Well its been a week of it!!!
Weds 4th - Cody's hickman line is blocked. An emergency phone call is put through to Auckland and a trip to Nelson Hospital to await Auckland's instructions. We all know how much Cody dislikes hospital...........let alone Nelson hospital. So he was not a bundle of laughs to anyone. The decision is that Auckland medical team will meet on Monday and decide when to bring him back up to Auckland. He now has no choice but to go ahead with the fistula operation on his arm. Its no ones fault that the line got blocked. It appears that Codys blood clots too fast. Even with all the anti clot meds he takes. So it is no long viable to use his hicmans. At the moment he is feeding TPN via the fluids link into the hickmans but this is not suitable.
Then to top it all off - Codys best mate Kayne ( my son ) ended up in hospital that night with a burst appendix and had to have an emergency operation late that night to remove it. So Cody came up and sat with Kayne and reassured him all would be fine. It was a real eye opener for Cody to be on the other side and feeling how we all feel when its him on the hospital bed. Cody was able to explain to Kayne why he was feeling so ill and what it will be like when they put you to sleep. Kayne was so thankful as it was his first operation and it was very reassuring for him.
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My son, Levi, had malrotation with a volvulus when he was just 2 weeks old. He lost all but 3 cm of small intestine and 10% of his large intestine. He was listed for a small bowel, liver and pancreas transplant in November 2007. (It took that long because he didn't weigh enough. 12 pounds is about the smallest they like to transplant.) We have been through the line infection, many hospital stay, TPN dependent, liver damage cycle of life. He got transplanted in March 2008. He is doing well. We didn't think he would make it to his first birthday and now it is just around the corner. Have faith and hope. If you want to talk to someone who knows what you are going through, my email is llg12480@aol.com@aol.com. I also have a website with a journal of Levi's life so far. www.levishawn.com
God bless you and hang in there.
Laurie
Levi's mommy
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