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.

Read More

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).

Read More

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!

Read More

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.

Read More

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!

Read More

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?

Read More

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.

Read More