Bronwyn is still having fluid leaking on her right lung. They have tested it and it has kylo in it - which means that her lymph system is leaking. This is a common side effect of the Fontan. So she has to go on a low fat diet and they hope to control the fluids that way. If they can get the fluids to stop then she is closer to getting home but the diet will have to continue for some time.
I found this pretty upsetting, not because I'm upset she has a complication. It is more that I am afraid that this is a domino affect. She isn't eating well and we have to force her to drink. The only things she has been willing to eat will now be cut out of her diet. I'm just worried she'll start having problems with her food and liquids and then they'll have to use an IV and then we are just on a different and somewhat downhill track from there.
But that is just me being pessimistic. I am also feeling pretty sick. This is the worst head cold I have had in ages. I'm too afraid to spend much time with Bronwyn. I am hoping that a good night sleep will do wonders for my cold and my attitude too.
Just pray for our little girl. I really want to get her home in time to take her to the Wiggles. Even now she keeps mentioning the concert - she is really excited. I just want her to be home.
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4 comments:
Oh Berta
My heart is with you and your precious little princess. And I am now with you on the WIggles. I get it!!
I know this has been a dreadful and scary time for you and getting the cold is a nasty bit of business. Hugs and prayers, prayers. prayers. Sorry I missed your call last night. Love you all very much and begging God to bring you all safely home very soon.
My heart sunk when I read your blog. I can feel your pain and discouragement. God is in control and you will get through this. We're praying for you and so are tons of other people. I pray you can feel that encouragement away up in Edmonton! Thanks for taking the time to update.
Love, Hope
Thinking of you, Roberta... and your beautiful little girl. They will take good care of your sweetheart. What sort of things is she allowed to eat? Is she allowed a low-fat icecream or is some of that artificial stuff off the list? Jello is low fat. When I was in the hospital when I was 8 I remember the jello. Yummy. And it wiggles. Sounds like she likes stuff that wiggles. :-) You might be able to make jello with gatorade and get some electrolytes in there too, I think. Does she have a favorite color? Sounds like mommy could use some wiggly jello too. Thinking of you all. Wishing I could bring you some jello. Love from Cat, Rick and Alex.
Roberta,
Hope things turn around. I'm sure that she'll come around and get more interested in what they offer her in terms of food.
Still thinking of you often,
Danny, Jennifer, Eric and Sarah
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