Full day at home, Retinal inflammation gone

Denise has been home for one day now and things are still going well. We're all enjoying having mommy home. More good news came from the appointment with the retinologist. The inflammation that was there a month or two ago is gone now. The inflammation either signified old damage that's healing or new damage that's getting worse. Since only scars remain and the inflammation is gone, that is a positive sign. Denise's eyesight still has a big black hole in the field of vision in the left eye, but the right eye is good. The retinologist also said that the retina is in a sense a window into what's going on in the brain (oversimplified, but we're glad to hear it). The next big appointment that we're concerned about is the ID appointment next Tuesday.Jacob is learning how to talk by leaps &...

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Breast Cancer and Pregnancy

Although it is rare for breast cancer to strike younger women, the fact remains that all women are at risk. And for those of childbearing age, the first sign and symptoms of breast cancer leading to a diagnosis can not only be upsetting and unexpected, but complicated as well.Developing breast cancer at a younger age—in a woman’s 40s, 30s, even 20s—will mean making important and difficult decisions about one’s life and future perhaps much sooner than originally expected.One concern is developing breast cancer during pregnancy, which although rare, can still occur. In this case, the treatment chosen will not only affect the patient and her body, but the growing baby inside her as well. It will depend on what stage of pregnancy she is in (first, second or third trimester) and what stage her...

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Breast Cancer is Cureable!

Every few minutes a woman is diagnosed with breast cancer. The disease is the most common cause of death in women between the ages of 40 and 55, and there are more than 200,000 new cases of breast cancer expected in the U.S. alone this year (see www.nationalbreastcancer.org).With staggering statistics such as this, no wonder that at the first sign of breast cancer—the typical symptom is usually a lump or other noticeable abnormality in the breast—many women automatically panic, assuming the worst.But only about 8 of 10 lumps turn out to be cancerous. And even for the women who do end up diagnosed with the disease, there are still many options to consider for treatment.If the breast cancer tumor is sensitive to hormones such as estrogen and/or progestin, hormone therapy is used. The drugs come...

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Denise is finally home!

Here's a photo of Denise with some of the crew at the SNF. These are just some of the people that played a part in her getting better during this last phase of her hospital stay. After taking pictures & saying goodbye to other residents/friends, Denise was discharged from the skilled nursing facility about 6pm this evening. So far, so good. Denise's choice for her first meal at home: our favorite pizza (from Petrillo's in San Gabriel).Well, part of me wants to put "The End" with this post, but past experience tells me that it might be wise to keep this blog going for just a little while longer. And at some point, Denise & I need to write...

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Denise finally comes home today!

Denise finally ends her eight & a half month hospital stay today!We're on pins & needles, hoping everything goes well this time.Pray, please.I have to take another (unpaid sick) day off work today to get Jacob to the doctor. Probably just as well that I'm not at work, with Denise's discharge & all. Everything seems to be happening at on...

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Tomorrow's the big day

One day left until discharge. Tonight we were talking about how guarded both of us are about getting too excited, based on what's happened the last two times she was discharged. The details for this discharge seem to be falling into place better than before, so that's giving us some more confidence. Denise's caregiver was trained in feeding tube dressing care. My nurse aunt is coming tomorrow to take care of PICC line business, take Denise to an appointment in the morning, and be on hand for the discharge this time. Denise has still been having nightmares, but is otherwise mentally normal, getting physically stronger, and keeping her food down. The doctor looked at the rash we were mildly concerned about and thought it was just acne. On the one hand, that makes sense... synthetic blankets,...

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Two days until discharge, Dresser needed

Two more days, and Denise should be discharged. I really, really, really hope that it goes well this time, so PRAY, well-wish, cross your fingers, toes & eyes...Things were quiet on the medical front and Denise got to come home for her nightly three hour pass again. I noticed some ab swelling returning... hopefully that's nothing that requires a hospital stay. Or AN hospital stay, if you prefer to ignore the beginning "H" sound in hospital. Tomorrow Denise's caregiver will hopefully receive training in how to change the dressings for the PICC line & feeding tube. Though neither has been used for days, the chatter is that both will stay in, just in case. Speaking of Denise's caregiver, she's been Gracie's & Jacob's caregiver for the past couple days, as there's something going around...

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Three...

Three days until discharge. Absolutely nothing medically significant happened today, but Jacob was able to hang a spoon from his nose during dinner tonight. He learned that habit from me. I've got quite the honker, but Jake's nose is dinky. So it's extra-impressive that he was able to do this trick.Denise's primary care physician paid her a visit. We really appreciate how he's going above & beyond what's expected & what's normal to familiarize himself with her case before she leaves the SNF.I learned late this afternoon that my great uncle is not expected to live more than a day or two. Relatives are flying into town. Please lift up my...

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Countdown to discharge, some good news

Four days until discharge. Denise overall has been doing well physically. The only downers are that she's been having nightmares fairly consistently the past few nights, feels a pain in her chest (possibly a strain from her little fall the other day), and had a rash on her chest. The rash is not the same as what she had as a symptom of valley fever back in July. I got a reassuring email from a grandparent of a couple of my computer students that had valley fever, saying that she too got a rash, but it faded and life continues to go on.We got some positive news on Friday from the ID doctor. He has some new info on titers (tests to measure the concentration of the cocci in her system) that seem good. Denise's titer on the CSF (cerebral spinal fluid) is 1:2 (the same and not higher then the...

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Headache, Dizzy, Rash, Nightmares, Dad's cancer news

Denise is having some emerging symptoms today. Mild headache (if severe, ID doctor says to go to emergency), some dizziness, and she was more tired today than she has been the past few days. She also has a mild rash on her. It doesn't look the same as the rash that appeared just before she went into the hospital (whew!), and it could just be a side-effect of one of the new meds that the neurologist put her on. She also had two bad dreams last night and one the night before. She was wondering if that was a side-effect of one of the meds as well. I'm probably a little over-sensitive to all of these things right now, but the appropriate doctors have been notified, just to cover all the bases. It's still looking like next Thursday will be her "graduation" day, barring any major crisis. I want...

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Discharge date set, Liver labs, Bedtime pic

I had to post this neat pic of Denise reading to the kids at bedtime tonight during her pass home from the SNF. It's a perspective shot. Her legs are actually about half the width that they appear here. Lucky for you I'm exhausted; that makes tonight's post quite short. We've requested that the discharge date be set for next Thursday March 30, and the SNF doctor seems to be receptive to the idea. We also presented a "list of demands" to the SNF (with a smile, of course) that we'd like to have in place before Denise is sent home. Third time's the charm, huh? We'll see. The liver labs came back today. It's a mixed bag. All the changes are slight,...

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Still at SNF, Heps negative, First fall, Evening at home

Update to today's earlier post:Denise cheered up as the day went on, plugging away at getting better. She seemed the most "herself" that she's been in a few days. And she's still at the SNF (skilled nursing facility), however chatter is increasing about getting her discharged. One of the options we thought of was to request her official discharge for next Thursday. At that time my nurse aunt will be back for another visit and we'd have Thursday and Friday as regular business days in case anything goes wrong. However that would use up more of her precious days in the SNF (100 per calendar year are covered, and she's used about half... it would be prudent to conserve them just in case). So there's a balancing act. They were supposed to do a blood draw today to see about the liver and electrolytes....

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Tweak neuro meds,

Yesterday the neurologist was happy to see Denise better than she was at the hospital last week, and much better than she was at the very beginning of January. He tweaked the meds and their dosages some more to fine-tune everything to meet Denise's needs. He gave us a list of side-effects and warning signs to look for in her behavior and wants to keep following her. Still no answer as to whether what she's gone through recently was caused by the infection on the move or something else. Nor could he tell us whether the lesions that showed up on the most recent MRI are "old" (from November, or earlier) or more recent. We also don't know if things should get better, stay the same, or get worse. More wait & see. The neurologist asked Denise some times tables math questions and she couldn't...

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Three hours pass, Neuro appt

Yesterday was pretty good for Denise. The night before, she was on the phone until late, then finally realized that she was completely exhausted and fell asleep almost immediately. So I was worried that she gets overstimulated and goes bonkers. But the next day (Sunday), everything was fine. She was not at all manic while we were out at church & lunch at PandaExpress. She wanted to go other places while we were out on our pass from the nursing facility, but she seemed to understand our time limitations this time and was able to pick just one other trip for the day. As a test run, I brought her a catalog she requested from a jewelry store in the mall. Upon seeing a $22,800 Rolex watch on the first page, she said I should bring her another catalog; that one was way out of our ballpark. That's...

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Need for moving help Sunday, 8 months in hospital

Business first:We need some help moving Denise's caregiver from her current place into our place tomorrow (Sunday). Sorry for this late plea... the caregiver just now found out that her moving help is not available after all. All her stuff's in one room, so there's not much. But if we could get an extra set or two of hands tomorrow to help quickly load things up in Pasadena around 2pm and another few sets of hands to unload a few miles away in Duarte later in the afternoon, that'd be a tremendous relief for all of us. Please contact me ASAP if you can help (:: data remove 20050320 00:01:PST ::).Today marks eight months since Deinise went into the hospital. Two thirds of a year. Over one third of Jacob's life. To "celebrate" (because griping about it doesn't do any good, right?), we were allowed...

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Out of hospital, back at nursing home

Wow. What a couple of days! So much uncertainty, so little that definite enough to write about. Last night Denise was transferred from Huntington Hospital back to the Country Villa skilled nursing facility. Though she was doing well physically, she was getting increasingly manic and exhibiting compulsive behavior. She started tearing & cutting magazines to shreds... she was "saving" the pages & images she liked so she could file them away... every page in the magazine. Minutes before leaving, the neurologist tweaked the meds and the dosages. The neurologist told us that he no longer thinks we're dealing with just Reglan-related symptoms of withdrawl. He asked the SNF staff to keep an eye on Denise and notify him of any noteworthy behavior. Once back at the SNF, she apparently slept...

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Cocci present in liver, probably in brain, too

The liver test came back positive for cocci. The doctors say it's probably in the brain, too. That's not surprising, as we knew that she'd always have the cocci disseminated in her system and have to be on antifungal meds the rest of her life to keep it from getting out of control. As far as what caused the liver numbers to go out of whack (they're getting better) and what caused the sever pain, I have some questions. I'd like to clarify if these things were due to a new cocci infection flare-up or due to the damage that the antifungal med (Diflucan) can cause. Both are possible, and the hospitalist thought it was the latter. The ID doctor and the hepatologist will compare notes today and tell us what they think.As far as the brain issues and behavior goes, I wonder if that's due to new cocci...

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Liver biopsy done, Waiting and seeing

Lots has happened yesterday & today, but nothing conclusive to report yet. Still waiting for lab results (some labs were sent to UC Davis, where they really know their Valley Fever). Here are the headlines... tomorrow I'll try to post the details.- Liver biopsy was performed today- Even if cocci infection is active (liver or brain), the treatment is appropriate and the level of the meds can be upped if needed- Spinal tap shows no elevation in white cells (good... hopefully no infection) but elevated protein (I'm not entirely sure of the ramifications of this), nothing fungal is growing yet (but it can take up to two weeks to see the growth)- Liver enzymes coming down again (Yay!)- Feeding tube was unclogged today, but not hooked back up as of tonight- Neuro doctor is changing around some...

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No liver biopsy, Seroquil upped, Feeding tube clogged

The liver biopsy did not happen today. In fact, I heard that it hasn't been ordered. I don't know what to make of that. I'll ask tomorrow. Tomorrow the regular ID guy that's familiar with Denise's case will be back, so I'm on pins & needles to find out what the next step is. The feeding tube clogged this morning. People came to try to unclog it, even running a wire through it. But nothing worked, so Denise is going down to the radiology department tomorrow so they can have a look and hopefully unclog the thing. In the mean time, she's eating about half of each meal and having snacks in between, and again to day everything stayed down. She has not complained about the pain in her side, nor has she had painkiller. I wonder if the Seroquil (used for bipolar disorder, also for anti-anxiety...

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MRI shows new problem areas, Spinal tap

Denise slept through the night last night and has continued to calm down, thanks in no small part to mild drug (I forgot the name, but the neurologist explained that it's a dopamine inhibitor). She did not complain of the pain in her side today, nor did she get any painkiller. She said she ate fairly well at all three meals and had no emesis. Out of all the hospitals, she liked the food at Huntington the best, and she says she's packing it away while she can. She had some more tests & scans today, including a spinal tap tonight. She's in good spirits and was a champ through the spinal tap (fluid was clear, not cloudy... that's a very, very good thing). The liver biopsy should be performed tomorrow.The official results of the MRI are not in. Of preliminary concern tonight are "enhancements"...

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Admitted to hospital, Cocci status? Diflucan toxicity? Hepatitis? Reglan withdrawls?

Denise was admitted to Huntington Hospital yesterday afternoon. We have no idea how long her stay will be. She's in good spirits but has sever pain in her side at times (such as when doctors press on her tummy). Phone number to her bed is 626-535-6732, room 4525. Here are the nuts & bolts of what the specialists said that came to visit her last night.- Neurologist doesn't suspect she's having seizures, nor that she's bipolar (though will run tests to check). He thought that it's possible she's having withdrawls from Reglan. He'll give her something else and ease her off of it gradually. Again, the Reglan was stopped last Friday in hopes that it would cause the liver enzymes to decrease, which leads us to...- Hepatologist/GI guy is perplexed. Denise is gaining weight (98.8 pounds... different...

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Denise going to Emergency

Denise is being transported from the nursing home to Huntington's Emergency Room shortly. I'll finish out the next hour of teaching and then meet her & her caregiver at the hospital. This transport is for evaluation; she may or may not be admitted tonight. One of the specialists requested this out of concern over what's been going on since Friday or Saturd...

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Two requests for help, pronto

Snow gear for kids:Friends are going to take Gracie & Jacob to the snow in the local mountains tomorrow morning. We have none, zero, zilch snow clothes for them. If you're local and have snow clothes sizes 2 & 4-5 that we can borrow for the day, please contact me ASAP (cell 626-429-4244, pdjwilliams@yahoo.com). Otherwise, we'll start scavanging the thrift stores late this afternoon.Extra set of moving hands:This Sunday after 12pm: We need to rearrange furniture in prep for having Denise's live-in caretaker move in (even if Denise is still at the SNF). A couple of items require partial disassembly in order to move to other rooms. If two or three people come by for an hour or two, that'd make things much easier. Contact me if you'll volunteer. Did I mention that I'll cover lun...

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Blood draw for liver, Short home visit

Blood draw for the liver happened at 4:45 pm today. That means we won't hear results until sometime tomorrow. The pain overall has been diminishing as the days progress, however there was a very painful time this morning for her. She said that once in a while she can just find a comfortable position and the pain disappears completely. Interesting. Also interesting is a pattern for the pain, hot flashes, dizziness, and nausea... It's the worst overnight and during the morning. Might correspond to the milk of magnesia they're giving her each night to keep the GI tract moving along. And in going in the direction of digestion, the feeding that they're giving her has contained fiber, which clogs the tube fairly frequently. The word today is that they're going to change out the brand of feeding...

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Hyper again, Ab pain, Itchy

Denise had a better night overnight than she did the night before. There was still ab pain on the left side, even going up under her ribs. The doctor pressed on her and thought that it was caused by the enlarged liver. Apparently the liver itself doesn't have pain receptors, but the surrounding tissues and organs do, and aren't happy with the crowding. It's interesting to note that upon comparing the recent CT scan with one done months ago at USC, the liver has not changed size. So I don't know why the pain... constipation form stopping the Reglan? Who knows?She had a 300cc emesis. They're going to see if they can just give her tube feeding at night and start up a calorie count during the day to see what she's eating. We learned our lesson after the New Year's Eve discharge and will make sure...

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Ab pain, J-tube clog, No headaches, Night help, Monkey

Late last night Denise was in a fair amount of discomfort and even some nausea (which has been rare lately; they gave her a Zofran meltaway on her tongue and that helped immediately). We hired an overnight caregiver for her, and will do that again tonight and tomorrow night if she feels she needs the extra help. Denise didn't get much sleep and was always asking for pillows to be shifted, heating pads, ice, etc. She's been having increasing ab pain after the Reglan was stopped on Friday. While we're crossing our fingers, toes, and eyes in hopes that the Reglan is the culprit in abnormal liver labs, it has helped with peristalsis and kept food moving through her, as well as reducing food coming back up. By the way, four days after the Reglan has stopped, she had no headaches, seemed way less...

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Heart good, 102.5 pounds, Wigs

The cardiologist had good news. He said that Denise's ticker sounds good. He's not worried about the discoloration in the legs as long as there's no edema or pitting; it's probably a result of being laid up for so long and will go away. He thought the only reason he'd need to follow her is to be selfish so he can see how good she's doing. He's a neat guy, and he & his family's been following Denise's progress since she came to Huntington Hospital. While at the appointment she weighed in at 102.5 pounds! Also, she seemed a little mellower today. That makes concerns about seizures diminish. I think I may have forgotten to mention that her calcium was high during the last week. I remember that an electrolyte imbalance could've been a possible cause of her seizures in November. My understanding...

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First time back at church

Here's our family at church, finally with Denise again. It was her first time back in over seven and a half months! She sat in her wheelchair the whole time but stood up for this picture. She wanted to show off for you all. She loved seeing a bunch of people she knows through my school, including a couple young ladies that were students when Denise was a teacher aide at my school. She also had a visit from one of her sisters that hadn't seen her since Christmas. I see Denise every day, so it's sometimes hard to see improvements. But it was nice for Denise's sister, since Denise is so much better now than when they last saw each other.Medically,...

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Lunch pass, Playing dressup, Headache... hmm...

The day started out with a nice big 400cc barf that contained last night's dinner. Then it got much better. Denise got to come home on another two hour pass and ate lunch with us. She played "dress-up" with Gracie, and here's the picture to prove it. Gracie asked mommy if she had a "married" dress, so I got it down out of the garage, where it has been stored since the cleaners put it into a nice box to preserve it about eight & a half years ago. Denise was excited that she was still able to fit into the dress (and it's even loose right now). We will also get to hang out as a family tomorrow, as I found out that Denise will get one more...

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Pass home, Fish dinner, Reglan to be cut

Here's a picture of Denise & Gracie prepping fish dinner at home. Denise got to come home for a two hour pass. With her caregiver standing by, Denise helped prepare a meal for the first time seven & a half months. Under normal circumstances, not prepping the meal would be a luxury. Tonight it was a triumph, masquerading as an everyday task. Her caregiver, the kids, and our housemate pitched in for the prep, too. Denise even invited some neighbors over for a short visit (the neighbor girl made Denise a very nice get well card and poem, so Denise wanted to be sure to visit with her). The time spent at home seemed too short. We're going...

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Liver enzymes up, Dancing & almost hopping during PT

The liver enzymes did rise, and that's not the direction we wanted them to go. The infectious disease doctor's office was notified of the findings. The next thing we hope for is that the liver function being abnormal is a result of medication toxicity. She's on a couple of meds that can cause some liver problems. My nurse aunt is going to ask about reducing the reglan (for digestion) now that she's doing fairly well in the emesis department (Denise had a tiny bit of emesis late last night, but that's been the only episode for a week). Other meds may be tweaked so we can see what the effect will be on the liver. Since Denise is improving in so many ways, there's a decent chance that meds might be the cause for these liver results.Last night the feeding tube clogged again (hmm... maybe I didn't...

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Feeding tube clogged & unclogged again

Gracie was up much of last night. Actually, she wasn't really awake. But the many times that she came running into my bed, she was doing Judo-sleeping while I was getting kicked in the ear a lot. So I was already very exhausted when I got a call just as I was done at work this afternoon saying that Denise's feeding tube was clogged again. Rather than go to the hospital again, I went to the skilled nursing facility to try unclogging it. They didn't have enough people to assign one to sit and work the Coca-cola back & forth through the tube. Fortunately, it unclogged for me. Also fortunately, some friends from school were able to take the kids for a few hours this afternoon/evening. Gracie & Jacob loved spending some extra playtime with other little kids.Denise went to an Ash Wednesday...

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