Sunday, April 5, 2009

SUNDAY

Today has been a hard day emotionally. Honestly, I had a hard time getting out of bed and joining the fight today. I wanted to pull the covers over my head and pretend this wasn't happening. I am a pretty private person and I am tired of people watching my emotional roller coaster. I feel like crap, look like crap and am ready for this crap to be over. But....as the day has gone on, I have gotten better and realize I can't lose hope. If I lost hope then I am not helping Faith at all. We all need to try to be strong. Faith continues to be strong, so we need to be as well.

As far as Faith goes, we got our bubble burst a bit today. We were on such a high last night from the CT scan and this morning we were told it was grim again due to high acid levels. Also, her feet are so very purple and are cracking, blistering and draining fluid from them. However, if we lose the feet but keep Faith, I will be forever grateful. We can deal with that outcome.

It is 5:30pm right now and Faith has held at a stable level all day. That is all we can ask for at this moment. They were able to wean off one of her medications, wean off some of the oxygen and her blood gases have been looking good. That is the positives of the day and we will take all we can get.

It was wonderful to see the other kids and the Ronald McDonald house put on a nice Easter Egg hunt. I think seeing them is ultimately what helped my mood. They are such awesome kids!!!

I hope tomorrow's post will be a more positive one. Please keep up the prayers and positive thoughts. We still need them!

**By the way, this was not meant to get sympathy. It was simply sharing the true feelings of this ordeal. I am making this blog to share with everyone what is going on, but also as a chronical of the events both medically and emotionally for us to keep and look back on. We know we are going to have our good days and bad....that is the roller coaster ride that all of us with special needs kids unfortunately have to endure.

7 comments:

  1. You don't know us personally but want you to know your family and your beautiful little "Faith" are in our prayers.
    Dennis and Thelma

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  2. Shelly and Monty:
    Our thoughts and prayers are with you always!
    Faith will come out of this stronger and more beautiful than ever. Take care and we love you! Marlene, Jason & Jennifer

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  3. Dear Shelly, you and your beautiful girl will be in my prayers until the day you bring her home. Heart hugs, Karen

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  4. Oh Shelly, I am so sorry. I was so there, not getting out of bed, pulling the covers over my head, not wanting to deal.I and many others continue to think about you and pray for you.

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  5. I know I don't know you and your Amazing Family...But I am Caleb's Mom, and he has Hypoplastic Left Heart Syndrome...I can relate to those feelings you share, and I will pray for you and your family...and for tomorrow to be a blissful and positive one! God Bless you and your Family. Stay strong, if you ever need to talk no matter the time or content...we are just phone calls away! Tina Sanchez 916-662-5359 Heart Hugs and Kisses ~

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  6. I'm so sorry Shelly. I think it's normal to feel that way sometimes. Just keep hanging on. I'm going to come by later today, in the afternoon.
    Thinking of you always,
    Andrea

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  7. Shelly,
    Keep on sharing and letting it out. You need an outlet. And there are so many people who love you and your family and who are praying. Call us if you need help at the house.
    Chris

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