16 hours off vent, Reaction to meds?
That's right, 16 hours off the vent. She came off the vent at 3am and went back on about 7pm. That's three hours more than yesterday! I put the speaking valve on a couple times during the visits. This morning she was sitting in a chair, looking out the window. I put the valve on, she started coughing, then I took the valve off and a bunch of mucous came up. Same thing happened a time or two later tonight, as well. Seems to be a pattern... suction, valve, cough, mucous. Anyway, the general guideline for the speaking valve currently is that she can have it in for 5 minutes, then 15 minutes of rest. In the morning, she didn't want to watch TV (no suprise) and didn't want to hear any music (that's out of character for her). She said that if the medicine is supposed to make her feel flu-like lousy, she didn't want anyone (including me) to visit her; she just wanted to be left alone to rest (fat chance, with all the procedures being done around the clock). She indicated that she feels like she has to work harder to breathe when the valve's on. That makes sense, as her lungs & chest muscles are weak. What's weird to me is that a couple of days ago we went for an hour & a half in the morning and about the same in the evening, with the speaking valve on, no problem. Tonight she said, "I love you so much" and when talking to my aunt, she said, "I need a spray bottle by the bed" and "I get hot and want to cool off." Denise's mom is going to pick out a nice battery-operated clip-on fan for the bed so the air can circulate. Not exactly a spray bottle, but it should be some help.
In the good news department, Denise has had 15 blood cultures in a row that aren't growing anything. That's not to say that there's no pocket of infection somewhere. But the nice thing is that there doesn't appear to be anything that's gone systemic and shows up in the blood. AND the Amphotericin goal has been cut in half. Instead of going for a full gram, they're going to go for half a gram. My understanding is that they're still going to give her 60mg per day, so that should cut in half the number of days that she'll be miserable from the stuff being administered. AND (yes, more good news) tonight when asked if she felt the shakes, shivers, aches, etc., that are the side-effects of the Ampho, she said it wasn't too bad, but she was very tired. I don't know if the Ampho has a cumulative effect or not, but it sure would be nice if (a) they can pump the stuff into her without it making her feel too yucky and (b) it kicks the keister of the infection.
On the bad news end, there's still the fever, up over 103 at about 7 pm. Might be due to the Ampho, but I don't know how much more the Ampho will increase a fever that she's already running. Not exactly bad, but annoying is the word I'd use for the waiting that we have to do. Denise's parents, my aunt & I were waiting hours & hours in order to see Denise for minutes, it seems. Her dad pointed out that when the hospital says, "Check back in fifteen minutes," those 15 minutes tend to be closer to 45 minutes or an hour. I attribute this phenomenon to the hospital's being partnered with the county. The county being a government entity, it's only natural for things to take way longer than anticipated.
Here's an interesting thought: Given that there are 15 negative blood cultures in a row, they think that maybe she's having a reaction to one of the meds. The Ampho apparently will cause a spike in temp while being administered, and a little while after. But she's usually spiking fevers in the evening, well after the Ampho has stopped. Some of the meds were stopped yesterday. I don't know what else will be stopped or changed around. Should be interesting to see what happens.
The other day (Wednesday, I believe) the doctor said that he hopes to get Denise home by Christmas. She's well-worth the wait. In the mean time, she hopes to get her toenails painted. Both Denise's mom & my aunt were going to try to do the deed. Rather than fight it out, Denise smiled at the idea of each one doing a foot. Due to the waiting today, Denise's toenails are still undecorated. But she's got something to look forward to, at least. And even more than getting her toenails done in the hospital, or going back to her regular hair guy, or wearing "regular" clothes again, she most looks forward to getting a massage when she's done with this ordeal (I'll happily spring for that luxury, and I think I might need one, too).
In the good news department, Denise has had 15 blood cultures in a row that aren't growing anything. That's not to say that there's no pocket of infection somewhere. But the nice thing is that there doesn't appear to be anything that's gone systemic and shows up in the blood. AND the Amphotericin goal has been cut in half. Instead of going for a full gram, they're going to go for half a gram. My understanding is that they're still going to give her 60mg per day, so that should cut in half the number of days that she'll be miserable from the stuff being administered. AND (yes, more good news) tonight when asked if she felt the shakes, shivers, aches, etc., that are the side-effects of the Ampho, she said it wasn't too bad, but she was very tired. I don't know if the Ampho has a cumulative effect or not, but it sure would be nice if (a) they can pump the stuff into her without it making her feel too yucky and (b) it kicks the keister of the infection.
On the bad news end, there's still the fever, up over 103 at about 7 pm. Might be due to the Ampho, but I don't know how much more the Ampho will increase a fever that she's already running. Not exactly bad, but annoying is the word I'd use for the waiting that we have to do. Denise's parents, my aunt & I were waiting hours & hours in order to see Denise for minutes, it seems. Her dad pointed out that when the hospital says, "Check back in fifteen minutes," those 15 minutes tend to be closer to 45 minutes or an hour. I attribute this phenomenon to the hospital's being partnered with the county. The county being a government entity, it's only natural for things to take way longer than anticipated.
Here's an interesting thought: Given that there are 15 negative blood cultures in a row, they think that maybe she's having a reaction to one of the meds. The Ampho apparently will cause a spike in temp while being administered, and a little while after. But she's usually spiking fevers in the evening, well after the Ampho has stopped. Some of the meds were stopped yesterday. I don't know what else will be stopped or changed around. Should be interesting to see what happens.
The other day (Wednesday, I believe) the doctor said that he hopes to get Denise home by Christmas. She's well-worth the wait. In the mean time, she hopes to get her toenails painted. Both Denise's mom & my aunt were going to try to do the deed. Rather than fight it out, Denise smiled at the idea of each one doing a foot. Due to the waiting today, Denise's toenails are still undecorated. But she's got something to look forward to, at least. And even more than getting her toenails done in the hospital, or going back to her regular hair guy, or wearing "regular" clothes again, she most looks forward to getting a massage when she's done with this ordeal (I'll happily spring for that luxury, and I think I might need one, too).
posted by Phil and Denise Williams at 11:03 PM
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