Theft, Oxygen episode, Paranoia, New Room, Party

Been a very busy & exhausting two days. There are some disturbing things that Denise has said, but her overall physical progress seems to have improved. Let me start at the beginning...
Yesterday (Friday) morning I arrived at the hospital and heard Denise's dad's voice around the corner, saying "I think it's heart failure." My heart sank. I found him talking on the phone. He hung up and related the following to me:
Thursday, sometime between 4:30-6:30pm, Denise's mom's purse was taken from where it was setting just outside Denise's room, then found a few feet away with all money gone and social security card gone. They don't need this, as they're already trying to stay near the hospital during the week, and money's tight.
Then he told me about a conversation he had with Denise earlier Friday morning. She said very adamantly (off the vent, with the speech valve on) "They're trying to kill me" and some other disturbing things, which resulted in only female nurses being assigned to care for Denise as a precautionary measure. Her heart rate was around 140, then the wound dresser came, Denise got red-faced, and her heart rate soared to the 150s. She started to "space out," her heart rate dropped to 44 for a moment, eyes rolled back, oxygen saturation dropped to 72%, and she started gasping. The speech valve was promptly removed and Denise was put back on the ventilator. Very quickly, her heart rate recovered and oxygen saturation returned to the high 90s. The doctor suspected a problem with the speech valve, and the respiratory therapist suspected not. I asked Denise's dad if perhaps Denise was coughing and perhaps got mucous stuck in the valve which may have blocked the valve's ability to take in air. He thought not, and said that he even rinsed the valve out and put it on by himself, and there was no mucous (he watched the respiratory therapist do it and he said he did it the same way). By the way, think of a kazoo... the speech valve looks sort of like that little round part with the membrane in it... we're supposed to rinse the valve in such a way as to not let water directly hit the membrane... that's why I even mentioned rinsing in the first place. And for those that have been asking, it's a Passy-Muir 2001. Later in the day I asked if the valve was bad, and one person said that it was sent for evaluation because it was suspected that it was bad. Then later in the day another person said that the same valve was in the room, right by the sink. So when it's all said & done, I don't know. But Denise was OK in the breathing department yesterday, being off the vent more than on during waking and non-waking hours. And today, she was off for 13 hours straight, and they've had the speaking valve in a few minutes (5-15) at a time every hour or so.
Back to what happened... I asked the doctor about Denise's "crash." He said that he wouldn't call it a crash. He said that it wasn't a heart problem at all... it was an oxygenation problem, and he sees it at least once a day. If it were a heart problem, she wouldn't have gotten better that fast. *whew* Heart's still not great, but he still felt that once the infection's found and whipped, the heart will fix itself over time. *whew* again.

Because of what Denise was saying to her dad in the morning, we talked about sleep deprivation causing paranoia, or nightmares, or the Amphotericin causing bad hallucinations, and all sorts of possibilities. Her dad thought it might be good to spend the night with Denise, just to be support. So last night I went to the hospital to spend the night. At 8pm they gave her some Ambien to help her sleep, then proceeded to move her from room 704 to room 714. Needless to say, the commotion kept her awake. During the time I was with her, she was saying some really off-the-wall, disturbing things (paranoid about the doctors & nursing staff, worried for her mom, among other things). She was really frightened. I'd pray with her and she'd fall asleep (either I have a calming presence or I'm one boring prayer warrior), or at least close her eyes & be calm. Then she'd jerk awake/alert and start to talk about more weird & horrible things . She did this with the cuff inflated... we suspected aleak but they said it might be a positioning issue. Finally she seemed to be sleeping for a fairly long stretch and the nurse came in to say that she got permission to administer Ativan, but didn't really want to, now that Denise finally seemed to be zonked out. I think she saw Denise's pattern of "sleeping" & jerking awake, so the nurse did decide to give the Ativan, which kept Denise asleep for several more hours. So I went home around 2am this morning. When it's all said & done, me being there last night didn't seem to make much difference, but the Ativan did.

Today I was so tired that I had someone else drive me to the hospital each time I went. In the morning, Denise was very upbeat. She was sitting up in her bed, I got to hear her speak a little with the valve, and her responses during conversation were appropriate. So it seemed that the sleep did some good. My aunt was taking off Denise's old toenail polish and rubbing her feet, and Denise was definitely enjoying that. She even stuck her tongue out after the nurse swabbed her mouth with the minty sponge (Denise would love to just be able to drink plain old water). At one point, Denise said that she had to go to the bathroom. I asked if she was embarassed and wanted us to leave. She said, "Please leave." So we did. When we came back, she was cleaned up, but tired. They were also starting to pre-medicate her for the Amphotericin that was to come, so we went home and let her rest. More on the medication schedule, the side-effects, and how that relates to visiting hours will be addressed below.

Gracie had her birthday party today. Many thanks to everyone that helped out with the planning, food, cake, decorations, shopping, tables, chairs, and every other aspect. I can't say enough about how great a party this was today. I didn't lift a finger for this bash. Gracie loved her fiesta, and Jacob seemed to like it, too. The food was definitely his favorite. We had Mexican food made by gringos, and believe it or not, it was really good. I'm confident that people will understand if I'm a little slow in helping Gracie get her thank you notes out. Hmmm... I still haven't written thank you notes for my birthday in September. In fact, I think I have a bazillion thank you notes to write for all the support my family's received during the last three months. Really, I'm not an ungrateful jerk... I'm just pretty busy. Tonight after the birthday party, a friend told me that the people in her Bible study were talking about what an inspiration this blog is, and what an inspiration I am. Thanks, but I'm just another guy that wants his wife home from the hospital.

After the party, I went back to the hospital again. Denise had her eyes closed, forearms up when we arrived (about 8:20pm). The nurse told us that she was just going to give Denise her sleeping meds (Ativan) but would wait until our visit was done. We made it a very short one... maybe 20 or 30 minutes. My aunt came in for about 5 minutes, then spent the rest of the time getting info from the nurse. I prayed with her (that's been a given for 3 months, by the way... just assume that for every visit). I told Denise about the party, that I'd show her the video of it and the Disneyland trip tomorrow, she asked what Gracie got for the birthday, and a few other things. She squeezed very few words around the tracheostomy cuff and was fairly mellow. It was apparent that she was trying to stay awake while I was there, so I told her I was going to go. Then she told me that she's wearing purple underwear. I asked her if she wanted that, and she said, "No." I asked if they're making her wear purple underwear, and she said "Yes." I told her that when she's done, she can go shopping for whatever color underwear she wants, but in the mean time, I was going to leave, go outside, and tell the nurse not to make her wear a color of underwear that she doesn't like. Denise nodded and smiled. Easy night, and that was the extent of the paranoia. I asked if she wanted me to come again in the morning and she shook her head "No." I asked if she wanted me to let her sleep in and come later, and she nodded. As I was taking off my mask, gloves, & gown, she already had her eyes closed again, forearms raised up, like they had been most of the visit. Hopefully, she'll be able to rest again tonight, and we won't have to deal with her nightmares, hallucinations, or whatever else it was that she's been experiencing.

About the meds & visiting:
Over the next two weeks or so, the plan is to start giving Denise the Amphotericin at about 12 noon, dripping in over about 4 hours. I've stated before that in the past, she's had Ampho B, which is gentler. This time, she's on a regimen of straight-up Amphotericin, which is temporarily brutal. She'll have chills, fevers, aches, and generally be miserable & irritable during & after. Before the Ampho, they're going to pre-medicate her with Benedryl, which will hopefully mellow her a little and lessen the nasty side-effects of the Ampho. They're trying to get her on a normal day/night sleep cycle, which tends to help healing. So she'll be getting some Ativan sometime after 8pm each night, which will knock her out. Add in the shift changes, and she'll probably only be up for visitors only during the morning hours, say between 9-ish (she likes to sleep in) and noon-ish. The rest of the time, she'll probably not want to have visitors (she feels obligated to play hostess), or she'll need to sleep (please do not disturb... she wakes up to squeeking sneakers in the room).

As far as other meds, they've discontinued the Zyvox, Amikacin, and Primaxin. She's on Zosyn (pipperacillin & tazobactam), Ampho, and Vfend. She's also on colymycin, which is an aerosol in the vent nebulizer that's supposed to nail the pseudomonal infection. The Digoxin was increased to 0.25mg/day. She's on an alternative/complementary therapy substance called Glutamine, which is claimed to assist the immune system & protect the bowel, among other things.

Sorry for the long post. That's what two days will do to us. The concerns are still finding the infection, dealing with the Ampho side-effects, and maybe still the paranoia. But at the end of the day, she seems to be better today than she was two weeks ago. So for that, I'm thankful.

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