A few weeks ago, Madeleine had some "muddy water" under her clear dressing cover, indicating something wasn't quite right and we did a course of antibiotics and changed to a gauze dressing to prevent infection. Over the last few weeks, we've continued to change her dressing every other day. The problem is, the little girl is
on the move! - you can't hardly contain her long on your lap or in any one space, she has to find her way to her bedroom from the living room, from her room to the kitchen - she's always exploring (
side note: Jeff and I don't exactly believe in "babyproofing;" of course we make the house safe but we don't put up baby gates and confine the kids to any one area...though I think we might be changing that soon...) As a result of her mobility and activity, as well as being picked up and/or trying to wiggle out anyone's arms, the cuff that was previously under the skin holding the catheter of her central line the last 8 months slipped out last week, and as of this weekend, is all the way hanging now and the catheter itself basically slides in and out of her bore hole in her chest, not making for the most sterile of situations. In clinic yesterday the docs and nurses took a look and debated all afternoon: she needs the line replaced. It's just far too vulnerable now.
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| double lumen catheter |
Mama will take Madeleine into radiation tomorrow morning and wait for the call from the office. Most likely the insurance will authorize the surgery and she will be admitted sometime on Wednesday and have the surgery on Thursday. If all goes well she could be discharged Thursday or Friday, all the while still attending her radiation therapy sessions and receiving the chemo. They are also strongly considering switching to a
port instead of the double lumen that she has now, very similar to a Broviac, which is most common. This is probably the best photo I have of her line after it was placed.
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| March 2012 |
This surgery will be Madeleine's 3rd central line; the first one was placed last January on her left side and was removed after the sepsis; the current and 2nd central line replaced the "dirty" one she had and they moved it to her right side and into the jugular vein; I'm not sure exactly where this next one will go. The benefits of the port seem to be much better than the double lumen in that we don't have to clean it every single day, it will be under the skin and she can take a bath (yay!) and not worry about it getting wet, and be a more "normal" kid. Bummer it has to happen now but ultimately probably the best thing she could have if she has to have it at all. So what's a few more days in the hospital after everything else? Piece of cake. Which we'll actually be missing since it's her Nina's birthday on Wednesday :( but I guess we can just make up for it this weekend. More info to come.
the path to wellness is long and arduous with ups and downs along the way as only you have come to know so well. Your writings reflect a momma in control, diligent, and dedicated to being as knowledgeable as possible (that goes for papa too). the details you offer must be very helpful to the many other parents of children in similar situations. I have also read that you have sought strength from others in their writings. The fear and the pain are there too and while it is met with hopeful light and desire to understand WHY?... with all that is said and shared, there is so much more that is not said, that we can never understand, nor need to. Just know that you will never be alone. As I am not alone in praying for Madeleine, you, Jeff, Analisse and all the other families (warriors). Please accept this as a cyber HUG that holds you tight when you might not be so strong or when you have the weight of all that is unsaid on your shoulders. Madeleine's journey and your courage continue to bring light upon us, may we all live a life that mirrors that light perpetually.
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