Walking with IV pole, Playing catch, Fish taco

The kids & I got to visit with Denise during one of her physical therapy sessions again today. So here's a picture of the kids playing catch with her. This photo turned out better than the one I was going to post yesterday (by the way, this photo and all photos on Denise's blog can be enlarged by clicking on them). The PT let Denise know that he thought she was steady enough that she could walk around while pushing her own IV pole. He also indicated that it's not a problem for the kids & I to be there. So if the afternoon PT session is the same time each day, I'm going to try to get the kids there after school so they can have some play time with mommy.
Also good news is that there was no emesis today. We even had a friend do a taco run for us so we could all have dinner together at the SNF, and Denise ate one and a half fish tacos. Not too shabby. The feeding tube's being flushed regularly with the water, followed by Coke. Let's hope that it doesn't develop any more clogs.
As far as concerns go, the blood draw for liver enzymes was what we were sitting on the edge of our seats for today. But there were no blood draws for the liver today (I guess they woke Denise up about 5am, but then didn't have the proper paperwork and orders?), nor for the blood workup yesterday. So hopefully tomorrow those will get done through the PICC line so they won't have to stick Denise twice. The elevation of the liver enzymes is a concern. Last week those numbers were lower, going in the direction that we'd like them to go. But they were still too high. Pull for those numbers to get back to normal.
They celebrated Mardi Gras at the SNF today. One of the residents gave his shiny necklace & mask to the kids. He's been greeting Jacob with "high-fives" for the past couple of days. They've been making friends with each other. Here's a picture of Jake wearing those beads and mommy's hat. He's got his Snoop Droopy Drawers rapper persona going on.

PICC improved, Foot circulation? Homesick, Party planning

The PICC line insertion site looks better than it did yesterday. Again today, just a little food went down, but it stayed down. She' been hurl-free since last Thursday! Yay! Yay! Yay! Unfortunately, the feeding tube was left off for a couple hours this morning, so Denise lost out on some calories. Also regarding the feeding tube, we need to clarify some directives about using Coke in the flushing of the tube. We don't want all that valuable research we did on Coca-Cola during Friday night's j-tube clog to be wasted.

I forgot to mention that ankles & feet have been getting a little discolored & a little swollen during the past few days. Could be due to cold, hopefully not a circulation problem. Last blood pressure I heard was 120/80. Still, we'll bring the concern up to the cardiologist during the upcoming appointment. It's hard to imagine there NOT being good circulation, though, as she's getting plenty of exercise during PT & OT sessions. I guess that after she got a shower today, she went to PT before her feeding tube dressing was put back on. She said that felt a little weird to have that that thing flapping around while trying to walk. I saw her stepping sideways today. She'll be doing country line dancing in no time (I'd better break out my earplugs). By the way, I took a picture of Denise & her physical therapist tossing a beach ball back & forth, with Gracie & Jacob playing with some other PT equipment in the background during today's visit. But it's super late, so that picture will have to wait. It's about 11:40 pm and Jacob finally fell asleep. He has a gnarly case of gas tonight that's kept him & everyone else awake. Hopefully he's done for tonight. I'm pretty worn out (I feel better now than I did yesterday, though).

Denise asked tonight if there was a goal set for when she can go home. She misses the kids & me and is plenty sick & tired of the hospital life. Sure, she won blackout Bingo again today (she's getting good at that... maybe I should have a trophy made for her), but it's a triumph that can bring only so much joy in this situation. I told her that everyone wants her home. Based on what happened the two previous times, we don't want her turned out before she's ready to be home successfully, though. Neither the doctor nor the insurance people were able to be present at the last care planning meeting. Hopefully we'll be able to touch base and find out specifically what criteria she must meet before being considered for a discharge from the nursing home.

Jacob's turning two (and Denise is turning thirty-three) in April, and Denise is trying to plan Jacob's party from a hospital bed, as she tried to do for Gracie. Hopefully she can work out the final details from her own bed at home, right? She picked a jungle (uh... er... rainforest) theme. I thought it'd be funny to tape banana leaves to Jake's diaper, give him a spear, and take a picture of him as a pygmy. If Denise buys the idea, you bet I'll post a photo. Anyway, if anyone's got any jungle-related goodies that we could borrow for the party, please contact me (pdjwilliams@yahoo.com).

Food down, PICC line looks iffy, Communion finally

The feeding tube is still chugging along. Oral food intake was again minimal today, but what went down stayed down. It'll be interesting to see how much she weighs tomorrow. The PICC line insertion site looked a little bit red, with what looked like pus. It was hard to see under the dressing, though. We let the nurse know, she changed the dressing and cleaned the site, and hopefully there won't be anything to write about that for quite a while.
Today there was a little afternoon church service. Denise took the first communion since before getting sick. That was a milestone. Afterward the chaplain chatted with us and prayed for Denise for a while. It turns out that this chaplain serves in the horseracing world, and he knows someone that used to work at Pasadena Christian School that went to be a chaplain at a racetrack in the South. He and his wife (from PCS) lost everything they had during this past hurricane season (our school took up a collection for them, too... email us if you're interested in contributing). The chaplain said that our PCS buddy told him that he felt he was lead to that region of the country and went through losing everything in order that he'd be better able to effectively minister to others that went through the same thing. That brought to Denise's mind something that her caregiver said yesterday:
"There's no testimony without a test, and there's no message without a mess."
We all know what that's about, don't we?
I'm glad there wasn't much else earth-shaking to write about tonight. I've had bad headaches since last night (I very seldom get headaches) and I'm running a low fever. So I'm trotting off to bed. G'night!

Tube pain gone, No vomit, Helicopter

Not much medical news today, but she had plenty of visitors (yesterday, too). Here's a picture of Denise standing with one of her visitors. Ain't that great to see her standing? It makes me think back to the days when her blood pressure was almost unworkable and I would be excited to see her bed tilted up just a couple of degrees. She's come a long way... thanks for pulling for her!
The pain in the ab/feeding tube insertion site is gone. This might be due to cutting that last stitch yesterday and the suppositories for BMs (Denise is SO going to kill me when she reads this blog one day). She supplemented her feeding tube "food" with real food by mouth, and it stayed down. Yay!
Late this afternoon an L.A. County Sheriff rescue helicopter landed on the field of a school that's by our house. The kids, my friend & I all walked down to the corner to see what was going on. A few minutes later some emergency vehicles arrived. We assumed there might have been an auto accident, or a car-pedestrian accident on the walking trail along the roadway. One of the neighbors that was watching the goings-on all of a sudden said, "I hope that's not for my wife," and he hustled down to get a closer look. I thought it was cool that he thought of that, and I found myself probably a little more concerned than the other lookie-loos, being a guy that knows what it's like to be worried about his wife. The neighbor came back; I assume his wife is fine. Eventually a person walked out of the ambulance and was escorted into the helicopter. A few minutes later, another person was wheeled to the helicopter, taken in, and the helicopter took off. I haven't seen the news & don't have any idea what happened. But they wouldn't have gone to all the trouble if it weren't pretty serious & urgent. So toss up some caring & prayer-ing for that total stranger tonight.

CT scan results, Stitch removal, J-tube clog, Coke trivia

Results from the most recent CT scan: The feeding tube is where it should be, stool backed up (suppositories taking care of that now), small amount of ascites in the "right pericolic gutter." I had no idea that a gutter was part of the anatomy. I learn something new every day.
Denise complained of pain so much at the insertion site for the feeding tube that she didn't want to do physical therapy today. The interventive radiology people removed most of the stitches holding Denise's feeding tube in when they unclogged it the other day. So my aunt got permission to remove the last stitch. Hopefully that'll work.
The j-tube clogged again tonight. My aunt worked for a good hour & a half, using Coca-Cola and a syringe to eat away the clogged "food" so Denise wouldn't have to miss feedings & have to go the hospital again. During that time, I noticed that the bottle of Coke was probably a bit flat & warm, since it had been used for at least a day (they only flush the j-tube with a little bit of Coke at a time). I remembered a science class from high school in which the teacher told us about acid rain being similar to the carbonic acid, like in soft drinks. I thought that if the carbon has to do with the acidity, then the flat bottle of Coke might not be as efficacious as a fresh container of Coke. So my uncle (an engineer-sort) spent plenty of time on the phone & Internet late tonight trying to figure out if that was the case. He found some info to support that notion and other info that indicated that the phosphoric acid in Coke is what would eat away the food in the tube. He also found out that a can of regular Coke will sink in water and a can of diet Coke will float. And Coke has the highest acidity by far among the major soft drinks. I think that one of my eighth grade students should do their science project about Coke and set the record straight. At any rate, I ran to the 7-11 very late and picked up a case of cold Coke (colder soda retains more carbonation than warm), and my aunt tried using the fresh Coke in the tube. She worked it in & out for a few minutes, then gave me the syringe because her hands were hurting. I only gave it one or two pushes and pulls, plenty of plaque came out of the feeding tube, and the Coke went right in. The clog was cleared. Now I can be a doctor. Or a roto-rooter guy. So the feedings resumed and Denise doesn't have to leave the nursing home to go to the hospital tonight. Whew!

CT scan, Ab pain, Caregiver connection

Denise went for a CT scan to find out what's going on with the enlarged liver, two masses found during the ultrasound, etc. Denise also complained of pain at the insertion site of the feeding tube. We'll have to wait for the results. My aunt the nurse took Denise for the appointment and took care of her most of the day. After the car ride, Denise threw up. Hopefully it's just that pesky stop & go traffic making her sick.
Denise's caregiver today was someone she'd never had before. It turns out that she goes to the same church we do and knows some of the people at Pasadena Christian School, including the "prayer moms" that came to uplift Denise so many time. On top of it all, she's also on the church's prayer team and has prayed for Denise many times since this all began, but had no idea who Denise was. Until today. Neat, huh?

Feeding tube OK, Liver labs better, PICC better, 97 pounds

It's been a few days of waiting, but the news is encouraging...
Feeding tube fixed:
Monday Denise went to Huntington Hospital's radiology department so they could see what might be wrong with the feeding tube. Fortunately, it was just clogged again. They took care of the problem by pushing Coca-Cola into the tube until the acid ate away the clog. She used her walker to get from the parking lot to the office. As if that weren't impressive enough, she also wanted to visit Kidspace Museum and walked around there. We even were able to hold hands while Denise's caregiver carried the walker. The Taco Bell run didn't go very well. She threw up her slice of Mexican Pizza. I know, I know. Taco Bell isn't Mexican. And if it were, they'd have no business selling pizzas. Then she went back to the nursing home and did well overnight. We also found a cheaper version of ScandiShake (sprinkle-on calories) that tastes good and is helping Denise get some weight back.

Liver Enzymes heading back down to normal:
We found out today that Denise's liver numbers changed for the better, enzymes lowering considerably. She's still not as normal as she has been, but we're glad that the numbers are heading toward normal. Another liver lab blood draw will happen in a week.

CT Scan on deck:
There is a CT scan early tomorrow morning that will hopefully shed some light on what's going on. While we're optimistic that it won't reveal anything we didn't already know about, we'd still appreciate some pull from everyone on this one. We don't want anything new to show up, especially not anything majorly nasty.

Other neat things:
The PICC line insertion site is no longer red. We were worried about infection. Now it looks like there's not much to worry about there. Whew!
Denise had plenty of visitors over the long President's Day weekend, her parents among them.
Episodes of emesis have been declining again, and today Denise weighed in at 97 pounds.
Denise has been having a caregiver for twelve hours during the day, then doing nights alone, and it's been going fairly well. In fact, she said that it's been easier to get someone to help her at night than what it was during the day before the caregivers started coming. I guess that during the night, almost everyone's drugged up and asleep, so the staff, even though fewer of them, seem to respond faster to the call buttons. Go figure.
She won BINGO three times today. She keeps doing this. That's starting to scare me.

7 Months, Masses found, Retina damage, J-G tube not working

Today (Saturday) marks seven months that Denise has been in the hospital.
Lots of things happened since the last post. Here's the rundown:

Thursday:
Ultrasound showed enlarged liver, enlarged spleen, two masses. CT scan will be performed in a couple days to find out what's going on. We're not worrying about these until we know there's something to worry about. Enzymes continue to be high, and this may possibly be a manifestation of the cocci again, or toxicity to the meds that fight the cocci. It's a "darned if you do, darned if you don't" situation. The silver lining is that *if* this is more Valley Fever infection, the dosage of the anti-fungal meds can still be increased. And I think that if the liver function is whacked out as a side effect of the anti-fungal meds, perhaps the meds can be decreased. Another liver test will be preformed next week. If the enzymes are still high, a liver biopsy may be on the horizon.
Opthalmology appointment showed that the right eye does have 20/20 vision, normal field of view. Left retina does have damage. Denise described vision through the left eye as being black with a spotlight that allows her to see. She had to scan lines on the eye chart in order to read. We rescheduled an appointment with a retina specialist.
Denise had a bit of pain at the site of her feeding tube today and yesterday. That's a new complaint. She also had a little bit of red around the insertion site of the PICC line. She was itching it, too. I wondered if a little bug crawled under there and bit her or something. But it's probably a bit of infection. Hopefully it's just at the surface, not far in along the PICC line. Also, we found that the covering for the PICC line hadn't been fully removed the last time it was changed, so it was not letting the PICC insertion site breather and was causing some irritation for her.
At night Denise & I got a neat surprise that was planned by some folks from my school. We were serenaded by a singing family. Valentine's day stretched out over a few more days for us!

Friday:
Back to the ophthalmologist. They took pictures of the insides of Denise's eyes. They show that there is permanent damage to Denise's right retina (but with new glasses, the vision is corrected nicely). The left retina shows inflammation (possibly infection... let's hope not the cocci). The ophtho people that visited Denise at USC didn't have the ability to take pictures while in Denise's ICU room, so there's nothing to compare today's pictures with. Could be damage that's getting better (Denise has indicated that she thinks her vision is better since USC), or it could be getting worse, or staying the same. So we'll have to take Denise back again in a couple weeks for another set of pictures. The waiting game has begun.
We had a care planning meeting with several people that are helping Denise. Reps from the medical group & the SNF doctor weren't able to attend, but we still were able to cover plenty of ground. We still don't know how long Denise will be in the SNF. She is progressing well in each of her therapy areas, though.

Today (Saturday):
We interviewed some people for care when Denise comes home. We'd appreciate your prayers for wisdom on this one, as everyone we talked to was qualified and seemed wonderful. We're looking for a good fit for our needs, but we don't entirely know what they'll be yet, nor when home care will start. I know that it's a bridge we'll have to wait to cross. We're just paving the road to that bridge, I guess.
The feeding tube stopped working today. No food is able to go in. It's possible that there's a clog. It's possible that the tube migrated, as it did at Huntington Hospital. It's not an emergency, so they're increasing Denise's IV fluids and even encouraging her to try eating more soft food by mouth (she even ate some pastrami sandwich). She's done well so far with keeping food down. Let's hope that continues. We have to get in to see a radiologist and have this fixed. We were told it couldn't get scheduled for today and chances were slim that we'd be able to be squeezed in tomorrow. Notice that it's a three-day weekend, so my guess is that Monday's out, too.
And through it all, Denise is still in good spirits.

Sit & stand, Gall bladder ultrasound tomorrow

Here's a neat picture of Gracie & a couple of her new friends from the skilled nursing facility. The dog is a toy... batteries make it appear to breathe. The nice lady is real. She always lights up like a Christmas tree and smiles when the kids come with me. Gracie & Jacob seem to like the extra attention they get whenever they walk into the place. They're kind of like pint-sized celebrities.
Overall, a very good day for Denise. Someone, a total stranger until today, had visited her and gave her a big basket full of Avon goodies with which to pamper herself. (Thank you, but you're making me look bad). :O)
She just called me earlier this evening to say that she scored 100% on her physical therapy task test. Her big accomplishment today was sitting down into and standing up from a chair *without* using her hands. She did a set of ten. Her walking is getting less wobbly, too. Hopefully they'll let her walk around without a walker or cane soon... just pushing her own IV pole. Speaking of medical equipment, we did find the wheelchair and cushion with another one of the newer residents. Whew! She's in good spirits about all the progress. Topping things off, there's been no vomiting today that I'm aware of.
At 10:30am tomorrow morning she's going for a scan to see what part the gall bladder may or may not be playing in her emerging liver problem. Her liver enzymes are high. They're not nearly as high as she's had in the past, but we don't want to get anywhere near that high. Sorry, but once again I'm without specific numbers for any of you out there that are hep to hepatology. She has to go to another facility to have the scan done. My understanding is that it'll be done at Arcadia Radiology, which is affiliated with Arcadia Methodist Hospital (where she began her struggle), if not at the hospital itself. At any rate, please pray that this liver problem is something mild and/or easily remedied.

Valentine's date, 92.2 pounds, Liver enzymes elevated

Tonight's picture is from this evening's Valentine's Day date. I've never been on a date to a nursing home before. Hopefully this is just practice for doing it again with her decades from now, right? We got all dressed up, I brought a card & flowers, and I gave Denise a CD of Billie Holiday singing love songs. We danced to You Go To My Head (Denise's favorite from the CD), among others. She had that feeding tube attached, so we couldn't do any fancy moves. That's my excuse. I can't do any fancy moves, anyway. That's Denise's department, as she's the dancer. The wonderful thing about swing dancing is that the guy's part isn't that tough. The gal's part is much flashier, and makes the couple look like they know what they're doing. But enough of that. Here's what went on since the last post...
Denise's folks came for a visit on Sunday & Monday. They hadn't seen her in two or three weeks. Denise, her folks, and my mom all went to several of the craft sessions at the home and made Valentine's goodies.
Today's weight was 92.2. I was hoping that the weight would increase faster. In a perfect world, Paypal would have a way to send Denise pounds & ounces over the Internet.
She's still been throwing up once in a while over the last couple of days. It's usually not very much, and she thinks it's been caused by thick phlegm from her cold lately. Yesterday she had to try to eat a zinc pill that had been crushed and mixed into applesauce. There's apparently no option for IV zinc that's not in TPN, nor should it go down the j-tube, as the granules would clog it. Fortunately, the speech therapist thought that if ice cream does well, applesauce would be a reasonable next step.
The liver results came back showing that the liver enzymes are elevated. I have to get the specific numbers, and we're going to see if we can get the doctor that's associated with the SNF in touch with the USC hepatologist. At USC, they gave Denise bear bile (urso) because of sludge building up, and that might do the trick for her again here. Remember that a couple days ago the GI doctor noted that the liver was enlarged. The ID doctor commented that it would be hard for him to imagine that the liver was harboring the cocci while she's getting better everywhere else. So as has been the case with Denise all along, she's just filled with little surprises. She's kind of like a piñata that way.
It's been an eventful couple of days around the SNF, too. Sometime yesterday or today Denise's wheelchair and seat cushion went missing. They are rental items. There are so many wheelchairs there, it would be easy to see how someone would grab any available chair in a pinch. I put stickers with our name & number on Denise's chair, so hopefully we'll find it. On a more somber note, yesterday there were emergency vehicles there when I arrived in the morning. As I left, I saw cars arriving and the people getting out were crying, so I assume the emergency vehicles were for their loved one and I also assumed the worst had happened. It reminded me of the ICU waiting room at Arcadia Methodist. Then tonight just as I arrived for our date, a "code blue" was called over the intercom. I actually got light-headed and felt tingly for a moment, as it reminded me of when that code was called for Denise in ICU in the early days of her hospital stay. The staff at the SNF snapped into action and things got better for that resident.

No news is good news, Relaxing Sunday

Just a quick post to say that no news is good news so far. The only mild downer is that in spite of me wearing a mask when I visit, Denise has caught the cold that's been making the rounds at our house. Aside from that, Denise had a relaxing day with no PT or OT, but went to some of the activities to make up for that. Denise was disappointed because devotion time this morning didn't happen, but enjoyed making Valentine's crafts, getting her fingernails painted, and doing the "workout in a chair" with some of the other residents. Now when I visit with her and we go around the facility, she's greeting more and more people by name. I'm glad that she's finding so many people with whom she can interact.
Since I haven't had to clean Jacob's mouth out with soap yet today, we'll go to Chuck E. Cheese tonight before going to visit mommy!

New glasses, Retina damage, ID appt, Many thanks, Haircut & first sentence

Friday Denise got to leave the SNF to go for two appointments. She missed out on a few hours of feeding (and much-needed calories), but we did get to Costco for an eye exam and then Lens Crafters for some glasses. Yes, Lens Crafters is not the frugal way to go, but Denise hasn't been able to see for almost seven months, and we thought that a little instant gratification was in order. The glasses definitely help, but not as much as we'd hoped. The eye doctor said that the right eye seems to be OK, needing only a slightly different prescription. The left eye, however, does have some retinal damage. With her right eye covered, Denise described looking through only her left eye as having a spotlight on one part of the eye exam chart. She had to turn her head & look slightly sideways in order that more of the eye chart could be revealed. This may or may not get better. We are encouraged by her feeling that her vision has improved compared to what it was during her USC stay.
The other appointment was earlier in the day with the infectious disease doctor. Though certain lab results that he's concerned with haven't changed much, he was very encouraged to see how much better Denise looks and acts, as well as the fact that she's not experiencing some of the common side-effects associated with the fairly high dose of antifungal meds she's on (800mg/day of diflucan... 1000mg is about the max they might try if needed). Apparently many people experience dry mouth and lips, and hair loss. She said her mouth feels fine, and her hair is definitely coming back in. I told him what one of the ID doctors at USC told me about not finding anyone any other pregnant woman that's survived what Denise has been through, and asked if he knew if this was indeed true. His opinion was that it was reasonable to assume that others have survived, but it just hasn't made it into journals. I guess it follows the general flow of news, in which things going well and/or getting better don't get the attention that a crisis or negative events get. Newsworthy or not, I'm glad that Denise is still with us!
Today was a restful day for her. She was still tired after all the activity yesterday. In fact, today was utterly uneventful for her. Peace & Quiet. Rest. Feeding. No emesis. That's the way we like it.

I'm one thankful guy today. Since pointing out the link to the Williams Family Fund the other night, several people have blessed us with contributions. In the mail today, we received a Valentine's Day card with a money order for $100 from a very generous person that simply signed it "A Friend." I've been privately writing thank you notes (slowly but surely) to the people that have helped us during Denise's hospital stay. To "A Friend," here's a public "thank you" for you. I can't believe I forgot to mention two biggies last week. I posted a request to borrow a chest freezer for a while for storing pre-fab meals. The request was answered by a family from my school, who provided a freezer for us. I thought they had a used one in their garage that they'd bring by. Last Saturday a delivery truck came by with a brand new upright freezer! It's now filled with a bunch of frozen ready-to-go meals that are making my life much easier. Also last weekend, the kids got a new play house. The story behind it is really cool. At Christmas time, some parents from my school told me that each year their kids get a gift from the grandparents, and the grandparents also give the grandkids money that is to be given to whatever charities they like (I told Denise about it and we agreed that we're going to start doing that with Gracie & Jacob). The school kids wanted to donate their money toward a playhouse for Gracie & Jacob for Christmas. It arrived last weekend, giving Gracie & Jacob a big long-lasting Christmas surprise! Thanks, kids (you know who you are)! We also kept the boxes from the playhouse & freezer so the kids could play in them, too. Big thanks: Tonight when I was visiting Denise our conversation turned to how bad things were for her, as it does from time to time. I have a picture stuck on the wall from when we lost the baby, and Denise has all the tubes & needles in her. It's a tough picture to look at, but I've tacked it up everywhere she's been so that the staff at each hospital can see where she came from. Seeing it on the wall behind Denise, who was tonight sitting up, smiling, joking around with me, being animated and able to interact with me, made me about as thankful as a guy can get. The difference between where she was almost seven months ago and where she is now is astounding. As if the financial help, freezers, playhouses, housework, childcare, food, and everything else weren't already enough, thank you all for your prayers & caring. Thank you, thank you, thank you.

Finally, some light stuff: I've been busy trying to play catch-up with all the paperwork that's been piling up & trying to start taxes. And I gave Jacob a haircut yesterday. He was a good-looking kid... too good-looking. Frequently when I've been out with him, people have asked if he's a boy or a girl, or even asked how old *she* is. Yesterday I had about enough of that, so I made sure to give him a haircut that only a father would inflict upon his son. I started with a Mohawk, but couldn't find the camera. Then I buzzed the rest off. The vibrating of the clippers tickled him, and he was laughing most of the time. Gracie loves Jacob's peach-fuzzy hair. Denise asked, "What did you do to his hair?" She didn't much care for what I'd done. I told her that I'd done it twice before, though maybe not quite so close, and she never said anything about it. It was brought to my attention that this is because she was in a coma. Point taken. The kids are with friends for the weekend, and they said that the only thing his new haircut does is make his long eyelashes stand out even more. So I guess my plan backfired. And I was notified tonight that Jacob reached a milestone today, stringing three words together:
"Darnit, Bob! Please?"
But he didn't say "Darnit." And he keeps repeating the phrase. At least he's polite about it, though, huh? I thought to myself, "Have I been frustrated with Bob, my right-hand man that's been staying with us, and uttering things that I ought not?" Honest, none of us know where he picked this up from. I'm blaming the friends that have him for the weekend. They're probably blaming the haircut. Either way, we can't wait for the kids to come back home tomorrow so that we can hear Jacob for ourselves. I'm told that when I was about Jake's age, one of my dad's friends picked me up in his arms and I called him a "baffard." At least Jacob can swear better than I could at his age.

GI appt., ID tomorrow, PICC OK, Family Fund

Denise got out of the skilled nursing facility to see the GI doctor today. He was encouraged by how much progress she's made since the feeding tube was put in. He also thinks that based on the info we have, it does appear that SMAS was the problem, and putting on more weight via tube feedings will eventually correct the problem of throwing food back up. She did have two vomiting episodes today. That's been unusual, as the last few days she's had either one emesis or none at all. She weighed in at 91 pounds with clothes on a couple days ago, then 93.5 with clothes & shoes today. He noted an enlarged liver (been that way ever since USC, at least), and wondered if the cocci might still be present there.
We've got an appointment with the infectious disease doctor tomorrow. That's very important, and she'll probably be followed by I.D. doctors and be on antifungal meds for life. While at USC, one of the doctors said that Denise was the only woman that he could find record of that survived going through the third trimester of pregnancy with a disseminated cocci infection that went to the brain. So her case might get written up in medical journals and the info used to hopefully increase the chances of survival for any other unfortunate pregnant women that go through what Denise went through.
Also tomorrow, we're running Denise over to the Costco for an eye exam and some glasses. We hope she has the energy after her ID appointment. Our hope is that a new prescription for glasses will help her vision somewhat.
The PICC line problem that crept up the other day has been resolved. It might not have been clogged, but might have been blocked by migrating up against a blood vessel. I guess that they can be twisted, pulled, and I don't know what all else, resulting in temporary blockage. More twisting and pulling probably fixes the problem, too. Anyway, we want that PICC line to remain in service because Denise is still having some electrolyte problems from time to time (calcium too high, mag too low).

I've refrained from mentioning the following information in the blog, and am hesitant even now. A couple months ago my school set up the Williams Family Fund for Denise to help with the extra expenses that have come up since the hospital stay started. Those expenses are mounting. If you are so lead, there's a link on the right-hand side of this web page that will give you more information about the fund. And that's the end of my shameless plug. :O)

Dancing, BINGO, Saxophone player

Nothing notable to report from a medical standpoint today. That's the way we like it. In addition to walking the same distance today that she walked yesterday, she tried dancing. Yup. During a conversation with the PT, she talked about how she & I used to go swing dancing, how much she loves to dance, and some flamenco lessons she took just a couple months before getting ill. Do demonstrate, she did a slow turn but got wrapped up in her feeding tube. She had a good time with it anyway.
Denise has been going to more of the daytime activities. Today she played BINGO and won the blackout round. I'm excited that she was able to see the numbers on her card. Speaking of, she's got an eye exam next week. Wouldn't it be great if her vision could be corrected simply with a new pair of glasses? That would beat brain damage as the cause of vision impairment.
Tonight while visiting, I heard some great saxophone jazz playing from down the hall. I thought it was a recording until the music tripped up a bit. Curious, I went looking for the source of the music. One of the residents in Denise's hallway was playing some great jazz. He had a stroke about two years ago and still can't use his right hand very well. In spite of that, he could copy Coltrane, Getz, Bird, and improvise his own material as well. I hope that he'll be able to play during dinner at the nursing home sometimes so as to give the lady that plays the accordion during dinner a break now and then.

Longest unassisted walk yet! Neat-o Jacob story

It was slow going, but Denise walked all the way from the rehab room to the entrance of the SNF this afternoon, without using a cane or anything! The PT only needed to push her IV pole. I *wish* I'd have been there for that so I could snap a picture to post for you, but Gracie & I had just left.
After dinner tonight I brought Jacob for some alone time with mommy. He was the most comfortable with her that I've seen yet. He sat right next to her, played, smiled, laughed... mostly he used the remote control to make the bed fold up into a taco shape. Jake brought smiles to the faces of several of the residents in the lobby as we were coming and going, too. One lady in particular was interested in him, so I rolled the stroller over to her. He reached out to her with a toy car in his hand. She took his hand and shook it, Jacob laughed, and the lady started tearing up. She thanked me for letting her "touch a baby again."
The simple things, huh?

Walked w/IV pole, Stay put at SNF, Disabled

Denise has had a relatively good past few days in the nursing home. She walked while pushing her own IV pole with the feeding tube bag & pump on it. She had one 300cc emesis right after the Super Bowl on Sunday (in my opinion, the FedEx commercial was the winner) and felt nauseated last night (Monday), but otherwise, throwing up is becoming less frequent. The feeding tube continues to chug away. However I just found out that the PICC line in the arm has clogged. The danger is that if there's a clog and any other meds are put through, they could dislodge the clot and that would be bad news. I don't know much about PICC lines, but I guess that some styles can simply be flushed with saline solution, while other styles require the addition of heparin (an anticoagulant). The poor nurses are already overworked & running around like crazy, and have really stepped up to the plate in flushing Denise's feeding tube even more frequently than what the GI surgeon recommended. Now it looks like frequent flushing of the PICC line needs to be added to the work load.
We will have a plan of care conference hopefully Thursday. At that time we will meet with PT, OT, doctors, nurses, case workers, and others to discuss Denise's care. It does look like this SNF (skilled nursing facility) will be Denise's home for a while. You might remember that we were thinking of trying to move her elsewhere a while ago. We kicked around ideas quite a lot on Saturday. It turns out that she doesn't fit the criteria for moving to an acute rehab setting. The staff to patient ratio at other non-acute rehab places would be about the same as where Denise is now, so we'd still have someone be with her to complement the staff's work. If we went somewhere else, we'd have to start all over with the paperwork, peoplework, and learning curve for care. That's already been done here, and the people working with us and Denise have been very responsive to our squeaky wheels. A very nice benefit of staying put is that this SNF is very close to home. Going anywhere else would likely make it harder to work at maintaining any family cohesion. Denise's opinion was to just stay put for a while.
A new to-do list item for me is to look into getting Denise declared disabled. Being a stay-at-home mom has been of incalculable benefit to the family. But not being in the work force means that she hasn't stocked up enough credits to qualify for SSI, SSDI, or any other money. But being declared disabled will likely result in her being able to get some of the services that she needs.
On an unrelated note, Gracie told me the name of a boy that she thinks she wants to marry from her preschool class. And so it begins...

Walked holding rail, No emesis so far

Here's a photo of Denise using a cane to walk yesterday. You can see that she doesn't have much hair. Rather than having a few long wisps of hair, she decided to trim it all about the same. The bald spot on the top & back of her head was peach fuzz a couple weeks ago. Now it's more like a coconut. Denise thinks she looks like a baby bird with fuzzy head feathers. The workout today included walking without a cane, but just holding onto the rail along the hallway. They had Denise trying to do squats & walking backward. She was shuffling backward yesterday... sort of a moonwalk.
As far as numbers I don't understand go, her hemoglobin went from 9.2 a few days back to 11.1 today. Very good to see that trend. Her magnesium was 2.1 Wednesday and is 1.7 today. That's low normal, but they're starting to boost that anyway. Her potassium, which was a big problem when she was home most recently, is not a problem currently. Yay!
The j-tube feeding is still doing well today. The nurses have been flushing the tube more frequently than requested, and that's paying off by keeping the tube from clogging so far. The little ice cream cups that Denise gets for dinner are staying down, too. She only had one time today where she felt like she'd throw up. My aunt aspirated some of the stomach acid out through the g-tube, rolled Denise on her left side, and the feeling subsided. For some reason, laying on the left side makes her GI tract happier. Up until this point, she's preferred to lay on her right side. Go figure.
On a sad note, we lost one of our pets today. We're lamenting the loss of Gracie's beloved balloon animal. The administrator of the SNF, upon seeing Gracie & Jacob the first time last week, promptly made up a balloon poodle for them. Gracie thought it was pretty neat that with a few untwists & retwists, I could convert the poodle into a giraffe. Jacob preferred the sword. But the poor old balloon made the ultimate sacrifice today, popping while I tried to retwist the sword back into a giraffe. So now our dog Chloe is back on center stage with the kids. Yes, we already have a dog. No cat needed. By the way, somebody posted that if I try throwing the cat upside down, it'll land on all four legs. Now, you know that if you drop buttered bread, it always lands with the buttered side down. Somewhere I heard someone ask what would happen, then, if you taped a piece of buttered bread, buttered side up, to the back of a cat. Maybe I'll try that with Clovis the SNF cat tomorrow during the halftime show. Denise invited me to the nursing home to watch the Super Bowl on their big-screen TV. I'm rooting for the commercials this year.

94 pounds, Long cane walk, Disneyland respite

Denise weighed in at 94 pounds today, and only threw up once. I told her that I'm glad to hear that she's putting on weight and looking fuller. Men, do not attempt this at home. Part of me thinks that the scale was off to put on that much weight during the week. Part of me just wants to take another bit of good news as just that. The tube feeding and the ice cream at dinner seem to be doing well. If Denise's problem is MSA syndrome, then the increased weight gain should produce decreased emesis, better electrolyte status, and in general help correct a whole lot of what's wrong.
She walked all the way from the PT room to her room using only a cane. The therapist also started having Denise wear leg weights while walking (one pound yesterday, two pounds today). She's complaining of shin pains. Apparently cane walking uses some different muscles than walker walking, so the shin pain is normal.
We found out that the family of Denise's roommate goes to the same church we go to. Small world, but big church. Easy to miss people sometimes. We also moved Denise's bed against a wall instead of having it stick out into the room. That really helped open things up. They're letting Denise's bed rail stay down during the day so that she can start to get out of the bed & use the commode on her own soon. That right there will help Denise feel more in control of things. She also finished listening to the Lion, Witch & the Wardrobe today. We were given the whole series of Narnia audiobooks for Christmas, so she's going to start the next book in the series. A while back we tried watching the Lord of the Rings movies but gave up. Denise's vision is so poor that she really can't see a movie, even with a portable DVD player on her lap. So audiobooks have come to the rescue.
The following is kind of long. But I told Denise about it all and she wanted to make sure I jotted this down.
I "took a day off" today. Yesterday was the end our semester, so there were no students today. For Christmas gifts, Gracie & I were treated to annual passes to Disneyland. So we went for a couple hours this afternoon. It's been neat to go for just a couple hours here & there. Going with a young child makes the "dumb little kid rides" an incredible joy to go on now. Today we mostly limited our visit to Adventure/Frontier Land. There was a side trip to the teacup ride, where Gracie always wants to get the purple cup. It's Gracie's favorite cup for color, and one of my favorites for gear ration & higher RPMs. Anyhow... The first thing Gracie wanted to do was the Enchanted Tiki Room. She loved it until the walls started singing, and she got scared and wanted to leave when the thunder & lightning started. The jungle cruise skipper had me laughing so hard that I almost peed myself a couple times. I think his routine was the funniest I've ever heard on that ride (they get to make up some of their own material). On the raft to Tom Sawyer's Island, a mom asked me where we got Gracie's princess hat. It's one that Gracie got the first time she went to Disneyland, when a school family took us for her birthday. She's worn it every time since. Anyway, I guess that they don't have that style of hat anymore. The mom's little girl expressed some sadness about not being able to get a hat like Gracie's. Gracie told me to tell the other little girl that she could use her hat, if she promises to give it back before we go home. The mom thought that was pretty nice, but told Gracie that it's a big place and they might not be able to find us. It probably would've worked just fine, though, since Gracie and the little girl played together for a good hour or so inside the caves on Tom Sawyer's Island. The shooting gallery had her hooked for a long time. OK, me too. She met Jessie from the Toy Story movie. I forgot our camera, but asked another dad there to take a digital picture for us and email it. Hopefully that will happen, because that shot was a good one. Of all the other characters she met, I think the gal that played Ariel from Little Mermaid did the best job. You could just see that every little kid that met her felt like *they* were Ariel's favorite kid. I didn't see this happen to any of the other kids, but when Gracie was with Ariel, she pulled out a fork and asked Gracie if she'd ever had her hair combed with a "dinglehopper" before. Silent but smiling big, Gracie shook her head. Then the Little Mermaid started combing Gracie's hair with the fork. Family meals might never be the same.

100 feet of cane walking... twice! Ice cream diet?

The big accomplishment today is that Denise walked over 100 feet with a regular cane, and did it twice. The only emesis she was was at noon. That's the first time since 4:30am yesterday. She also ate about four ounces of ice cream for "dinner" tonight and it's staying down. The ice cream diet... this could be the beginning of something. That ought to pack on calories. By the way, I mentioned in a previous post that she's holding weight, but not gaining. As I think about it, she's increasing her physical activity each day and burning more calories. Maybe that's not so bad. Thank you to all the people that have offered to donate your unwanted pounds to Denise over the last several weeks. If only there were a way, huh?
She had a fairly long window of time where she was sitting up or ambulating (that's my new medical jargon word)... about an hour and fifteen minutes. Most of that time was spent in the "family room." The family room has a large screen TV. While watching Who Wants to Be a Millionaire, she was able to read the questions on the screen! Much of that time was spent with the nursing facility's cat, Clovis, on her lap. I think it's kind of ironic that Denise survived Valley Fever, and now the facility she's at has a cat that's got the same name as a city in the central valley of California (I'm told that west Clovis is the nice part of Fresno). Gracie and Jacob love that cat. I think cats are great as long as they're at someone else's house. I've got to admit, this cat seems pretty nice. Then again, I haven't bowled the cat down one of the smooth-floored hallways yet. Maybe I'll get a chance when nobody's looking...

Slow day, more cane walking

Today was a fairly slow day. The big highlight for Denise was that she got to walk with a cane some more. I also saw her walk about two feet from a chair to her bed. She just kind of pivoted on stiff legs, but it worked. Another big highlight for her was a visit from a couple of the teachers where I work. They brought her a new outfit to wear to PT. Thanks!
The nurse tonight said that she noticed some resistance when working with the j-tube. She said that she's going to flush it even more frequently. Apparently even though the meds are in elixir form, they still can build up along the walls of the very tiny tube, restricting flow. That I'm aware of, she only drank water today... no oral food intake to add to her feeding tube nutrition. She only vomited once around 4am and was OK the rest of the day.
Denise's bed sore was irritated more than usual today, so no dressing was applied. Just lotion. She's had loose stool today... maybe too much fiber? Anyway, that might have been irritating her.
We have been hiring round-the-clock help for her to supplement the staff at the SNF. The thought came up of cutting back on the hours of extra help. Denise said she was not comfortable with being left alone, particularly at night when staffing is the thinnest (most residents sleep, demanding less crew). We're kicking around some ideas of what to do next.
I was shuffling through some papers and found a note that I jotted down from a book Denise & I read (OK, I did the reading, she was sedated) a few months ago:
"Without the stress of the storm we cannot realize the worth of an anchor."
Yup.