Kids visit USC Hospital for first time

Late this afternoon we got the OK to let the kids visit Denise! We had to put the kids in gowns & gloves (Denise wore the mask), but they got to see mommy for the first time in about a month & a half. I brought home the garb a few days ago so that Gracie could get used to suiting up. As it turned out, Jacob was the first to see Denise tonight. As with every visit, he was a little apprehensive, but did well considering that he's only 18 months old. He recognizes Denise when I play the videos of her in the hospital on TV, but he took a long time to warm up in the hospital setting. It wasn't until the end of the visit that he started blowing kisses. Gracie just snuggled right up, no problem. She still wants to be a nurse, or maybe a doctor.

Since there are no longer all the monitors that were hooked up in the ICU, it's harder to know what all the stats are. She looks stronger, voice is sounding more & more normal, and she's not feeling "out of it" as much.
The current concerns that I'm aware of are:
- vomiting: it's hard for her to hold much down. My understanding is that she is still eliminating, at least.
- vision: she's due for another eye exam in the coming days, and her vision's still blurry, even with glasses.
- ab swelling: possibly due to lack of protein. She needs to wait to have fluid drawn off until blood thinner meds are lowered or discontinued. In the mean time, the swelling is putting lots of pressure on her innards, possibly adding to the vomiting issues.
- heart rate still fast
- regular hospital room care: Being out of ICU is a two-edged sword. She's not bad enough to be in ICU. Great. But on the floor, each nurse has to take care of more patients. So Denise gets to feeling pretty rotton during the waits at time.

Yesterday she told me that while she was in ICU and feeling really loopy, she thought that my hair looked just like meatloaf. She's been going without food for WAY too long. She also told me again to not put up all the cards. She was worried that other patients would think she was being obnoxious. She joked, "Look at all the cards I have up! Look at how important I am!" Darn tootin'! Still, I'm abiding by her rules and keeping the walls modest (in this case, modest means NOT covered up). I only have photographs of her & the family up so that the caregivers can see what Denise looks like when healthy.
Also yesterday we did an art project wherein Gracie colored some circular sheets of paper. Later on we'll send them to a company that puts the designs onto plastic plates. Last night Gracie really wanted to go to the Saturday night service instead of waiting until Sunday morning. So we went, dropped off Jacob in the nursery, but Gracie was feeling clingy and wanted to stay with me for "big church." When they took up the offering, she got all excited about getting to pass the plate by herself. Today she wanted to make another design to be turned into a plate. This time she did a big red circle in the middle with yellow all around the edges and told me she was "trying to make a money plate like from big church."

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Details: Out of ICU, Trach gone, Bear bile

Good morning! Here are details to accompany last night's headlines about Denise's day yesterday:

Her temp spiked at 101 (curve continues to lower), and she reached a "normal" 98.7 for the first time in months! We hope this indicates that the infections are subsiding or done. Heart rate ranged 91 (relaxed) -122 (when in pain or working out). Blood pressure ranged 104-116 systolic, and she no longer has to wear the cuff 24/7. She needed no oxygen while sitting upright (which she spent several hours doing), and only needed .5 liters while laying down (and saturating at 95% during that time). Earlier in the day she said that she felt like her nose & ears were clogged, but by the evening, she felt all clear. She did vomit yesterday, but I was there for it and saw that the first thing up was a big ball of phlegm, then the food (let's see... cranberry juice, jello, broth... I think in that order). Denise said she wasn't nauseated... it only happens because of the thick mucous. I heard a suggestion to suction her well a while before she begins eating, and eat one small course at time to keep the hurling to a minimum. We shall see.
The liver people came in today (somebody please post the correct name for a liver doctor) and said that her liver is enlarged but should shrink back to normal size over time. The liver numbers are abnormal, but they are heading toward normal. There have been "blips" in those numbers, however. Apparently there's sludge in the bile, so they're giving her ursodiol, or "urso" as the docs call it. It's a naturally occurring bile acid. We have it, but bears have even more of it. Think about it... ursa major, ursa minor, urso... So she's getting bear bile to correct the sludge problem. Pretty cool, huh? If she starts pilfering picnic baskets, we'll know why.

During PT, she stood up 3 times. This is the first time she's stook in months. She likes that the sneakers helped her ankles regain their bends. But she doesn't like wearing them when she's laying down, because they're too heavy for her to be able to exercise in. She's strong enough to use weighs for arm exercises (a flashlight... a drink can...) with the OT. The PT also does wound care for her bedsore. Yesterday they put in that custom-fit sponge that's hooked up to a vacuum pump. Denise says it feels weird & hurts, but so does everything. Along the lines of her being able to verbalize what she's going through, I received an email from a prayer mom (actually, one of them's not a mom from my school... she just got lumped in with them). She said that while it was thrill for them to hear Denise finally able to speak, it was heartbreaking to hear her express her pain & discomfort. Bittersweet, for sure. She is being offered pain meds, but she hates feeling "out of it" and refuses unless it's unbearable.

Her trach was removed, and the hole bandaged earlier yesterday afternoon. Her mom & her kept it as a surpise for me to discover during my evening visit. Sneaky stinkers. But it was a wonderful surpise indeed! When I noticed, she said, "Surprise! Yay!" and clapped her hands. She says it feels much better without the trach, and it's even easier for her to breathe & speak. Last night when we were praying, she prayed out loud for the longest time she has since going into ICU.

Denise's biggest news was the move off of the critical list, out of the ICU, and into a regular hospital room. That's a milestone. Seems like a thousand-milestone. They even let me help participate in the move (thank you!). Now she's in a private room (the chaplain pointed out that we can close the door & curtains... hubba hubba (Go, Chaplain!). The procedures are mostly limited to the daytime. Things will be dim & quiet at night. There's a big window with a view of the city lights at night, and probably just smog during the day. This room is even smaller than the ICU room. My fears of running out of wall space were quelled when Denise said that she didn't really want me to put up all the cards again, since she can't see them anyway. Instead, we came up with the plan of having some photos printed up poster-sized and putting those on the walls.

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Out of ICU, Trach gone, Stood up, Normal temp

I'm exhausted and will provide details tomorrow. But today's progress was so great, I couldn't wait to post the headlines:

-Moved out of the ICU and into a regular room!
-The trach was yanked!
-Stood up 3 times with help from PT!
-Temperature hit 98.7!

Room 753 - must still wear gloves, gown, mask
Preferred visiting hours are 11am-9pm (she's been asleep by 8:30 lately)

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Move on hold, Bedsore vac on deck, Massage,

Denise hasn't been moved to another room yet. She threw up what the nurse said appeared to be undigested medicine. She won't get to move out of ICU until she stops doing the technicolor yawn. So she drank barium and went for the x-rays. She wanted me to be sure to point out that she not only drank the barium, but DIDN'T throw it up. And if she wanted to throw up anything, that was the top candidate. She said she was miserable for the ride to & from the room for that process. She had to be on her back on a very thin pad, making her bedsore ache more than usual. Anyway, the early unofficial word is that there's no ileus. Later one of the x-ray guys came to her bedside with the machine, I assume to see how the barium was progressing. Instead of rolling her on her side, placing the board, and rolling her back, he slid the board under her, and that caused some grief when it hit her bedsore. They're going to try a fairly new idea in getting that bedsore healed up. They have a vacuum that attaches to a custom-fit sponge that goes into the wound. Then it sucks the wound closed. Just kidding. But my limited understanding isn't much better... I guess that it increases the circulation to the area, keeps gunk from building up, and helps things heal quicker. We're all for that.
The prayer moms came again today. One of the moms couldn't make it, but they brought a massage therapist as a ringer, so that was cool. Denise loved, and I mean LOVED getting massaged by someone that actually knew what she was doing. She also brought some essential oils for some aromatherapy, so it didn't smell like a hospital for a while. Not only did they bring church to Denise's bedside, they brought a spa as well. Beats the heck out of coffee & donuts after service, if you ask me.
I don't really have much more about Denise today. There were tests, procedures, delays, frequent stepping out... I really didn't get that much time with her during the hours I was at the hospital. I did pick up a cool little voice recorder for the iPod, though, and recorded some of our conversations so I could figure it out. Denise recorded a greeting for you all to hear, and I'll post a link to it as soon as Webmaster Mike & I get the chance. I love that I can speak with her again, as do the kids. I call so they can say "Goodnight" to her every night.
Tonight before dinner, Gracie prayed, "Dear God, I don't want mommy at the "hostable" anymore. Please bring her home. Amen" Out of the mouths of babes, huh? All the words I speak & think during prayer boil down to just that.
Side notes: Denise's dad had to drive back home today for a root canal. He's been making do for quite a few weeks with a busted up tooth. And I just found out a day or two ago that Denise's uncle had a heart attack that kept him from going on a trip to Florida (heart attack or hurricane... take your pick). He's doing much better now.

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Ready to move out of ICU

Big news today is that the doctor put in the order to get Denise out of the ICU. She would have moved out today, but there was no private room available to put her into. Hopefully she can move out tomorrow. So we're taking down the cards & pictures again, and will put them up in another room. Denise is worried that so many cards might make the other patients feel bad (she does have the most obnoxiously decorated room in the ICU).
She started a liquid food diet today. Vanilla pudding, squash soup, jello, juice... yummy stuff. Until she threw up tonight. She told me that because of throwing up, that may delay her move out of the ICU.
The MRI results were mixed. From an infectious disease department standpoint, the swelling decreased. Very good. From an opthomology department standpoint, there's no change. "No change," according to the notes that a nurse could decipher, included pupils being two different sizes and rechecking the retinas in 1-2 weeks, sooner if there's pain or a decrease in vision. This morning Denise told me that she thought the opthomologist told her that she had damage - lines in one eye - from a fever earlier on. I don't know if that's actually what she heard, of if she was confused. The aforementioned MRI notes didn't clue us in, either.
She got a new PICC line today, and an x-ray to verify correct placement. The bladder catheter was removed, then reinserted because she wasn't urinating. Immediately upon reinserting the catheter, the urine flowed. The nurse said that this is common with patients that have had a bladder catheter in for so long. But with some bladder exercises, she's expected to do just fine.
Sample vitals: Heart rate 111, blood pressure 134/65 (using a leg cuff), temps in the 99 range (spiked at only 101.2 last night). White blood cell count is normal, hemoglobin is 10 (no transfusions for several days, but is getting procrit), hematocrit 31.
We tried Denise's high-top sneakers, and indeed she said that they are a half-size too small. She felt this especially when PT tried standing her up. I trotted off to the women's shoe section of a department store and bought her a new pair of Converse Chuck Taylor All Star high-tops, black (no red or white in stock). The cashier said the total was forty-something dollars. I told her that I was only getting one pair. She said that the total she just stated WAS for one pair. What happened?!? When I was in high school, I used to buy these because they were about the cheapest things going... no pump, no gel, no hypercolor, no padding, no arch support... nothing! I should have guessed from all the hideous shoe colors the salesman showed me that Converse must be high fashion now. A friend told me that I could probably go to the men's shoe department and buy the same shoes for way less money. I'll have to try that.

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Picture, No pseudomonas, Vision damage?

Here's a picture of Denise that one of the nurses took last night. It's a scan of a Polaroid, so it's not very high quality. She's tired, but sitting up and smiling. Denise gave her permission to post this. The staff at USC has been talking about what amazing progress she's made in the last week & a half, and how different she is now than when they first got her. I thought that the Arcadia Methodist crew might be especially happy to see Denise smiling, not tethered to a ventilator, and getting ready to enjoy some refreshments.

Today she brushed her own hair, brushed her own teeth (using a regular toothbrush), and continued to enjoy lower temperature spikes (she was in the 99 range every time they took her temp today). A sample of her stats: HR 116, BP 116/69, 91% sats w/no oxygen. I found out that she does use the nasal oxygen when laying down, but doesn't need it when upright. The PT showed us some more exercises to do with Denise, and they let me stick around for the wound care. Her bed sore is continuing to heal up. Still pretty deep, but getting better. I brought her Converse sneakers that they got her at Arcadia Methodist to prevent ankle drop. Densie said they were too tight. I don't know how she'd remember that, since she hasn't worn them since being at the other hospital, which she said she doesn't remember. She was wanting to nap more than talk today, but she did tell me that she doesn't like having to look up at everyone from bed all the time. So if you visit, pull up a chair & try to get on the same eye level with her. She also doesn't like people getting in her face to talk (except me... hubba hubba). I once heard that we have a tendency when dealing will sick people to lean in too close and speak either too loud or too soft, often with a syrupy, "Mr. Rogers" voice. She said I do well at acting normal around her, which is good since she says she's already warm enough without people getting close to her face, and she's not a deaf preschooler.

I spoke with someone from the infectious disease department today. He did think that discontinuing the antibiotics (she's been off for about a week) helped lower the fever curve. I guess that we may have been chasing our tails with the antibiotics. The most recent sputum samples are not showing the presence of pseudomonas (yay!). A couple more negative test results like that, and she'll get a ticket out of the ICU and into a regular room! The ascites continue to build up, but not as fast. He thought that as the nutrition gets better, the ascites will go away. I asked about the mold in the meningeal fluid. Once again, I heard that yes, it's present, but the treatment is and has been appropriate. He also pointed out that they're treating the patient, not the lab results, and the patient is getting better fast. If she weren't, then they'd be more alarmed by the lab results.

I got a very helpful comment on what the criteria is for removing a trach:
1) Put in a fenestrated trach, no cuff. Check
2) Use the Passy Muir valve (speech valve). Used it, ditched it a couple days ago (Check).
3) Plug the trach, suction as needed. Check.
4) When no more suctioning is needed, yank the trach. That's what I'm waiting for.

Remember that you can now send email to Denise at pullingfordenise@yahoo.com. Though her vision is blurry right now, you don't need to use a larger font. I'll read everything to her. Oh, when I called tonight, she said that the opthomologist came to dilate her eyes again, and said that she had some damage caused by the valley fever. I know that this was a concern, but thought that the concern had diminished. She was tired and may have been confused. Still, it's a prayer point and I'll check into what the optho people said when I visit tomorrow.

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Send Email to Denise at USC University Hospital

Now you can send email to Denise's hospital room: pullingfordenise@yahoo.com

I just set up an email account for Denise so that you can send email to her room at USC University Hospital. I'll check that account a few times every day and print out your emails on nice paper for her. I can't believe that I didn't think of doing this much sooner. When she was at Arcadia Methodist Hospital, the hospital provided the "Email a Patient" capability from their website. USC University Hospital, while being medically advanced, doesn't have that feature.

Anywho, you can click the "Email Denise at USC Hospital" link from the Pulling for Denise blog, or you can just add the above email address to your address book.

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