Monday, August 22, 2011

Never Ending Setbacks!!!

I know I have been slacking on blogging lately, but to be honest I am pretty much too frustrated with everything at this point to write most days..I barely have the energy to call or text my friends and family to let them know what’s going on!

It seems like the minute I get excited about how things are going, the very next day everything starts going wrong and we are back to square one!  Not only is it agonizing watching my 5 week old daughter go through this, but being away from my family for such long periods of time is really starting to take it’s toll on me.

Peyton’s still not gaining weight like she needs to so they have decided to reinsert a picc line for her so she can get additional nutrients intravenously along with her bottle feedings. Her bottle feedings consist of breast milk mixed with fat lipids.  They add the fat lipids to give her even more calories in hopes she will fatten up!!

THE PICC LINE NIGHTMARE!!
They sedated her with morphine on Friday and tried to insert the picc line by her bedside, but after almost 2 hours of poking and prodding at her they unfortunately weren’t successful.
Today they took her to interventional radiology to have it inserted.  This requires even heavier sedation and they do a continuous xray so they can see where the picc line is going as they are feeding it through her arm. 

They successfully got it in HOWEVER it fell out tonight after only a couple hours of having it put it!!!  It was quite traumatizing for me with the amount of blood that was coming out of her little arm.  SO now tomorrow she has to go back there again for more sedation and more xrays to have it reinserted.  I honestly can’t even cry anymore…I just feel numb at this point! 

Thankfully Radek seems to be holding up really well thanks to the help from my  AMAZING friends and family.  I honestly can’t even imagine how much worse this situation would be without their help!

I have lost count of all the xrays, heel pricks, and needle sticks she’s had, but I’m pretty sure for each one the number is close to if not over 100!!

4 comments:

  1. Praying for Peyton, you and the family.

    ReplyDelete
  2. I know you probably read a ton of comments saying " I am sorry that you have to go through this..." I don't think any of us can imagine exactly what it must be like. I wish that we could make it all better for you and little Peyton. One day, sooner than later it will be better. Hang in there mama. We are rooting for all of you. hugs

    ReplyDelete
  3. Im sorry for the pain you all are enduring. Praying always.

    ReplyDelete
  4. Oh Jamie I wish I could give you a huge hug!
    I can only compare our first year with Soph to yours with Peyton. I know it feels never ending, I know it feels like two steps forward and about a hundred back but I promise you things will start to get easier once she turns that corner.

    Soph was in for nearly her whole first year and it was the worst thing I have ever experienced but now she's four and it all feels like a distant memory. Almost like it was someone elses world not ours.

    I hope soon you will be able to feel like that and get to enjoy having your family of four all together. I know this will happen.

    Lots of positive thoughts and prayers for you all and if you ever need to talk to someone that has experienced this, please get in touch if I can help at all.

    http://lungsbehavingbadly.blogspot.com/

    You are doing amazingly well, trust me.

    Much love to you all.
    xxxx

    ReplyDelete

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