Nov 26, 2007
Room 208 has become our home in the past two and a half weeks. My precious sweet daughter was admitted with double bacterial pneumonia. She was recovering well when suddenly other problems began to arise.
For 5 months I've watched her changing. She's been losing weight and getting weaker. In the back of my mind I knew something was not right but she's always had issues and thought this was just another struggle with her weight. On our way to the hospital two weeks ago I knew this time was different. She was so weak, her body just seemed tired. She wasn't herself. My gut told me this would be our last time being admitted to the hospital with her, I was right.
Her little body has fought so hard for over 2 years. It's no wonder she's exhausted. She's become my hero and my inspiration. Her time is coming to an end and my heart is breaking. They tried to continue fluids (pedialyte) when we realized that she was not tolerating her formula and was having some horrible stuff backing up into her feeding tube. Her stomach began leaking at her tube site, she was dropping her heart rate really really low, and getting weaker. The doctor said that maintaining a very low heartrate would affect her organs and their ability to function. He told me that they usually see this in the begining stages of "the end".
The pedialyte didn't work. Because she was no longer able to digest anything her lungs were absorbing everybit of fluid that we were putting into her body. The morphine they were giving her through her tube in her stomach wasn't being absorbed or digested and did nothing. It was as if they were giving her water to kill the pain. With her lungs filling up with the excess fluids we were in essence, drowning our daughter. I knew that no amount of morphine in the world would compensate for the terrible feeling of drowning. We had to make a decision. She's going to die do we....continue the fluids? drowning her and causing a terribly painful and traumatic death? OR do we stop all fluids etc and manage her pain with a morphine drip to keep her comfortable and able to die a painless peaceful death? We chose the latter.
We've done everything to keep her comfortable. The morphine has had to be increased a couple of times and she does occasionally require an extra "boost" (bolus) for the more severe pain. She's held on for over 10 days with nothing but morphine. She came into this world fighting and is proving that she will leave this world fighting.
I've moved her from the hospital crib to the hospital bed where I sleep. She sleeps on a pillow next to me in the bed and stays in my bed at all times. When family and friends visit they take turn laying next to her since she is too weak and frail to be held and passed around. Her breathing is relaxed but extremely shallow. There are times I have to really get down close to her to see if she's still breathing. Her daddy sleeps in a second hospital bed that they've put in the room.....her room, where she's been each and everytime she's been admitted here...more times than I can remember.
We have a lot of memories in this room,Thanksgiving, Christmas, Easter, birthdays (hers and other family members') and many more. The nurses on this floor know this room as "Faith's room". Even her nurses have been so broken hearted. Over the last two years they have become part of our family and are sharing in our pain.
We've all told her that she doesn't have to fight anymore and that there's nothing here to hold onto because heaven is waiting for her. She a fighter and a redhead on top of it! I've told our family and friends that I can just imagine Jesus standing at the pearly gates with his hands on his hips, tapping his foot saying "Faith Lynn!! How many times do I have to tell you to come to me?!". Boy is he going to have his hands full when she finally listens and runs through those gates and into his arms. For the first time she'll be able to see, run, walk, talk, laugh, sing, giggle, skip and play. She won't hurt anymore and her body will be perfect. She's fought so hard and touched hundreds if not thousands of lives most of which we'll never know.
I'm so proud of my little "baby Faith". She proved every doctor wrong when she was born and survived, and again when we brought her home. She continued to prove them wrong over the next 2 and a half years and is still proving them wrong on her way out. Who could ask for more in a daughter? She held on and was there when her little sister was born. In my heart I believe that she waited for Abby so she'd know that her mommy and daddy wouldn't be alone and that Abby was ok. Not only has she been an incredible daughter but she's proven to be a terrific big sister.
My heart breaks with every breath that she takes now knowing it could be her last. No parent should ever have to watch their child die. It's agonizing. The pain I feel can't be expressed in words. My heart, body and mind ache so much. My mind can't fathom a life without her....I've devoted every second to caring for her as a mom and as her "nurse", "therapist", and so many more things. Thank God I have Abby or I think my heart might die with Faith when she does. God knows all and now I understand why He gave us Abby. His GRACE is truly sufficient....that's why we names our youngest Abigail Grace.
I've got to close for now. It's night time and all the visitors are gone....it's my special time to curl up with her and talk/sing to her. Daddy's asleep a few feet away, now it's time for mommy and Faith to cuddle...every second could be our last.
drained
- Reply
3 years agoI have always considered your friendship a great blessing in my life, and also a precious gift from God.
I love you.