June & July 2007: Titer down to 1:2-4, Liver normal

Denise's appointment with the infectious disease doctor was loaded with news that put smiles on our faces. Her liver labs all came back within normal... even the Alk Phos! Considering that she had complete liver failure & was yellow in the hospital two years ago, and had what is suspected to be cocci-caused granulomas in the liver last year, this is amazing! Better yet, the cocci titers came back from U.C. Davis at 1:2-4, lower than the 1:8-10 that we heard about six months ago. So things are progressing nicely. Her next test will be in October, as will the next visit to the I.D. doctor. Denise is trying the South Beach diet and feels like it's helping get her back to her pre-illness weight and reduced the ab swelling (recent scans show no ascites, indicating no presence of infection). So we're relieved to have some grasp of how to cope with the onset of the GI-related problems since she came down with Valley Fever.

This summer has been so much better than two summers ago (when Denise was in a coma) and last summer (when she was doing so much rehab). I got off work for the summer in June and life's been good! My school honored me by dedicating this year's yearbook to me, and they also had wonderful things to say about Denise continuing to heal & thrive as a testimony to God's mercy (not to mention the hard work of the medical teams). We gave Jacob his summer haircut (mohawk). We went to court for the first time ever (and hopefully the last). It was just small claims court, and it was surprisingly low stress... nothing like Judge Judy. We went to Disneyland and were treated to a night at the Disneyland Hotel (the kids loved the Peter Pan-inspired swimming pool there). We went to visit Denise's sister & brother-in-law in Montana for a few weeks (this picture of Denise was taken in Philipsburg MT). We crammed in a lot of first-time activities for the kids: a visit to Yellowstone, fishing, horseback riding, driving a boat, going to a dirt track car race, and Gracie even learned how to shoot a rifle and took horseback riding lessons. I tried wakeboarding (I'm exactly as unsuccessful at that as I am at water skiing). And we celebrated our 10th anniversary in July. A couple years ago, I didn't think that we'd make it to this point, but I sure am grateful that we're here!

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June & July 2007 update

On this date two years ago, July 18 2005, Denise went into the hospital and our lives changed.
There's so much good stuff to write about from June & this month... but we're in summer vacation mode, so I'm going to be a little bit lazy and post the happenings from June & July at the end of July.

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May 2007: Ab distension, Weaning off seizure meds

The tall guy with Denise in this picture is a parent from my school that works at USC University Hospital. He initiated Denise's move there during one of the times that we thought we'd lose her (the post for September 27, 2005 has those details). Our school had a fundraiser dinner, and he was there. He hadn't seen Denise for almost a year and was glad to see how much she has improved. He's one of our medical pro heroes, along with the other people pictured in the January 2007 post. Personally, I think that Topps should maket trading cards of all these people.

We paid a visit to the GI doctor this month. A couple of the most frustrating things for Denise has been the change in body shape and the slowing of the GI tract (she was described as being a "GI cripple" at one point during her ordeal). Several times, people have "congratulated" Denise on being pregnant, or asked when she's due. So over & over, Denise has had to explain that she's not pregnant, we can't have any more kids, she's just shaped this way due to secondary issues from the cocci infection, etc. etc. etc. She knows that people certainly mean well, but having lost baby Daniel during her ordeal in the hospital, painful issues get brought up over & over. So it's not just the physical that's frustrating; it's the emotional as well. Anyway, we already found out from the neurologist that the Risperdal that she was on causes increased appetite (this was handy when Denise weighed 87 pounds. Denise prefers the Abilify that replaced the Risperdal, by the way... she seems to have more energy. We also learned that the Trileptal slows metabolism (anti-seizure med). So we hope that the combo of switching to Abilify and weaning off of Trileptal (more on that below) will ease the abdominal distension.

The lab results from tests ordered by the GI doctor showed no thyroid problem (he suspected there was a thyroid problem, and we're requesting a visit with an endocrinologist next). He's suspecting that the stress of what she went through, and the duration of it all, caused excess cortisone in her system. My limited understanding is that this would slow everything down (GI tract, metabolism, everything). The good news is that things can apparently return back to normal over time. In the mean time, Denise has tried two meds to help stimulate her GI tract into working regularly, and they seem to work on & off.

She's been seizure-free for well over a year now, and the neurologist told us to cut Denise's already low Trileptal dose to half of what she was on and try to get her off of it. She went down one week ago tonight, and it takes a while to get it out of her system. So I'm supposed to keep an eye on her to see if she spaces out, stares, etc. No problems so far. Of course, this presents a slight inconvenience, as someone needs to be with her for a while while driving for a couple weeks. But I'm off for the summer soon, so the timing's great.

Next month she gets a fluorescein angioplasty of the eyes to determine in great detail what the status of the scarring is in her eyes. This will be done by the doctor that's familiar with cocci that I wrote about in the last post. We also have an appointment with the infectious disease doctor, the psychoneurologist, and a checkup of the trach scar.

I went to a funeral for a great uncle this month. I remember him most from when I was much younger, when we'd see extended family at gatherings every couple years. He was a neat guy, and funny (during the eulogy it was stated that if he were with us and saw anyone sad & somber, he'd have said, "Knock it off!"). So I was looking at the casket and started choking up. Then I transferred what was happening (his funeral) to what what could've happened to Denise. I was thinking of how close Denise was to being in that casket. Then I really started choking up. Fortunately, there was no booming voice telling me "Knock it off!" Anyway, I got home even more excited than usual to see my wife. I'm really looking forward to this summer when school gets out. After spending summer 2005 at the hospital, and spending summer 2006 doing the tail end of rehab, we're really looking forward to a "normal" summer now.

At church we happened to plop down next to this wonderful family. We didn't recognize them, but they recognized Denise. They were keeping on top of her situation from the very beginning, before this blog was even started. How? They've got connections to Arcadia Methodist Hospital where the journey began. It even turns out that a sister (in-law?) was one of the pharmacists that provided Denise's meds to the ICU. Small world!

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April 2007: Retinology appointment, Switch meds

Denise turned 34 this month, and to celebrate we went to the Napa Rose restaurant at Disneyland (sorry about the grainy camera phone picture). The food was stellar, as was our company (a really neat brother & sister; the brother had a long hospital stay after a nasty accident, and the family set up a blog). But the best part was getting to spend a special birthday evening with my 34-year-old wife, whom we thought we were going to lose at age 32. I'm one blessed man!

Here are the developments from this month...
We had an appointment with a retinologist that's new to the office we've been going to, but he was quite familiar with cocci and the effects that it can have on vision. Bonus: Other doctors that have patients with cocci-related vision damage seek his opinion! So we're confident that we have the right guy. He found that the optic nerve is no longer swollen (indicating that there is no infection), however there is still retinal scarring. In spite of that, Denise's vision has improved! Where there used to be an area of darkness (the cocci caused her to go partially blind in one eye), now there's just an area of slight blurring. We have to go back again for a fluorescein angioplasty so he can really take a look at what's going on with her eyes.
We paid a visit to a doctor that a friend from the kids' preschool recommended. He switched out the Risperdal in favor of Abilify (it's for a different primary condition, but he thought it would benefit Denise). She likes it so far and has felt more energetic (Risperdal causes drowsiness), no signs of manic behavior, no signs of seizure. The new med doesn't have the effects of increased appetite & slowing the metabolism. She's all excited about starting to return to her pre-illness weight. Just tonight she showed me how her pants are starting to fit loose and sag. I'm tempted to ask the doctor for a prescription for myself. :O) The doctor that had Denise try the Abilify also thought that she could eventually go off of that and the anti-seizure med as well, since they're both in such low doses. So we'll see what happens.
On a sad note, my dad died a year ago on the 18th of April. Easter was a little difficult for me this time, more than Christmas or Thanksgiving for some reason. My guess is that it's because in my mind, his passing revolved around Easter last year. I drove him to the hospital going into Easter weekend and we lost him two days after Easter. Time heals.
Ending on a lighter note, Denise's blog crossed the 130,000 hits mark in April! I'm glad that the hits have slowed down... things are normalizing and there's just not as much reason for anyone to check this blog frequently anymore. I'm also glad that the hits still trickle in... thanks for caring enough to check up once in a while.

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March 2007 Update: Cocci Study

We participated in a 3 mile ABI (acquired brain injury) awareness walk this month, and here's a picture of Denise cooling down with the kids. Months ago I was put into contact with a man whose wife was hit by a car in September and is ever so slowly recovering in the hospital. Meanwhile, he's trying to maintain some normalcy... grappling with balancing caring for her, keeping up with work, and raising a daughter & son that desperately want mom back home. Sound familiar?

Last month the neuro doctor said to try lowering the already very low dose of Risperdal. That didn’t work well, as we had some issues and Denise had a very bad day that required me to leave work. She went back to the previous level and things evened out. So we'll look into trying something different in hopes of finding the right meds and the right timing.
My nurse aunt & I went to Phoenix AZ for the "Cocci Study Group." It was incredibly informative! We had access to the best of the best in cocci research and treatment. Several doctors took the time to hear our concerns and offer advice and encouragement. After having gone to the cocci symposium at Stanford in August, I felt much better-prepared going into this meeting. We found out that there is one other case of a pregnant woman with cocci in the brain. In her case, she did have a baby (born at 8 months gestation) and has been out of the hospital for about 5 months. I don't think her situation was as grave as Denise's. Still, it's remarkable that she survived with cocci in the brain. We also heard of a case where a man contracted Valley Fever without living in or visiting a cocci-endemic region. He purchased a vehicle from a cocci-endemic region and had it delivered to his home. The dust in the vehicle (and in the AC ducts) contained cocci, and that made him ill. I could make this quite a long post if I were to relate everything that I learned (and I only understood a small fraction of what they were saying). One very helpful doctor commended me on jumping in to learn about cocci. He said it's not one of the simpler organisms, nor a simple disease to understand. So that made me feel less stupid.
The high point of the weekend for me was that in the restroom, the Grand Poobah of cocci research chose the urinal next to mine in which to pee. Wow!

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February 2007 Update: Brain damage healing

A big milestone for Denise is that we did some swing dancing at a friend’s house. Denise exhibited incredible balance and coordination. Dancing for her is like riding a bike for most people… once it’s learned, it’s never forgotten.
I, on the other hand, was as lame as ever, but still had a great time dancing with her!

Super news in the brain damage department! The most recent MRI showed only “one punctate lesion” (that’s one point of damage that lit up). The MRI before this one showed multiple lesions. So that means that things are healing! I must admit that part of me wants another MRI, just to be sure. It seems too good to be true!
The February cocci titer came back “negative” for cocci, but it wasn’t sent to the usual lab at U.C. Davis. My school changed insurance companies beginning in February, and getting the cocci tests to be handled by the preferred lab is one of the small issues to work out. The I.D. doctor said that the lab that handled the most recent titer isn’t as sophisticated. We think that we have everything straightened out now, though. Cerebral spinal fluid is still negative for cocci.
Liver: alk phos is at 158. That’s down from where it was last time, and another notch toward normal.
Denise feels like her vision is improving (she’s partially blind in one eye from the cocci). We’re going to get her to a retinologist to see if the eye lesions have resolved and have a look at the optic nerve (it was swollen about a year ago at the last exam).
She’s been having ab swelling and we’ve been advised to pay a visit to the gastrointerologist again. The change in body shape has been very frustrating for Denise. She’s been doing aerobics and eating healthy, but it’s been hard to get back to her normal pre-illness weight. The neuro meds she’s on can cause weight gain by changing metabolism and increasing appetite. This was helpful when she couldn’t hold food down and weighed in at 83 pounds, but she says it’s getting a little old now.
The neurologist wants us to try lowering the Risperdal again. Denise’s on such a low dose, she almost might as well not be on it at all. But the last few times we've gone lower, we felt the need to go back to the current level again. Denise would rather be off of this med, as it also can make her pretty tired. Once the Risperdal is gone, the only other med to ween off of is the Trileptal (and Denise has been seizure-free for almost a year!).

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January 2007 Update: No cocci in CSF, liver normal

We're having a very Happy New Year so far and hope to have many more!
During my school’s Christmas break, we paid visits to Methodist Hospital in Arcadia and to the office of Denise’s doctor from USC. These two guys called the shots that pulled Denise back from death over & over again. They seemed about as happy as I am to see Denise alive & well. And below are pics that include just some of the people that were on the teams that worked so hard for Denise (some of these pics are from before our Christmas vacation visit, and this web site doesn't have the capacity to let me post all the pictures I wanted to upload). We hope to make it by USC University Hospital and Huntington Hospital to thank the crews there as well.

Visits to the specialists have been fewer and farther between as time goes on. This month, there were no appointments. We’re glad for that.
Last month’s visits to the specialists were loaded with good news! The cocci titer came in at 1:16. No evidence of cocci was detectable in the cerebral spinal fluid. Liver enzymes were normal (amazing, considering how bad her liver function was). Denise had an MRI to see if the damage to her brain has healed over the last year or so. We’ll get results during next month’s appointments. Lexapro was discontinued (antidepressant, neither Denise nor I thought she needed it, but neurologist thought it’d be good to have her on a low dose, just in case).

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