First let me apologize for taking such a long time to update. It has been a hectic week.
Monday night during her bath we noticed some minor swelling and seepage at Baileys shunt site. On the advice of the nurse line we took her to the E.R. to get checked out. By the time we got there the swelling had become superball sized and was visibly growing quickly. She was taking in for imaging that showed her shunt was operating properly and not broken. The fear is infection, but there is a chance that it's nothing and just happened because her skin is so thin and the fluid levels are to great for everything to drain from the shunt right away. CSF being liquid takes the path of least resistance and got in around the shunt. This of course is the ideal outcome.
But because we don't know and she was lethargic and grouchy she was admitted back to the NICU after only 30 hours of freedom.
They have her on aggressive antibiotics as a precaution and have taken every kind of fluid from her to culture for infection. So far nothing bad has shown up. There is some concern about the CSF they took as it shows elevated white cells. But day one of a 3 day culture was negative for infection. We still have to wait the full 3 days to be sure though. Because of the elevated white cells, they are going to re-tap her shunt resevoir and start another culture. So we know that we have at least another 3 days after today before she can try going home again... if an infection turns up she will need to have her shunt revised and of course that being a repeat brain surgery she will be here longer.
We got the results of her last echocardiogram and there was no change, so there is still some real concern from her doctors about whether her aortic artery is narrowing. If it is they are talking putting a stint (? The thing that opens arteries) in. I don't know what all that entails yet but am hoping it's fairly safe and easy and not actually heart surgery. Bailey has been through enough already.
The good news is that the antibiotics seem to be doing some good for her and she seems to be feeling a little better. She is awake for longer periods and a little less grouchy. They have her on Tylenol because she seems to be in pain, so hopefully that helps her improve further.
Until the results of all cultures come in, we are in a holding pattern here.
Angie. A heart stent is a minimally invasive procedure where a small incision is made in the groin and using a large iv type catheter they insert a tiny wire into the heart to check for narrowing or blockages in the arteries and are able to insert a stent in this manor. If a stent is placed Bailey may or may not be on blood thinners to keep the body from forming clots around the stent. But it can be a life saving procedure that avoids any open heart procedures/surgeries. I hope this does not have to be done because there is always risk involved as it requires light sedation in adults. Not sure how done with infants. Anyway I hope this helps explain what is involved with heart stents. Luv u guys and praying she does well. Aunt Taunya
ReplyDeleteThank you for that information. That sounds a whole lot better than anything I was picturing. I hope she doesn't need anything at all done to her heart but that sounds better than a surgery any day.
DeleteThank you for that information. That sounds a whole lot better than anything I was picturing. I hope she doesn't need anything at all done to her heart but that sounds better than a surgery any day.
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