Wednesday, July 6, 2011

Surgery again.

This morning when I came in, Grace had had the cranial ultrasound and her nurse was waiting for the final results. She paged the PA for Grace's surgeons and she came down and talked to me. She said they got the report back and Grace did have fluid accumulation around her brain. Hydrocephalous. Neurosurgery came down and checked her out and talked with me. They said based on how her head was bigger than it should have been, and her ultrasound and the fact that her eyes were downshifting and she was very irritated but in a different way than normal, were all indicative of Hydrocephalous. So the solution is to place a shunt in her skull. She will have this rubbery plastic piece that sits on her brain with tubing through and down to her stomach to drain the Cerebral Spinal Fluid from her brain to her stomach, where her body will hopefully reabsorb it. The shunt will be permanent, and she could possibly need numerous additional surgeries. They know some people do not need more than this one, some need just another and some need up to 10 more just depending on different factors. With Grace having had her CDH repair, then having it opened again to place the GJ her stomach is compromised so they may not be able to place it there, if they cannot place it there then they will need to use her venous system. Which in Grace is tricky since she was on ECMO she does not have use of her right jugular and Carotid artery, so they would try to go on the left but she has a Broviac in her right subclavion so then there are challenges finding where to thread it through. So hopefully they can go to her stomach.
Grace will intubated for her surgery and will come back from surgery intubated and it will be very hard for me to see her like that again. Hopefully she will be able to extubate soon and not have any issues coming off the vent, she was doing so well before. She is down in surgery right now, and it's unkown how long the surgery will take.
Please keep thinking of her and keep her in your prayers. I really hope this is the last hurdle she has to jump.


  1. My heart is breaking for you. I wish I could reach you from North Carolina to give you a great big hug. There are no words...I feel so helpless. Please know that I think about you and Grace so very, very much. I will continue to pray for your dear family. Please, God, let this be the last hurdle for Grace. Let her thrive. Let her feel our love and support for her.

  2. I am praying for Grace and for YOU! I hope too that this is the last hurdle she has to face.

    Mom to Ramsey

  3. Praying for Grace......hoping she continues to fight and jump over every hurdle she has had to face in such a short time.

    Leslie, Greg and Cole
    (LCDH baby due August 2011)

  4. Praying for Grace! For a smooth and quick recovery and that you all receive a much needed break! Many prayers that your path to home gets smoother and easier!
    Mom to Dakota 12-25-2008
    RCDH survivor