Tuesday, August 30, 2011

and yet ANOTHER setback!

I once again have very little positive things to blog about! I was planning on this weeks entry being about FINALLY having a date for her upcoming reconnection surgery-which is officially scheduled for Monday, September 21.  This to me is gut wrenching because it seems soooo far away….yet so close!  It’s such an exciting thing...to think about her being fixed and normal and finally having things moving in the right direction to get us home.  It’s also extremely nerve wracking knowing she is going to be having another MAJOR surgery just weeks away!

However, unfortunately this weeks big news is yet another setback due to a blood clot that recently formed around her picc line. 

A couple days ago I noticed that her hand was swollen.  After having it looked at by several people they decided to let it go for a day or two and see what happens.  Last night I noticed not only was her hand still swollen but her whole arm was.  They then ordered an ultrasound and that’s how they found the blood clot.
Here's a picture of her swollen hand.
At this point the picc line needs to come out because of the clot.  Since it was her third one the doctors decided they need to try something else to get her nutrition because the piccs, which are suppose to last long term are obviously not working.   In place of the picc line they decided to place a broviac.  This does the same thing as a picc only it’s located in the chest instead of the arm and to insert it is going to require 3 MAJOR things that I’m NOT looking forward to….a trip to the operating room, anesthesia, and a breathing tube “because of the anesthesia”.
They are going to need to make an incision in her chest, place the tube, and stitch it into place.  This will give them central access to give her the hydration and nutrition she needs.  It’s essentially doing the same thing as her picc only it’s  more secure and the veins are a little bigger in her chest than her arms so hopefully this will last and won’t be an issue!

SoOOOOOOoooo now  not only do I have to worry about my baby girl going under anesthesia once again, I have to worry about this lingering blood clot in her arm which she is now going to require a blood thinning medicine that needs to be dispensed twice a day for several months via a shot.  There was a day not long ago that I use to cringe at the thought of having to take Radek to the pediatrician for his immunizations, now I have to learn how to give my baby girl shots twice a day for this blood clot so it doesn’t travel through her body and kill her.

I honestly can’t believe this is all happening to my poor little innocent baby.  She is 6 weeks old and the list of things done to her is growing so quickly.  On top ALL the things she’s gone through thus far….she now has 3 picc lines and a broviac to add to it.  I don’t even look at her as a little baby anymore.  Looking into her eyes it’s almost as if she knows what’s going on.  Even the doctors today who were talking to me about everything pointed out how she was looking around at them while I was holding her as if she was understanding what they were saying.  I have so much respect for her.  She truly is the toughest person I have ever met!!!

4 comments:

  1. She might be the SECOND strongest next to Radek bc the first strongest is def their Mama!! Prayers to you, Jamie!! Keep your head up and may God bless little Peyton!!

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  2. The poor lil hand! Way to be on top of things Jamie! Praying for your continued strength, you are a great example to both R and P. Sending love to all of you! Xo

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  3. Goodness...her poor little hand. Thinking and praying for you all. Hugs.

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  4. My heart aches for you! I just came across your blog and what you are going through is pretty much exactly what I went through with my son Ben almost 3 1/2 years ago now! He lost 75% of his small intestine but he never had a colostomy bag they just put him back together. He had many sets backs just as you are describing. He had about 5 Picc lines and then we finally went to a broviac. We spent almost the first 5 full months of his life in the hospital. I was like a walking zombie towards the end just doing. Amazingly we are finally at a normal place in our CF world. At times it was hard for me to believe we would ever be at home in our own normal. I can't imagine the heartache you have not being able to see Radek for days at a time. Ben is our only child so that made things a bit easier. If you need to vent, chat, yell please feel free to email me at katipannecouck@gmail.com I wish nothing but the best for you and your precious baby girl! I hope you are home very soon and you can look back on this as a distant memory! Hugs, Kati Pannecouck www.benjaminanthony.blogspot.com

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