Corded, Wired and Tubed

Well our little Miss has been BUSY! We survived the weekend with oxygen, toe glow, and g-tube cords and kept most of them in their relative places.

We earned our "take your medically fragile kid to church" badge. Go US!!

My sweet friend Rachel (I LOVE YOU RACH!!) took the twins into a private room to play with them so we could hear the sermon. A MUCH needed break. She didn't mind all the cords and wires, and even took Celia out of her stroller and was reading to her. A gem of a friend!

On Sunday during church with Rachel, AND on the way home, she de-satted into the low 80's several times while on oxygen. Hmmmm.....

So Monday we pow-wowed with her pulmonary Doc and she is now thinking:

A) It's a cardiac issue.

Side note:We went to the Cardiologist today and her heart is structurally sound. She has now added a heart monitor with all its wires to ALL THE OTHER WIRES AND TUBES for the next 24 hours to see what her sinus rhythm is when she has her heart racing episodes. Hopefully, she actually has her heart racing episodes, so we can get some good data.

B) It's a neurological issue. It could be that her brain is not sending signals to her heart and lungs like it should. Or the seizure meds could be causing it.(The Cardio Dr did not think so.)

C) It's a pulmonary issue. Her lungs are not getting enough oxygen so her heart works overtime to deliver red blood cells to her body. It would definitely explain both the de-sats and the heart racing episodes. The plan is to have blood drawn tomorrow to see how she is metabolizing the little amount of extra oxygen she is getting. If she is not becoming toxic, we may increase the volume to see if the episodes resolve.

She also said (which her teacher also mentioned on Monday) that we need to start the process for a night nurse. It's a fight to get insurance approval, but she thinks we are heading in that direction and wants to begin that process now. I have VERY mixed emotions about that.

So we are still in the discovery phase and it looks right now that oxygen is here to stay. Her Dr.'s exact words were,

"I think we are seeing a progression of the disease."

Sigh.
Praying she is wrong on this one.




Annnnndddd, I have some really cute pictures but Picassa says I have to now PAY a MONTHLY FEE to use them on my blog. Argh.

I may need to switch hosting sites. Any one have suggestions?!?




Comments

  1. SueDecember 4, 2012 at 10:56 PM

    Cristy and Family,
    I am so glad she is with you. The love you are giving her no matter if she has a short time or a long time with you, she has you and your family love and you can see it. I do pray that whatever it is, it not progression of the disease. Hugs to you....

    ReplyDelete
  2. KarenDecember 4, 2012 at 11:46 PM

    It is so sad to hear that little Celia is experiencing these unexplainable issues. I hope the doctors are able to pinpoint the cause soon. I too got the message that I've used up my free space for pictures and
    Now need to pay.. But google says I've only used 53% of my free space. There is a current notice that blogspot is receiving error messages of inadequate free space for photos. Hopefully they will correct it very soon!

    ReplyDelete
  3. KarenDecember 4, 2012 at 11:47 PM

    It is so sad to hear that little Celia is experiencing these unexplainable issues. I hope the doctors are able to pinpoint the cause soon. I too got the message that I've used up my free space for pictures and
    Now need to pay.. But google says I've only used 53% of my free space. There is a current notice that blogspot is receiving error messages of inadequate free space for photos. Hopefully they will correct it very soon!

    ReplyDelete
  4. NavhelowifeDecember 5, 2012 at 8:13 AM

    OH honey. Praying.

    ReplyDelete
  5. Lee AnnDecember 5, 2012 at 8:17 AM

    When I think of all you are going through I just have to praise The Lord that sweet Celia is with you to be cared for and loved on and not in an orphanage. The Lord knew she would need you before the beginning of time. I pray for Celia and that sweet smiling face even with all the tubes. And friend I pray for you. I cannot fathom how fatigued you are. You always sound so upbeat on your blog and always look so put together and beautiful in your pics, however, I know you can't be getting much sleep. I pray the hour (or hours if you're lucky ;) ) are truly restful ones. Prayers sweet friend!

    ReplyDelete
  6. Grandma and GrandpaDecember 6, 2012 at 11:22 PM

    We do wish we could understand all of this, but we don't, but we know that God does. He has a plan and a purpose for her life and He will see Celia through all of this! He "will never leave her nor forsake her." We are praying! Kiss her for us.

    ReplyDelete
  7. Granpa and GranmaDecember 7, 2012 at 12:03 PM

    It is very true, Celia is in the very BEST place she could ever be. The best Mom and Dad for her situation and the most loving brothers and sisters ever. God is in control of all these issues and He has her in the palm of His hand. We will be praying as always along with ALL our prayer partners all over the world That is what the body of Christ is all about. PTL

    ReplyDelete

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