Friday, June 26, 2009


Around 9am we met with the surgeon and Haven was headed to recovery. The surgery went very well - no complications. He was able to get the line in to her left jugular and the other line is playing perfectly in her artery to her heart right next to the line for the other port.

We like this surgeon because he is "real". He tells it to us straight and will tell us when we're crazy. He has remained informed over the past 1 1/2 years on Haven and how she is doing. He told us this only marks an extremely rough road ahead for Haven. His sincerity and concern truly make us confident in doing any of Haven's surgeries.

He did warn us that he is now out of locations on her body to put in any more equipment. As he said - "we are out of room - no more ports!" Believe me, we don't want any more ports either.

He thanked us for allowing him to care for Haven and to be part of her life and he looks forward to the day when she is no longer at Hopkins.

Hopefully in about 4 months she will only need one more surgery to remove the Hickman line (Central Line) from her chest as the risk for infection is so high we don't want it in there.

Thank you Dr. Price and thank you to your dedication to medicine....without your extreme skills my baby wouldn't be in the best hands! We owe you a lot!

Here is Miss Haven and her latest smile. She has decided that this is the new smile. Really - it looks like she's just puckering her lips but this is the only way she would smile for the camera.

This was taken around 1pm. This is the first time ever that we were not able to remove the oxygen line from Haven. She was out of surgery at 9am. Every time the nurses would test her O2 levels by removing the line she would immediately drop in to the low 80's. So we had to keep this on until she remained stable at 92.

You can see by this picture where the incision is at her jugular on her left side and her newest port in her chest. She is extremely cautious of this new port and will not walk fast at all. I was able to sponge bathe her and get all the orange iodine off her body.

Around 3pm she was well enough to go to the playroom. Little did I know we needed to have the mask on if she leaves isolation and we had to have her room door shut tight! The nurse let me know immediately and she put the mask on Haven. So I won't forget that next time.

Haven loves to do puzzles so we worked on a Spongebob puzzle. During this time I also met with Haven's 3 new Oncologists. They work in the Inpatient Oncology wing. Dr. Jennifer, Dr. Farah, and Dr. Chen. We'll be working with them a lot during these next few weeks.


  1. I would love to do a puzzle with Haven. She looks like she is loving life even with all that she has been through. I hope that she gets to the point where she can be the happy kid she already is, just without the hospital. Keep you spirits up!!1

  2. Happy to hear that she came through the surgery so well. We will be praying for your brave girl over the coming months.
    big hugs.

  3. Haven looks great... remind the doctors to especially look at her CO2 levels when she's on oxygen. If the problem is she isn't ventilating good, the oxygen can just cause her CO2 to grow higher which could lead to respiratory failure. It may not be a problem, I'm just being cautious. Anyway, give Haven a hug for me. She is such a brave girl!

  4. My little Havey looks great I am so happy the surgery is over and she does not have hepatitis B. This chemo thing please work. Haven deserves a childs life of playing and someday going to school; she is so smart already. Haven has to be one of the best patients around. I love you very very much.
    Aunt Candy