Attempting 24 hours off vent, High fevers, Shopping challenge
Big positive news today is that Denise is going for 24 hours off the vent! She was taken off at about 1am this morning. Put back on about 11:30 or 12 noon. Then they were going to take her off at about 4pm and see if she can go until 4pm tomorrow. She was encouraged to hear that she's going doing well enough that she's going to attempt a full day off of the vent.
Negative news today is that her fevers went to 105.1. I didn't see that... the range I'd seen today was between 101.4 and 103.7 (just tonight... she was sound asleep, off the vent, heart rate bouncing between high 120s and 145, O2 saturation between 91 & 98).
Earlier tonight, she got another paracentesis that drew off a little over 2 liters of fluid. I need to check, but I think the trend is longer time between draws, and relatively less fluid given the number of days that the fluid has been building up. Anyway, that fluid will be sent for cultures. They're also keeping eyes on results from the spinal tap (and everything else), trying to see where that infection might be hiding. Several infectious disease doctors will be consulted. Also, a cardiologist has been brought into the picture to try to figure out why Denise's heart has been racing for so long. Pretty smart bunch of guys already. Pray for even more wisdom & insight for them, as well as the doctor in charge of Denise.
When I was visiting during the daytime, Denise got a new tracheostomy assembly inserted, and she did great during the procedure. Thank you to the staff & doctor for letting me come in, stand out of the way, shut up, and watch. It was interesting to see the gizmo that's been in her throat for so long. When it was changed out, the doctor covered the hole with his finger and asked Denise to repeat a few things, which she did very well. With the hole covered, she had to breathe through her mouth, which was a little weird for her after sucking air through the trach for long. She was alert (though not really very expressive or animated). She was responding appropriately to questions. The USC chaplain came by & prayed with us (he's been in to visit Denise frequently... we've just been missing each other). Prior to his visit, Denise was really trying to tell me something that I couldn't figure out. During his visit, the nurse came in and said that she would help Denise talk. So she pulled out part of the trach assembly (I'm guessing the inner canula?) and covered the hole with her finger. Denise was telling us about some pretty ugly stuff that she thought was happening to her, and so once again I found myself explaining that the doctors & nurses have her best interest in mind. I explained that the meds, fever, unpleasant procedures, and lack of rest might be causing some temporary confusion and very vivid nightmares for her. I told her about a couple of people we know that said they also had weird dreams while in the hospital for extended amounts of time. After a while, she seemed to believe what I had to say. Then she tapped the nurse on the arm to get her attention & said, "I just want to reiterate that I don't want you to do anything bad to me." The nurse graciously agreed. I thought it was kind of cute that, even when half out of her mind, she still used the word "reiterate." Most people don't use that word, even when they have all their marbles. She indicated that she wasn't feeling that bad from the Amphotericin (yay!), and wanted me to stay a while. But by about 2:30, she said she was tired and was ready for me to go away. So I did.
When I got home, it was raining pretty hard, but was a nice 71 degrees outside. I picked up the kids from day care and walked home. Gracie was jumping over the worms on the concrete; Jacob was stomping on every one he could find. The kids, the dog & I splashed in puddles in the back yard while it was still raining. Gracie said it was "like the state we flew to" (Tennessee: raining, but not cold). Puddles are easy to find in our back yard. With Denise gone, and our lives being turned on end for a few months, the dog isn't getting any attention, and has dug the heck out our lawn. Right after it rains, our yard looks sort of like an aerial view of Wisconsin.
There was a great thing that happened the other day that recently came to my attention. Last week the prayer moms from my school were visiting Denise. By the end of the visit, she was exhausted (due to procedures during the visit, not due to the visit itself). She had the speech valve in and was so encouraged by their visit that she told them, "I will get up and walk." And the sooner, the better.
Apartment found! Denise's folks found a place near the hospital that seems to suit their needs. Thanks for the posts & email offering ideas. Looks like that's one more thing we can check off the "to do" list. They were also blessed with a loaner car that gets great fuel economy, and gives a smooth ride.
Shopping challenge: Denise is allowed to have a battery-operated fan in her room to circulate the air. I went to Brookstone to look for a specific fan I'd seen a while ago. They don't carry them anymore. So help us out here, people. We need a fan that runs on batteries, can clip onto a hospital bed rail, and preferably has a gooseneck and blade guard. If you see one somewhere, let us know so we can go get it.
Negative news today is that her fevers went to 105.1. I didn't see that... the range I'd seen today was between 101.4 and 103.7 (just tonight... she was sound asleep, off the vent, heart rate bouncing between high 120s and 145, O2 saturation between 91 & 98).
Earlier tonight, she got another paracentesis that drew off a little over 2 liters of fluid. I need to check, but I think the trend is longer time between draws, and relatively less fluid given the number of days that the fluid has been building up. Anyway, that fluid will be sent for cultures. They're also keeping eyes on results from the spinal tap (and everything else), trying to see where that infection might be hiding. Several infectious disease doctors will be consulted. Also, a cardiologist has been brought into the picture to try to figure out why Denise's heart has been racing for so long. Pretty smart bunch of guys already. Pray for even more wisdom & insight for them, as well as the doctor in charge of Denise.
When I was visiting during the daytime, Denise got a new tracheostomy assembly inserted, and she did great during the procedure. Thank you to the staff & doctor for letting me come in, stand out of the way, shut up, and watch. It was interesting to see the gizmo that's been in her throat for so long. When it was changed out, the doctor covered the hole with his finger and asked Denise to repeat a few things, which she did very well. With the hole covered, she had to breathe through her mouth, which was a little weird for her after sucking air through the trach for long. She was alert (though not really very expressive or animated). She was responding appropriately to questions. The USC chaplain came by & prayed with us (he's been in to visit Denise frequently... we've just been missing each other). Prior to his visit, Denise was really trying to tell me something that I couldn't figure out. During his visit, the nurse came in and said that she would help Denise talk. So she pulled out part of the trach assembly (I'm guessing the inner canula?) and covered the hole with her finger. Denise was telling us about some pretty ugly stuff that she thought was happening to her, and so once again I found myself explaining that the doctors & nurses have her best interest in mind. I explained that the meds, fever, unpleasant procedures, and lack of rest might be causing some temporary confusion and very vivid nightmares for her. I told her about a couple of people we know that said they also had weird dreams while in the hospital for extended amounts of time. After a while, she seemed to believe what I had to say. Then she tapped the nurse on the arm to get her attention & said, "I just want to reiterate that I don't want you to do anything bad to me." The nurse graciously agreed. I thought it was kind of cute that, even when half out of her mind, she still used the word "reiterate." Most people don't use that word, even when they have all their marbles. She indicated that she wasn't feeling that bad from the Amphotericin (yay!), and wanted me to stay a while. But by about 2:30, she said she was tired and was ready for me to go away. So I did.
When I got home, it was raining pretty hard, but was a nice 71 degrees outside. I picked up the kids from day care and walked home. Gracie was jumping over the worms on the concrete; Jacob was stomping on every one he could find. The kids, the dog & I splashed in puddles in the back yard while it was still raining. Gracie said it was "like the state we flew to" (Tennessee: raining, but not cold). Puddles are easy to find in our back yard. With Denise gone, and our lives being turned on end for a few months, the dog isn't getting any attention, and has dug the heck out our lawn. Right after it rains, our yard looks sort of like an aerial view of Wisconsin.
There was a great thing that happened the other day that recently came to my attention. Last week the prayer moms from my school were visiting Denise. By the end of the visit, she was exhausted (due to procedures during the visit, not due to the visit itself). She had the speech valve in and was so encouraged by their visit that she told them, "I will get up and walk." And the sooner, the better.
Apartment found! Denise's folks found a place near the hospital that seems to suit their needs. Thanks for the posts & email offering ideas. Looks like that's one more thing we can check off the "to do" list. They were also blessed with a loaner car that gets great fuel economy, and gives a smooth ride.
Shopping challenge: Denise is allowed to have a battery-operated fan in her room to circulate the air. I went to Brookstone to look for a specific fan I'd seen a while ago. They don't carry them anymore. So help us out here, people. We need a fan that runs on batteries, can clip onto a hospital bed rail, and preferably has a gooseneck and blade guard. If you see one somewhere, let us know so we can go get it.
posted by Phil and Denise Williams at 10:57 PM
2 Comments:
Hi,
You don't know me and I'm not exactly sure where I heard about your family's situation, but I've been earnestly praying and reading all of your posts and updates about your wife. I continue to pray for her complete healing and restoration daily.
Here is a battery operated gooseneck fan that is on Ebay. The auction ends in 10 hours. Maybe that would work!
http://cgi.ebay.com/A-Solar-Powered-Clip-On-Fan_W0QQitemZ5624421541QQcategoryZ1467QQssPageNameZWDVWQQrdZ1QQcmdZViewItem
Prayers and blessings,
Cathy
Phil,
I have a fan like you are looking for - it's meant for a baby stroller, but should work well and be safe. Let me know how best to get it to you - bring to your house; leave in the office at PCS; whatever...... (as soon as we get home from Bakersfield)
Love & prayers, Kathy Prosser
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