and yet he is to be the strong parent and can't stay with her all the time! He comes for short visits and then goes home with Jackson he is trying to keep his little world as normal as possible. He left with tears in his eyes tonight. I know it is hard for him to see her like this and he want see her until Thursday after school... b.c he has to be the strong daddy for both babies and a mommy! Life is just hard!
  • Here are some real pictures... I try and post the best ones but really that is not our days... this is what I see most of the day!!!
    a clown picture... and no she is not smiling or talking to them... but i know she enjoyed them!

    this is what she looks like....and here is the machine that has about 5 wires hooked to her... this is her food... doesn't it look yummy! There you have it.... life as we know it in room 688 at children's hospital! Please continue to pray for my precious baby girl!!! Here is how you can pray.... - pray that the antibiotics are working and healing her little body - pray that her CRP level goes down - pray that the tube in her nose sucks out all the "junk" in her stomach - pray that she gets that tube out tomorrow so she can have something to drink - pray that her appendix doesn't abscess - pray that she will be pain free soon - pray for our family as we are all apart yet trying to stay strong for each other I really do feel good about her progress. We are seeing improvements daily! She is healing but this is not going to be a short road... we have a long way to go! I am so thankful she is resting peacefully and so thankful for good moments each day even if it is only 15 or 20 minutes a day!

**I know our God is Big! He can and will do a mighty work in my baby girls life! He is the GREAT Physician!!!! Thank you Lord for all you have done and will do to heal my precious baby! Will you pray for my baby girl???


  1. Love your honesty. Vent to us all. I have been exactly in your shoes one too many times. Thankfully, only one time in past three years. I am praying and love that I have specific things to pray about. Let me tell you one semi good thing.....Brylee is young. She will remember some of this for awhile, but she will forget most of it. Unfortunately, you won't. :( We love you all....and I am truly happy they are really doing s good job of keeping her somewhat pain free. I learned the very hard way about pain control and kids with Gray when he was in hospital at age 4. Luckily, he doesn't remember much. So. Glad God is our Father and takes care of us even when we are too tired or stressed to pray.

  2. oh, i just want to cry. We will certainly keep praying for her. Bless her little heart.