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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December 2006 Update: Merry Christmas!

Just a quick post to wish everyone a Merry Christmas! We're blessed to have Denise at home with us for Christmas this year instead of the hospital!
We've received some more positive medical news and visited some of the doctors & nurses from USC & Arcadia Methodist to show them Denise's progress... updates & pictures will come at the end of the month's post.
And yes, that *is* an official "Christmas Story" leg lamp Christmas stocking behind my head.

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November 2006 update: Meds adjusting, Throat healing, Healthier Thankgiving

Here's a picture of Denise during a "heart exam." Yes, her heart was racing, as well as Gracie's. Just look at those faces! Seriously, since her cardiac specialist said a couple months ago that her heart function is returning steadily, Denise thought it'd finally be safe to go on a "thrill" ride at Disneyland. After she got off, she felt "flutter-hearted and light-headed," and in hindsight didn't think it was a good idea to go on this ride. She never wants to go on it again. Neither does Gracie.

Thanksgiving this year was much nicer than last year when Denise was in the hospital and couldn't hold food down due to the SMAS. This year we spent Thanksgiving in Escondido with my nurse aunt's family, my mom and other family. Compare the recent blog pictures of her with this picture from last year: Thanksgiving Huntington Hospital 2005

Medical developments:

• Denise is trying to adjust one of her meds (Risperdal... neurologist gave her permission to gradually lessen the low dose she's on and eventually discontinue it). That's a bump & go situation. We're glad that Denise is able to sense what the increases and decreases in meds are doing to her and adjust accordingly.
• We have not heard whether any cocci has shown up in the cerebral spinal fluid from her latest spinal tap, and we're awaiting an MRI to ascertain the status of the meningitis or the scarring in her brain tissue. We have appointments with the infectious disease doctor and neurologist December 12. Since neither doctor has contacted us with bad news, we are optimistic that the news will be good.
• The surgeon that performed reconstructive surgery on her throat said that the scar is continuing to heal nicely.

Non-medical life continued to head toward normalcy in November. Denise's energy level allowed her to help a little with special class projects for Gracie's & Jacob's preschool classes (Stone Soup Days... it's really cool!) and go to a couple birthday parties for the kids in Gracie's class. Some friends from Coalinga came to visit us with their new baby. They hadn't seen Denise since she was in the nursing home early this year. Denise also went to a women's Bible study at First Baptist Church in Pasadena and finally got to meet a group of women who had been praying for her over the long haul. Denise also took care of the kids by herself for some of the longest periods of time yet while I was away at a teacher convention.

At this point I'd like to spotlight a couple other people to pray for.

• A while back I was put in contact with a guy whose wife has been in the hospital since September (hit by a car, coma, brain injury, small slow improvements, long rehab ahead). He's got two kids at home. I kind of feel like I know one reason why I went through what I went through: to be able to minister to another guy that's going through a similar thing now. He's doing almost daily web site updates on his wife. Bookmark this: http://caringbridge.org/visit/jenniferparent
  
• One of Denise's friends just turned 34 and is fighting aggressive breast cancer. She was a huge inspiration to Denise when in physical therapy. She's got a blog much like this one: Kristen's Cancer Battle
• A woman that I've never met mobilized many people in Tennessee and several eastern states to pull for Denise. Now this woman's dad needs some pull. So we set her up a blog to get the word out: Updates on Pola's Dad
• Finally, our family... me, mom, brother, grandmother (who lost both of her children and a brother within a short period of time). My dad died in April. The first set of birthdays & holidays are hard after the loss of a loved one. He would've been 64 this Saturday, December 2nd. He liked a fine brew or a dry gin martini almost as much as he liked southern gospel music. So, odd a combination as it is, I'll probably be toasting his memory with a martini (poorly made, but I'll try) while playing a J.D. Sumner & the Stamps Quartet CD in the background this weekend.

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October 2006 Update: Throat surgery, Titers 1:16, LP

That's one of Denise's sisters way to the left of in this picture. She visited from Montana with our newest niece. The last time Denise & her sister saw each other, Denise was still in grave condition at USC University Hospital last September. So this was a much happier visit! You probably can't tell by the look on my face. Out of all the pictures, this is the only one that had her whole family (actually, her youngest sister is missing). And it's my worst picture. At least I'm hanging with happy company.

The throat surgery Thursday October 5 went well. You can view the previous post for the details. Denise has taken to wearing scarves to cover up the scar while it's healing. She just went for a checkup with the surgeon this morning and he says it look like it's healing nicely.

We had visits with the neurologist & infectious disease doctor on October 10. They went well. We'll be going every two months now. Titers for cocci are now solidly within the 1:16 parameter, same as last time, so at least things aren't getting worse. And the neurologist gave us some latitude to experiment with small adjustments to one of Denise's meds as needed, based on how she's feeling (anxiety, obsessing, etc.). We're grateful that the doses are very low and her symptoms are very mild.

A lumbar puncture (LP or spinal tap) was performed October 26th. This was done to keep an eye on the presence of cocci in the cerebral spinal fluid. Fortunately, the fluid looked clear. So we're optimistic that no cocci will grow when the specimens are in the lab at U.C. Davis. Cocci is slow-growing, so we won't know the results for a few weeks. She will also have an MRI of the head early in November to see the status of the meningitis and calcification of the basal ganglia portion of the brain, two more areas of damage caused by the cocci early on. Prayers, please.

Gracie had her 5th birthday party with some preschool friends. Denise was in the hospital last year for Gracie's 4th birthday, so this party was extra-special. It was a princess party, but some boys came as well (they were knights). Everything's about princesses and Star Wars right now. Maybe we'll have a Star Wars party next year? Cool!

Oh, Denise says that she's more than reached her goal weight. So if you're still praying for her to gain weight, you can stop now. She's also started reading the blog for September 2005. She still hasn't discovered the full story of what happened to her, and it's a long slow process. I'm increasingly glad that I typed all this up, as it's helping her understand, and there's no way I could've remembered it all.

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Throat surgery went well today

Oct 5 outpatient throat surgery went well. It was a dual-purpose surgery. Part of it was cosmetic, and that went well. The other part was a bonus that the surgeon was able to fix after he opened her up. The skin on her throat had attached to her trachea, so whenever she swallowed, the scar on her throat would move quite a lot. It was uncomfortable. And if my understanding is correct, there was also some muscle tissue that should have come together in front of the trachea, but was apart. So the surgeon fixed that as well. I didn't think there was any muscle over the trachea, but her tracheostomy was quite low. And I'm not a doctor, so what do I know? Tonight Denise's scar is already looking better than it was this afternoon. Thanks to our neighbor for driving Denise to the surgery, thanks to the school's Parent Teacher Fellowship for arranging effortless meals and beautiful flowers!

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September 2006 Update: Labs improving, Life normalizing, Disneyland family trip

Here's a photo of Denise at Disneyland, her first time with our kids. You can't see it very well, but her hair's coming in nicely (pinned back under Mickey Mouse ears) and is finally longer than my hair! Last year at this time, I doubted that Denise would survive a few more days. Look at where we are now!

One year ago I had the worst birthday of my life. Late at night on September 17 2005, I received a call after a birthday gathering at our house from the hospital saying that Denise had suddenly taken a turn for the worst. That began one of the darkest periods in her hospital stay and precipitated the transfer to USC on September 29 2005. This year I had the best birthday of my life! On September 17, Denise took me to Disneyland for my birthday. This photo is actually from when we went again as a family a few days later (annual passports are awesome!).

I went back to work this month, and Gracie & Jacob are now both at preschool. What a huge blessing to be able to send the kids to the preschool next to the "big" school I work at! Denise, while gradually improving, isn't capable of staying at home alone with a kid (much less both) for the entire time that I'm at work. By having me and the kids out of the way, that lets her focus on her main job: getting better. And I can't adequately describe how wonderful it is to see her assuming her roles with being a wife, mommy, and holding down the fort again.
A typical day for Denise consists of getting up at the same time as me and the kids. We trade off getting kids ready & making breakfast. She kisses us all goodbye, gets herself ready, and goes off to the city's little gym to do her physical therapy on her own. We found out it was way cheaper to join the gym ($100/year) and check in with a physical therapist every month or so than going to a physical therapy appointment several times a week and paying all those office visit fees. She then paces herself, accomplishing a few tasks each day such as shopping for groceries, paying bills, making some calls, doing a load of laundry, water the lawn, etc. She's feeling good about being able to contribute to the family unit again, and I'm stoked to have her help again! It's also empowering for her to be able take care of some of her own medical-related calls and paperwork. She then has lunch, then it's rest time. She crashes, napping for 2-3 hours. After we come home from work/school, we enjoy some family time and Denise frequently prepares dinner without needing any help from me. Then it's KP duty, bath time, more family time, and kids to bed around 8pm. Denise crashes shortly after the kids. She really wanted to volunteer at my school and the preschool all the time. But she's found out that the stamina just isn't there yet. It's improving, though. So in the mean time, she signed up to be a room mom assistant for Gracie's class. She plans to come in to do special things for Jacob's class as her energy returns, too.

Medical mumbo-jumbo, Lab results:
Based on what I heard at last month's Valley Fever Symposium at Stanford, we have requested an MRI and lumbar puncture. From what we learned, both of these should be performed with some regularity so that increased cocci activity can be detected early enough to take appropriate medical action and extend survivability.
Denise had a very important lab draw in September. While we're still awaiting the results of her titers that measure the concentration of cocci in her system, we got some great news. Get a load of this:
Liver enzymes:
SGOT 28 (within normal), down from 42 in August!
SGPT 36 (within normal), down from 60 in August!
Alk Phos 230, down from 235 in August. Normal is 20-125, but that's WAY down from June when it was at 353. So the trend continues to march toward normal.
Kidney function:
Creatinine is 0.8 (normal is 0.5-1.2). Amazing, considering she had kidney failure twice, she was on dialysis a year ago and we were expecting it to be that way for the rest of her life, IF she survived.
CBC:
All her blood lab results are in normal! Her hemoglobin even went up to 14.1 (normal is 11.7-15.5), so she's definitely not anemic.
Since the liver labs were being used an indicator of cocci status, and since the liver labs are improving, I'm optimistic about the results of the titers that we haven't seen yet.

On deck for the coming month is plastic surgery on Denise's trach scar on October 5th. Also we have important appointments with her infectious disease doctor and her neurologist October 10th. Hopefully there will be nothing of concern to post from those events, allowing us to wait until the end of the month for the next post.

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