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...

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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...

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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...

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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...

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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 &...

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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...

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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...

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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...

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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...

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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...

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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...

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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...

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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,...

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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...

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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...

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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...

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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...

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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....

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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...

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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...

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