Lily update
Lily is doing tremendously better. Still sick and will be in the hospital for at least several more days, but is much much better.
She was in medical shock most of the day Saturday and some of the day Sunday. Heart rate of 180's-200+, fever between 102-106, respiration's of 28-35+, completely awful blood pressures (like, one on Saturday was 77/25).
Her CVL (the IV cath she has that goes into her heart) grew yeast, which really really sucks. It's hard as hell to get rid of and most of the time, growing yeast is an automatic line removal. Which also sucks really bad. Really bad.
- Lily is TPN dependent. She gets an insignificant amount of calories and hydration though her GJ tube. Most days, nothing. Some days, only up to 200 mls, which is only, at most, 130 calories. So, nothing that could ever sustain her. She would get severely dehydrated and start dropping weight again if she wasnt' on the TPN. She is unable to currently survive without it.
- Her TPN, as is currently is, cannot be run through a normal IV. In order to run it through a normal IV, everything in it would have to be changed. Even then, TPN is bad on veins and she would quickly blow any normal IV it would run though. She has very few veins, so after blowing a couple, they'd be out of spots. That would take probably a week, at the absolute most.
- They cannot put a new CVL in until they get a solid 48-72 hour culture that does NOT grow yeast. And if we didn't want the new line in some weird spot, we would also have to wait for the old spot to heal up. Which could be weeks. Even then, that vein is very likely done for completely if they have to pull her CVL.
- A port isn't an option at all with her. A PICC is, but I really don't want to bring her home on a PICC, then have to go back in for surgery again later. Especially because the PICC would likely end up ruining her only good arm vein.
The bad thing about not pulling it and just using the antifungals is that yeast attaches itself to anything it can. Intestinal walls, organs, and especially things like the plastic cath that the CVL is made of. Even if we clear the yeast from her blood and get clear cultures, it can stay attached to the CVL and she could end up with another infection as soon as she's off the antifungals.
We have a meeting with her Dr's tomorrow to discuss the pro's and con's of both. My main question for them is, "If we don't pull the line and she gets clear cultures, what are the actual chances of her getting a recurrence that isn't actually a brand new infection?"
I mean, if it's only 5%, then it's obviously not worth it to pull the line. If it's 70%, then we'd pull the line.
I hate making decisions.
She was in medical shock most of the day Saturday and some of the day Sunday. Heart rate of 180's-200+, fever between 102-106, respiration's of 28-35+, completely awful blood pressures (like, one on Saturday was 77/25).
Her CVL (the IV cath she has that goes into her heart) grew yeast, which really really sucks. It's hard as hell to get rid of and most of the time, growing yeast is an automatic line removal. Which also sucks really bad. Really bad.
- Lily is TPN dependent. She gets an insignificant amount of calories and hydration though her GJ tube. Most days, nothing. Some days, only up to 200 mls, which is only, at most, 130 calories. So, nothing that could ever sustain her. She would get severely dehydrated and start dropping weight again if she wasnt' on the TPN. She is unable to currently survive without it.
- Her TPN, as is currently is, cannot be run through a normal IV. In order to run it through a normal IV, everything in it would have to be changed. Even then, TPN is bad on veins and she would quickly blow any normal IV it would run though. She has very few veins, so after blowing a couple, they'd be out of spots. That would take probably a week, at the absolute most.
- They cannot put a new CVL in until they get a solid 48-72 hour culture that does NOT grow yeast. And if we didn't want the new line in some weird spot, we would also have to wait for the old spot to heal up. Which could be weeks. Even then, that vein is very likely done for completely if they have to pull her CVL.
- A port isn't an option at all with her. A PICC is, but I really don't want to bring her home on a PICC, then have to go back in for surgery again later. Especially because the PICC would likely end up ruining her only good arm vein.
The bad thing about not pulling it and just using the antifungals is that yeast attaches itself to anything it can. Intestinal walls, organs, and especially things like the plastic cath that the CVL is made of. Even if we clear the yeast from her blood and get clear cultures, it can stay attached to the CVL and she could end up with another infection as soon as she's off the antifungals.
We have a meeting with her Dr's tomorrow to discuss the pro's and con's of both. My main question for them is, "If we don't pull the line and she gets clear cultures, what are the actual chances of her getting a recurrence that isn't actually a brand new infection?"
I mean, if it's only 5%, then it's obviously not worth it to pull the line. If it's 70%, then we'd pull the line.
I hate making decisions.