Some big improvements

Here’s a long post covering two days, so get comfy, but not so comfy that you don’t want to jump up & cheer!

Top of the news is that Denise is doing better. Still critical (and in isolation... gown, gloves, mask needed when I'm with her), still not out of the woods, still weak, still dealing with some infection somewhere and resulting high fevers. But better. In fact one of the doctors described it as having "a different patient this afternoon than we had this morning." It's been encouraging to hear several people say that Denise can recover from this. So there's some pretty rapid things happening, and they seem to be in our favor.
The most dramatic improvements are a higher cardiac index (saw it go as high as 4.2, SVO2 in the 60s & 70s mostly) and increasing urine output. The ejection fraction according to the EKG was 10 (low... yikes!). But the doctor said that between judging the heart's condition based on the EKG (which I learned has some subjectivity in the reading) and the cardiac index & urine output (kidneys wouldn't work unless the heart can get enough oxygen pumped to them), he said he'd "listen to the urine." I just thought that sounded funny enough to quote. Anyway, her oxygen saturation has continued to be in the high 90s, heart rate still fast (127-152), blood pressure acceptable (I saw 118-127 systolic, PAP 52/31, CVP 15 for the nurses among our family & friends) with about 3 micrograms/minute of Dobutimine. I saw a drip for nitroglycerine as well. I could describe that bit of news as "Dynomite" but that would be horrible punnery.
As far as breathing, she's on 35% oxygen concentration & a PEEP of 5 from the vent (another one of those Servo-i vents that offered the bi-vent mode that was so beneficial earlier in her struggle). At times her breathing rate went to a nice 22.
She got 2 units of blood yesterday because the hemo count dropped to 8.? (sorry, don't remember the tenth). I don't know what any of the other hemo results were. Arterial line inserted yesterday.
J/G tube inserted, too. She already had the gastrostomy tube, but it was replaced with another one, then a tube inserted inside of that goes to the jeujenum. If I understand correctly, the hope is that putting food directly into the intestine(J-tube) rather than the stomach (G-tube) will reduce the vomiting. The feedings started today at 10cc to see how she tolerates the "food" (Novasource 2.0) that looks like liquid Silly Putty.
On Tuesday, Denise was injected with the isotope for a gallium scan, which they anticipted would be performed at USC. Turns out that this would be a last resort. Instead, (and I hope I remember this right) a scan with venous contrast might be on deck. She's already had an indium scan. But that was a nuclear medicine thing, and the venous contrast is apparently tracked with EKG equipment.
Yesterday they were not using Tylenol because of questionable liver function. Today it was used and it seems that the liver is doing somewhat better. The whites of her eyes look a little yellow to me, but hopefully things will progress toward healing.

The infection that’s causing the fever is quite the enigma. The fevers went up to 103.5, then an ice bath brought it down to 99.8. I’ve noticed that some of Denise’s skin is peeling off in places. I can’t help but wonder if the alternating heat of the fevers & then sudden harsh chill of the ice is blanching her skin, same as a peach or tomato. Anyway, throw everything you’ve got into lifting up the infectious disease doctor. These infections were/are the ultimate causes of the other problems. Once the infections are licked, the road to healing will have a smoother surface. He gave me a great deal of encouragement today. In spite of the cheerleading I’m doing when visiting Denise (which isn’t much, with all the times I’m turned away due to all the procedures), I started to crack a bit. The I.D. doctor said that pregnant women who have had disseminated Valley Fever (cocci going beyond a lung infection) have nearly a 100% mortality rate, and the cocci has gotten into the brain. Denise’s brain is uninfected, according to the spinal tap weeks ago and evidenced by her cognitive abilities & physical coordination when not loopy from sedatives & painkillers. That was a major boost to morale amid all the pressure of this ordeal. On a side note, the I.D. doctor has perhaps the best enunciation of anyone I’ve met in several years. If his gig as a doctor ever falls through (fat chance), he could make a living by narrating audiobooks.

I'm glad there's been a turn for the better. I (and I'm sure lots of you that are medically-inclined) would like to know what was done medically to help her out. Different meds, equipment, techniques, timings... what? I've heard of lots of switching around of meds (I've heard just about all the names before in our ordeal). I heard a suggestion that she may have been just pulling out of the trough of sepsis as she was handed off to USC. I heard that the p/a catheter might have been giving inaccurate readings. Indeed, while at Arcadia Methodist, that was suspected and they were planning to replace the p/a catheter but knew USC would just pull it out and put in a new one anyway, so it wasn't done. Actually, I heard many things that might have been the case in explaining why there's been such a rapid improvement in some of her numbers. I hope that as a few more days pass, there might be a definite answer. If not, I'll still be happy, of course.

It's been an adjustment at this hospital. Extremely busy, and as such, sometimes hard to catch someone to find out exactly what's going on (actually, it's so busy, I feel like I'd be bothering someone if I asked my usual number of dumb questions). There are uber-doctors teaching residents, fellows, interns... peppering them with questions at an astonishing pace. It's intense. I listen in whenever I can. I tried taking notes and then finally gave up because my writing was so sloppy, I wouldn't be able to read it. Now I know why doctors write that way. There are questions, suggestions, scenarios, facts and theories all jumbled together. So it was difficult for me to determine what exactly was going on with Denise. During one of these exchanges yesterday I heard someone ask when the gastrostomy tube was put in. I butted in and said that I have been recording such things on this blog, and they pointed out a computer & told me to find the g-tube insertion date. So I did, and it seemed to be something that mattered to them. I was elated that this web site might in some way help the doctors heal my wife faster. Later, a funny thing happened (read: I made a fool of myself). Amid fast & furious questioning & answering, I heard something about attempting bi-level ventilation. Emboldened by my previous perceived usefulness, I blurted out (as fast as I could, to keep pace with them) everything I could remember about Denise going from the "old" vent to the new Servo-i vent in bi-level vent mode, how beneficial that was, then attempting CPAP mode, how long she tolerated that mode, at what oxygen concentrations, PEEPS, and everything else I could remember. There was a short pause. Silence. Somewhere in the distance, a coyote howled. Then the "teacher" doctor said that he was asking that question primarily so that the residents could answer it, for educational purposes.
Doh!

What else today...
Oh! At one point Denise indicated that she wanted to touch my face & hold my hand without the gloves. That was a drag. But at another point, she had her forearms up. Usually she's raising & lowering her forearems repeatedly, but this time they were just up, perpendicular to the floor. I asked if she was exercising (shook head "no"), stretching (no), in pain or discomfort (no), trying to draw my attention to something (no), if it just felt good to do that (no), praising God (yes). That's my girl. Along these spiritual lines, I forgot to mention something that the chaplain from Arcadia Methodist brought up quite some time ago. I told him how, even though Denise was sedated, couldn't move, talk, eat, or do anything, even though she was near death, God was still using her to draw people nearer to Him. I told him that some friends have told me that their entire church congregations would pray for her during services sometimes. The chaplain said, "Across denominations... Wow, God's even using Denise to unite the Baptists! He can't do that alone." Just thought my Baptist buddies would get a kick out of that.

Getting hooked up at USC University Hospital

The ride to the new hospital went well. They let me go along (a rarity, apparently) and let Denise listen to some music through headphones on the way. She kept pulling one of the speakers out of her ear. We reached the hospital during the shift change and were not allowed into the ICU. They immediately began changing out all the tubes, hoses, needles, catheters, etc. to be compatible with their equipment, which was still going on at almost 11pm tonight. Denise's dad & I met the doctor that will be continuing Denise's care. We came away encouraged by some of the things he had to say... they only work on the sickest of the sick, Denise's age & previous good health is a plus, and they'll keep trying even if her heart stops again & again. He also reminded us that we can anticipate a long haul with progress and setbacks. He also said that he wouldn't anticipate anything earth-shaking until tomorrow, and we couldn't visit with her for several more hours, so we went home.

At this point, let me back up 24 hours to late last night. I was tipped off that a parent from the school I work at is a cardiothorasic surgeon at the USC hospital (I had no idea... all I knew was that he & his wife had great kids). Sensing that I was feeling discouraged, he felt lead to talk to me. He told me about a very sick patient with horrible stats that is probably going home soon. It sounded like it could have been Denise... same conditions, same failures, same meds, etc. He also said that Denise needs me to be a cheerleader. So I put on a skirt. Just kidding. She needed someone to rally for her, keep the fight up in her, and make her know that there's still hope. According to reading the blog, he thought that Denise's doctors from Methodist were right-on with their treatment, but perhaps the USC hospital might have some resources that might help Denise, even beyond what Methodist had already done. So I left a note for Denise's doctor late at night. First thing this morning, Denise's doctor said that the USC move would give her a better chance, USC had accepted Denise, and there was only insurance & red tape to work through on our end. Turns out that the parent, while working at USC, became critically ill and became a patient there (I know now what it's like to have coworkers taking care of me). Denise's doctor was at USC at the time and remembered the parent. Small world sometimes.

As far as stats & procedures today, the numbers looked about the same to me, and heart is very weak. There was a gallium scan on deck, and the need to change the p/a catheter in the heart. The gallium was injected (it's supposed to cluster at the site of an infection). But Denise was transported before any scan could be done. The doctor said that since everything would be changed out when Denise got to USC anyway, the p/a catheter would wait. Today was such a whirlwind, I can't remember much else (maybe because I haven't slept and I'm still sick). But I do recall that even though they were planning on moving Denise out, care was still going full bore, as if she were staying put.

Thank You
Somebody left a gift for Denise, with no card attached (gee... maybe it wasn't for Denise). Thank you to whoever left the little sculpture of the mommy angel holding hands with the little boy & girl. I'm not a knickknack guy, but that little thing was a tear-jerker, considering what we're going through. Definitely a hit.

THANK YOU, THANK YOU, THANK YOU!!!
I'm nowhere near eloquent enough to properly express my gratitude to Denise's doctors, nurses, and other staff in the Methodist Hospital CCU. I said it before and I'll say it again: You are the conduits through which God's been blessing us. Reading this blog, you may have noticed that I keep using "they" or "the doctor" or "a nurse." All along, I've wanted to name names and give credit where due. But I figure that there's probably a liability issue, privacy clause, or some other thing that might get someone into trouble if I got specific. I still don't know where all this is going. The doctor has made calls that have gotten Denise through some very scary situations. He's been at the hosptial on his "days off" after his wife had a baby to personally check in on Denise (Mrs. Doctor, thank you for letting us borrow your hubby so much). That hospital is incredibly lucky to have him. If I ever get into a scrape, I'd like this guy in my corner. Same goes for his colleagues. There's another doctor that got Denise's kidneys working early on when things looked bleak. I appreciate another doctor that put up with my frequent stupid questions about infectious diseases.
And don't even get me started on the nurses! I can't imagine a batch of nurses that could be any more caring. Toenail painting, hair styling, massaging, joking, encouraging... I feel like they took a personal interest in my wife, and for that I'm ever so grateful. I'm conviced that we would've lost Denise a few times during the last 2 1/2 months if it weren't for the nurses being so attentive and competent. Total pros.
I've probably had someone from every branch of hospital operations checking on Denise... payroll department, environmental services, floor managers, security, the brute squad (the ones that the nurses always call in to help turn Denise), food service, physical & occupational therapy, cashier... Sometimes I feel like just about the whole hospital cares about this struggle.

Transferring to USC University Hospital

Denise is being transferred to USC University Hospital, departing at 5:30pm. I'm riding along in the transport vehicle. I'll post more when I know more & have the time.

Heading toward cardiac arrest

It seems at times that we are fighting with God over Denise.
Things are still quite bad this evening. I had to come home to eat during the shift change. Earlier today my aunt asked the doctor what we can expect. It seems that the conditions and numbers are heading toward cardiac arrest. Could be today, tomorrow, a week... no telling.
The Dobutimine has had some positive effect, but I don't know that it would be enough to turn this around.
Denise is on Ativan and morphine now. She will wake once in a while for a few seconds. I did get some kisses & some important words with her. I asked her if she was scared and today she shook her head to indicate "no." I told her that her heart is weak, the deck is stacked against us (but there are always wild cards), and we might lose her. Our pastor from Lake Avenue Church came over (he's been coming over a lot during our ordeal) to pray. Even though she indicated days ago that she wanted serene, mellow music, I played one of her favorite Twila Paris albums that's a little upbeat. When asked if she liked it playing, she nodded "yes." The respiratory therapist snuck a little orange juice onto Denise's mouth swab tonight.
They were just about ready to finish dialysis when I left. They may take Denise for another fancy scan to try to find any infections. They're still throwing everything at her that they've got.

Heart deteriorating, should we do CPR if it fails?

Denise's cardiac status is deteriorating. The doctor called to say that if her heart arrests, it may not benefit her to try CPR, as the heart is so weak it may not be able to get enough oxygen to the vital organs, brain included. This is the same conversation we had last Sunday. He didn't know that we should get her out of the Morphine haze (no Ativan drip, that was a mistake in my last post) in order to ask her what her preference is. She's not a good candidate for any type of surgery that may be needed. But she probably can't handle another hit like she had a little over a week ago, cardiac status being what it is. In the mean time, they're trying to do everything they can, and being aggressive about it. But if the heart stops, we have to decide whether or not to try CPR. They might try using a drug called Dobutimine, but I haven't had time to figure it out. I just wanted to get this simple post out to you. I'm sick and do is Jacob, so I took the day off work. This is turning out to be one very stressful morning.
Pray that the heart doesn't stop, and that Denise can heal.

Slow day, RMSF vs. Valley Fever

Slow day with not much new information (being a weekend) and not much change that I can see. Better than a week ago, not as good as just before that. Denise was "out" just about the whole time (Ativan & morphine). They also started an insulin drip again so they won't have to jab her whenever the blood sugar's too high from the TPN IV drip. That I saw, her fever didn't cross 103. Her oxygen concentration was turned up to 50% late last night, but was 40% the whole time I was there. Heart stayed at 132 bpm on average, higher during a coughing fit or obvious discomfort from turning. Breathing hovered all over the 30s. And again, I'm not feeling well, and will not be going over to the hospital tonight.

I just remembered a comment posted weeks & weeks ago asking why we started off with a diagnosis of Rocky Mountain Spotted Fever (RMSF) and then it changed to Valley Fever. Great question... one that we asked, with a great deal of frustration. The reason is that the doctors made the best guess at the time, based on symptoms (very similar) and where we had been (in Tennessee, trying to buy a house). RMSF is endemic to where we were, but difficult to diagnose, requiring tests with a time span in between. According to all web sites I checked, the treatment for RMSF starts before the diagnosis can be confirmed positive. That's what they did with Denise. Then, if I remember correctly, one culture of four started showing a fungus. The doctors thought it was probably just a fluke, but started antifungal meds just in case. It turned out that the fungus was cocci, the cause of Valley Fever.
Denise grew up on a farm in Illinois, then spent her JH & HS years in the central valley of California, where Valley Fever is common. We had been there to visit her parents many times, and the only problems we ever had was some congestion if we stayed too long. Many people are exposed to the cocci, and in healthy people the problem doesn't get beyond feeling like a bad cold or flu. Last winter was very wet for us in southern California, and according to one web site, the cocci fungus grew like crazy in the moisture. Then the heat came & dried it all out on the surface of the ground, being kicked up by wind, cattle, traffic, etc. In May & June, Denise went to visit her folks with the kids so I could do some home improvement projects without anyone under foot. About that time, Denise was at her third trimester of pregnancy (high risk group) and gestationally diabetic (diabetics also being in the high risk group). We may never know when the fungus first got into her system, how long it may have lay dormant, or what triggered the cocci to start making her sick. But it went beyond the usual infection of the lungs (causing the aforementioned cold & flu symptoms), and spread to other systems, which is called Disseminated Valley Fever. It's very rare to have it get that far (though we have received emails from people that have had Valley Fever in all stages), and it's got a high mortality rate. The last batch of cultures have not shown the cocci, but Denise would need to be on antifungal meds indefinitely anyway. The infections we're dealing with now are apparently common hospital-related infections, but just as devastating. If you'd like to really bone up on Valley Fever, check the link on the blog site for the Valley Fever Center for Excellence. Yes, the site looks a little bit goofy, but the resources link from that site is about as exhaustive as I've found.

In the mean time, keep praying/thinking/working us through this. Specifically, Denise needs comfort/rest/sleep, infections & fever need to go, heart & breathing rate need to slow down, heart needs to be able to squeeze out more blood with each beat, GI tract needs to work consistently (it's on-again, off-again), liver & kidneys need to function better (currently dialysis every few days is helping quite nicely), breathing/oxygenation needs to maintain or get better (so far, so good, considering she's on a ventilator). So everybody write that list down and tack it on the fridge.

Tough conversations, Magna Doodle pen pals

As of today, kidneys & liver still not functioning. I'm told that it'd be unrealistic to expect them to "kick in" like they did weeks & weeks ago. It'll be a much more gradual process. So we're just expecting dialysis once in a while. After a few days of relatively low fever, she crossed the 103 mark again. The feeding tube has been stopped and IV nutrition started last night. She's had a couple bowel movements, so we're glad for that, but a few times she's vomited up water & Tylenol (that Flexi-Seal was reinserted today). Earlier today her heart rate & breathing rate started racing, and they had to turn the oxygen concentration up to 50%. So up to that point, things seemed just a tiny bit worse today than yesterday. Then just before dinner, they started her on a morphine drip & gave her some Ativan to relax her. Her heart rate was back to the 120 range, breathing still fast (30s), blood pressure holding about 117/77, with the help of 5 mics/min of blood pressure medicine, oxygen concentration 40%. At that point, she was pretty close to yesterday's condition. I'm not going back tonight because I've got a sore throat. It's a drag, not only because I can't see her, but also because tonight's nurse is pretty tight-lipped about what's going on, especially over the phone (those privacy regulations are in place for good reasons, but I wish they didn't exist right about now).

Yesterday was more interesting.
After Thursday's removal of 6 liters of fluid, her blood pressure dropped. This was to be expected, but it was still a bummer to see 89/57 on the display. Later in the day she stayed around 109/66. Heart in the low 120s. Respirations low-mid 20s. We got a good bit of news in that her hemo count was over 11, white count 10.8, plateletes a little low (apparently due to antibiotics?). These numbers are several days after her last unit of blood. So I believe that the marrow is chugging along OK.

But that wasn't the interesting stuff. Our "conversations" were. She wrote "So what happens." She wanted to know both what happened recently that everyone's been talking about (last Saturday's crisis), and what's going to happen next. I tried to explain things as best as I could understand them, in a way that wouldn't alarm her or cause her to lose hope. Speaking of hope, I had just finished the chapter on hope in the book I'm reading. That was pretty handy in talking to Denise since yesterday. She was also able to speak, saying "I love you" and "They leave it (the tracheostomy cuff) open sometimes." Given the vomiting, I asked a respiratory therapist to come check the cuff, and he said it was good... she was just getting enough air to force words out sometimes in spite of the cuff. Denise wrote that she had a dream wherein she was pregnant with twins. She also wrote, "If this don't go well I'll be stuck (here)." I asked if she was afraid of being stuck in the hospital for life, and she nodded. I asked if she was scared of dying, and she nodded. So I tried to pull it together once again for the pep talk about how well she's done already, there's a great team taking care of her, her fighting spirit's helping, how much prayer's going into this ordeal, how she's better now than she was 8 weeks ago, how she's a long way off from dead (she gripped my hand really hard as if to prove it)... I also made mention again that if she doesn't make it, we've got the hope of seeing each other on the flip side. Then I thought of something that was emailed to me by some neighbors of Denise's parents. In addition to the pep talk about not losing hope, and in addition to the reassurance that our faith provides in the event of physical death, the sick loved one may need "permission" to depart us; they need to know that we'll somehow be OK if they die. So I told her that, as eloquently as could be expected, bookending it with encouragement. Of course, it's just about impossible to feel like we'd be OK without her. These are just not conversations that I expected to have at this age. I received an email from a "friend I haven't met yet" that said they secretly wished their spouse wouldn't be around most of the time, because then everything would be so much smoother, but our ordeal has changed that thinking. Good. It ain't worth having someone gone just so you don't fight over squeezing the toothpaste from the middle or the bottom. By the way, Denise & I found a one-cent solution that licks that problem. As you use up the toothpaste, fold up the tube from the bottom, holding the folds in place with a large paper clip as you go.

Gracie has been asking if she can visit more frequently lately. I told her that mommy is still sick and needs more rest, so the kids can't visit right now. Overhearing us (me & Denise's folks) talk about what Denise had been writing, Gracie came up with the idea of drawing a picture on a Magna Doodle for Denise, then Denise could erase it and draw a picture for Gracie. So Gracie drew a ballet dancer. Denise erased it and drew a fox (Denise & Gracie love the movie "Fox & the Hound"), and wrote "I Love You." So I tote a Magna Doodle back & forth now for the Magna Doodle pen pals. Both seem to have their spirits lifted by having this form of interaction. Denise is drugged up and weak, and still a much better artist that I am.

Xigris stops, 6 liters drawn, Some better, Some worse

Denise finished her 96-hour Xigris drip today, then got a paracentesis which drew 6 liters off of her abdomen... you heard that right... 3 soda bottles worth of fluid. Denise was really tired today but indicated that she felt better after losing that fluid. That draw couldn't be done a couple days earlier while on the Xigris because of fear of complications from bleeding. By the way, the gal doing the procedure was someone that I remember from way back in elementary school.
Denise was doing pretty well on the gastro tube feeding at 40cc/hr until late this morning, when she threw up. Hopefully the lack of 6 liters in the belly will correct the bowel obstructions (that's been an "on-again, off-again" situation) and lessen the vomiting. By the way, for those that like to know, the g-tube is the better one with an umbrella to hold it in place instead of a balloon (I don't have a clue what this is supposed to look like, but that's what I'm told). Speaking of balloon, that fancy expensive fecal containment system was removed today. There was a note stating that it shouldn't be thrown away. Eeew.
Not all blood work was done today since several things are stable, and this saves some jabs for Denise.
Kidneys: The creatinine test is up a little to 2.2. We want it to go down to 1. But I guess this is to be expected with her renal function still so low. Urine output is still *very* low.
Liver: Didn't hear anything today, so I assume that liver function is still very low.
Lungs: Holding their own, respirations in the 20s, concentration still at 40%, still pulling good saturation in her system.
The blood pressure medicine was stopped today, and her blood pressure was about 98-110. Her heart rate was up as high as 130 at times to compensate for it. The challenge for the team now is to try to figure out what to do about this. If they give drugs to lower the heart rate, the blood pressure will also lower, and the liver & kidneys won't be as well supplied with blood. Denise needs the blood perfusion to those organs.

I've been feeling more ground down than usual since yesterday, the stress & chaos isn't bouncing off of me as well, and I think I might be fighting something. Either tha,t or this is what it feels like to turn 35. Anyway, getting sick and staying away from Denise for days isn't an option right now. So I'm trying to take it a little easier at night and get more rest. I didn't go to the hospital after the shift change last night and probably won't go tonight. That eats me up, as I havent' seen Denise much yesterday or today. I'm also feeling the stress of trying to cram a bunch of necessary computer lab projects that I'd intended to do over summer into the crunch time at the beginning of the school year. Fortunately, my ubergeek buddy from Tennessee has been putting in lots of hours to help me at work.

Much better since Saturday

Another day where nothing got worse, most things fairly stable, some things better, some much better! Very cool! She's not is as good a condition as she was before the shut down on Saturday night. But she's improving, and for that we're thankful! Here are the nuts & bolts:

The Xigris seems to be helping Denise fight the sepsis. That' stuff's been a life-saver twice now. We're hoping there will be no complications related to it so that she can benefit from the full regimen of it. It ends about 2pm tomorrow. Kidney function unchanged - still low. But her creatinine is down to 1.7 from 1.9 (we want it to get to 1.0). There's a possiblity that her kidney damage is here to stay and she'll need dialysis for life... or not. To early to tell. But as a buddy put it, dialysis for her life is a fair exchange. Her blood pressure is holding at 103-113 and the blood pressure meds were decreased again (down to 4 mcg/minute). Temperature stayed around 99.8-100 most of the morning, then increased to 101.2 after Ampho B was started... it has a side effect of fever. White cell count is down to 10.4. Again, those two bits of info hopefully indicate that the infections are subsiding. The infectious disease doctor says blood cultures & recent ascites fluid are not growing anything. Chest x-ray is unchanged, oxygen saturation is around 100% on a 40% concentration.
Great news is that her liver enzymes are *dramitically* improved (ALT 79, AST 155... both numbers were many times this earlier). We hope that the liver kicks in and starts working full bore, and real soon.
As far as blood goes, her hemoglobin is 10.2, DIC (that weird bleeding/clotting problem) seems to be improving (as based on a fibrinogen level being essentially normal in the DIC workup). She's got a Swan pulmonary artery catheter (this thing sounds incredible... it's threaded through the chambers of her heart... she had one in the beginning weeks). It shows the pulmonary artery pressure is getting closer to normal, pulse got as low as 106, high as 121... much nicer than those 150s-160s that we were seeing earlier. And her respiration continues to hover around 20 (much better than the 30s-40s that have marked the past two months.
The gastro tube feeding is doing OK so far, after some starts & stops. That would be great if she can continue to tolerate that. We heard that Denise had some vomiting episodes, but the nurse said that there was very little, and she thought it was mostly mucous causing a gag reflex more than anything.

Denise again wrote that she wanted to get into a wheelchair. When told that she has a big ol' Quinton catheter in her femoral artery for dialysis, and that it can't be bent by sitting, she wrote, "What about a walker?" That's my girl. My mother-in-law and my aunt also cut Denise's hair today... with bandage scissors. They don't cut hair as well as what you might find in a salon, nor do my mother-in-law and my aunt.

Correction: In the Monday September 19th entry, I stated that Denise's kidney output was 42-44 ounces per 8 hours. I meant milliliters, not ounces. Big difference. Those of you that are hip to nephrology probably caught my error & knew what I meant. Those of you that aren't probably thought Denise & I were having beer & pretzels or something.

Nothing got worse, Map help

Denise is still very ill, we're still waiting to see what happens. Nothing got worse today, most numbers stayed about the same, some numbers got better. Keep pulling for us. Somebody posted a comment that I loved: " We have no pull of our own for Denise except our persistent tugging, even yanking it seems, on the Master's robe." Yup.

The temp went under 100 tonight, white blood cell count went down to 12.4. These might possibly indicate a subsiding infection (please, please, please). All the same antibiotics are going. Liver function still bad. Kidney function is about the same. She was on dialysis when I left tonight. Blood pressure medicine (Levophed?) was decreased to 9 micrograms/minute (was 50/minute Saturday night), and blood pressure is still holding at 103-115 systolic. Hemoglobin went down to 9.7, so she got another unit of blood tonight. Bowel sounds were good and they restarted her gastro tube feeding this morning at a slow rate. So far she's tolerating it well (yay!).

Denise wrote again that she wanted to get into a wheelchair. My aunt was brushing Denise's hair earlier, and Denise wrote "shave it" or "shove it." Being that both were plausible sentiments, and we couldn't tell which she wanted us to do, we did neither. Other than that, and showing off her leg strength during physical therapy, she was tired & resting most of the day.

Map Help for the Map Helpless
From my cousin (webmaster@stonebrew.com if you need more help)
"I've had a few times where the server is not responding due to the load. It usually comes up within a few seconds after hitting reload.

Here's my instructions on how to use it...
Drag the map back and forth until you have your location centered, then zoom in a little. Repeat this until you've found where you want to place a marker and click (give it a moment). It will popup a little form asking you to leave your name, a message, a link and choose what color marker you want to leave. The link field you can leave blank. You can click satellite mode in the top right if you want to be sure you're marking your house exactly. The hybrid mode is a mix of both views that will show you a satellite view with street names overlaid on the map.

If you're still having problems, let me know and tell me what type of browser you are using. I can add a pin for you if need be."

Guest Map is working... add your "pushpin"

A guest map has just been added to the web site. Look toward the right side of the web page under "Links" and you'll find the link to the map.

Once you're on the map, you can pan & zoom in & out by clicking the buttons near the top left of the map. You can also click & drag the map to move it around instead of using the up/down/left/right buttons on the map.

Using the buttons in the top right corner of the map, you can switch between a map view, satellite photo view, and hybrid view with both.

Depending on your area, you might be able to pick out your rooftop... I did.

To add your "pushpin" marker, just click once on the map. Type your name, a short message, pick a marker color, and then click the "Place" button. There's even a place for you to enter your own web site address if you've got one and want to share it.

**The Paypal link on the map does NOT send money to us or my cousin. It would go to the guy that made this Google-based guest map program (which my cousin then customized it for us). Contribute if you feel lead to do so.

Wait and see... still bad but stable

Things are still pretty bad, but stable. We have to wait & see what's going to happen.
Main points:

Heart: Denise's heart is a big concern. Her ejection fraction (heart output) is still low today (20-25%). She's got some catheter threaded through the chambers of her heart that give us all kinds of measurements. Her PAP (pulmonary artery pressure) is higher than they want but her cardiac index has stayed essentially what it should be for her size & age. A nice thing is that her blood pressure is acceptable while blood pressure meds are decreasing. She's still getting a lot, but not nearly as much as Saturday night. Her heart rate is slowing (got down to 100 while my aunt was rubbing Denises's feet) and oxygen saturation was still at 100%, so that's good.

Bowel not working: Today they put contrast in her gastrostomy tube to check placement and flow - it supposedly looked OK. They are putting meds down it now and are hopefully starting feeding soon (they're trying to avoid the IV feeding). She also has a tube down her nose to take the acid off of her stomach. Her tummy looks pretty big again.

Liver: Her liver also was affected by the shut down this weekend - it's not filtering as it should and her liver enzymes were way up yesterday & today - but today's is 1/2 of yesterday's. So we'd like to see that trend continue.

Kidneys: Yesterday she had 2 liters taken off with dialysis. Dialysis will be decided each day based on her electrolytes and fluid status. Denise is only putting out 42-44 ounces per 8 hours, but we are hopeful if the sepsis is controlled that the renal tissue that was damaged by this weekend's scrape will regenerate.

Thyroid test came back OK.
Lungs holding their own, Denise is able to get 100% oxygen saturation.
Fever only went to 100.8.
She's on Xigris (sepsis), Primaxin, Vfend, Vanco, Ampho B.
Labs show hemo count at 10.6, white cells 17.2, platelets 95, hematocrit 31.5.

We were sort of in the boat a bunch of weeks ago... organs shutting down, things looking scary, Denise on Xigris. The things going for us this time are Denise's ability to tolerate dialysis (that does some of her body's work for her), her ability to breathe more efficiently, even more of you pulling for us, and the knowledge that things were pretty darn bad then, and she was carried through it. Things against us this time are getting weaker after this long fight, different infections in different places, bowel not working... I think I'll stop there.

Today's non-crisis events: At times today Denise would reach out for hugs, especially from the respiratory therapist. She wrote "wheelchair" on a note pad in fairly normal-looking writing (she really wants to get around & maybe go outside). I was more anxious at work today than normal, probably because of Denise's condition. You might be wondering how I could show up at work in times like these. I wondered what I was doing there, too, sometimes. With all the family & friends around, I my heart felt at ease that Denise was getting emotional & spiritual support, on top of medical care that the CCU staff provide. I could worry by Denise's bedside, or worry at work. I thought as long as I'd be worrying, and Denise wasn't alone, I might as well be productive. Work is a short drive from the hospital, so that helped, too. We got a nice bit of lightning & thunder, then a whole bunch of rain tonight (the first of the rainy season). Know why? After not washing my car for 10 weeks, my buddy that came from Tennessee to be my right-hand man gassed up my car & ran it through the car wash yesterday. I think he brought some of the weather with him.

My cousin is working on a world map that we can all put pinpoints into. It's based on Google maps... you can zoom right down to street maps or satellite photos or a hybrid of both. Depending on what area you live in, you might be able to find your rooftop. There'll be a link to it as soon as it's all ready to go live.

Very bad but stable

Denise is very bad off, but stable. There were so many procedures done today, I can't begin to remember remember them all. At one point this morning, the doctor said that her ejection fraction (how much blood can pump out of the heart) is so low that if her heart stopped, he didn't know if it could get going again. This flashed through my head: Last night there was a "code blue" for another patient as I was leaving the CCU. As I walked by, I saw people trying chest compressions on him. I found out later that night that he passed away, in spite of everyone's best efforts (the best effort being the norm in the CCU). I really don't want to leave Denise. But on the other hand, though I'm in no way squeamish, I hope I'm never in a position to see anyone working on Denise like that. Anyway, I told the doctor to do his best if the heart stopped, that we know everyone's been doing everything they can, and Denise is a fighter and she'll do her part to keep going. He & the team have been calling shots in such a way that Denise has come through some pretty bad scrapes already. After having turned the corner in a few ways, I feel like we're back at square one again.
I'm still trying to talk to Denise without cracking, telling her that she's come through a lot so far as a result of the medical team & what's available to them, her strength to fight this, and of course a whole lot of prayer. It's getting really hard to see her condition and find the positives to point out so she doesn't lose heart. I acknowledged that she's scared & admitted that lots of us have been scared sometimes. I've been avoiding it, but finally told her that even if she does die, our faith gives us hope for life beyond our time on earth. I told her that I wasn't strong enough to pick a woman to marry that didn't share the same faith I do; I couldn't stand the thought of life on earth with her being all there is, and when we're both done here, there's still heaven. I hope I didn't stress her, and I hope I didn't say the wrong things. But there was no way I could ignore that she's scared. Now I was a big chicken about all this, talking to her while she was too tired to open her eyes & look at me. By the way, she did move her arms & legs during the procedures, and she has move a little bit late this afternoon. She's opened her eyes a couple times.
Xigris has been started again to try to pull her out of sepsis. There are significant risks involved, as she also has DIC (simplified: bleeding/clotting problems) right now, and the Xigris combined with the bleeding makes for pretty bad news. But the alternative is to let the sepsis continue, shutting down her organs until she dies. So as the doctor put it, it's been nothing but full-court press this whole time, and so it continues. We don't want any bleeding problems to complicate things.
There are so many other things wrong, I can't remember them all. Fortunately, my R.N. aunt that's been explaining most of these things to me is visiting and she's going to talk to the doctors to find out what all's transpired since last night. That'll be in a future post. For that matter, my folks and a bunch of friends have rallied around us late last night & all day today.
Things that have gone positively:
The dialysis went well and lowered the demand on her breathing, so her breathing rate is approaching normal. The fact that she's "well" enough to tolerate dialysis is a good. I assume that since they can perform dialysis, there may not be the problem of her lungs filling with fluid that we had a few weeks ago. Her massive dose of blood pressure medicine was lowered about 40% and her blood pressure was still acceptable. I hope my understanding of that is correct. We'd like to see many more things go in a good direction.

Tonight I told Denise that we didn't need any excitement. I want the nurse to have a nice uneventful evening. Wouldn't that be nice if all the other nurses got jealous of Denise's nurse because there was nothing for her to do but sit & watch Denise get a little bit better tonight?

Grave condition

Pray.
The doctor just called:
He said Denise is in very grave condition. Going back into septic shock, kidneys failing (no urine output), liver function off, high acid in blood, PA catheter going in to heart, another ab fluid draw needed. If she goes to surgery, there's a high mortality risk.

Here's what I typed before the doctor called:
The call that came as I was just finishing last night's post was for bad news. Denise's blood pressure was very low & not coming up. Procedures were performed to get her blood pressure up & stable... a groin catheter was put in and meds given, I'm sure there were other things, but I can't remember the details. The charge nurse that came out to the door to greet me & Denise's mom & dad said that Denise had given everyone quite a scare. The doctor told me that when he first saw her, she was ashen gray and he thought he should do chest compressions, but she was still conscious. He also said that usually they take great care to keep everything sterile. But he didn't have time, so he cleaned her up as best he could and put in the catheter to start the meds. One more life-threatening, time-crucial crisis in which we could easily have lost Denise. Her nurse said he's getting a really high dose of meds and only pulling a pressure of 103, "Cross your fingers," she said. They also took Denise for a CT scan because her tummy is really swelling (checking for blockage again), but as of this morning the CT scan was inconclusive. Denise again expressed that she's scared. So am I.
By 3am Denise was more peaceful & stable, and we left.

VERY low blood pressure

First the downer stuff from today: I just left the hospital tonight and Denise's heart rate did lower to the 112-120 range. But her blood pressure is REALLY low, like 58/37 at one point tonight (about the best I saw today was 82/43). Very scary. The two meds that were administered to lower the heart rate (and increase blood flow) have been discontinued because the blood pressure is way too low. Denise expressed to the nurse tonight that she was scared. She's been saying that more over the past week. I must admit that while I try to be encouraging and point out all the progress and things to be optimistic about, I find it hard to be encouraged by what I'm saying to her sometimes. She got up to 103.9 last night and was about 102 when I left tonight. I heard from the nurse that the infectious disease doctor switched the antibiotic from Primaxin to something else because the pseudomonas infection is resistant to the Primaxin. For those that would ask, I forgot to get the name of the new antibiotic. So there are some pretty scary things going on right now.

Now for the good stuff: I turned 35 today. You might be asking why that's not listed in the "downer" paragraph. But it was really nice. They sent me out of the room to "clean Denise up." When I returned and opened the curtains, Denise had a teddy bear, a balloon boquet, and a couple cards. A bunch of nurses were in the room and everyone wished me a happy birthday. They deflated the cuff on Denise's tracheostomy and she was able to say "Happy birthday" to me. The card from Denise had writing that looked almost normal. The nurses also had a signed card for me. Denise was able to tell the staff to get my favorite pie & ice cream and organized a couple other things. Pretty impressive, I must say. She was fairly alert in the afternoon, which was also nice. Yesterday one of the teachers from work dropped off a goodie bag for me that all the other teachers & students put together. That was really helpful & encouraging to me (thank you all VERY much! I'm overwhelmed!). Today my friend from Tennessee that's visiting me invited a bunch of his friends over to my house (they happen to be my friends, too). So it was sort of a reunion for him, and a birthday party for me (I wasn't there most of the time because I was visiting Denise so much). At one point as the party was winding down, a car caught fire down at the end of my block. According to a witness, a drunk driver caused an accident, drove away, and finally got out of his car on my street as it was burning. Fortunately, it wasn't anyone from the shindig at my place.

I also had a few people go with me to visit Denise today. The support was good. On the way home tonight, one of my friends said that the blog was good for her & her husband. Each entry sparks a conversation about what they'd do if they were in my situation. The book I'm reading had a quote from Nietzsche that said "It is not so much the suffering as the senselessness of it that is unendurable." So hearing how the blog is helping a couple connect adds some sense to what Denise & I are going through right now.

I just got a call from the hospital to go over because Denise's blood pressure's low and not coming up. So here I go. Keep us in your prayers.

Heart function worse than previously thought

Here's the update as of about lunch time today. The official word on Denise's heart is that it's worse than what they thought (ejection fraction is 20-25%, not 30-35%). What she has is commonly referred to as congestive heart failure, most likely brought on by tachycardia (high heart rate for a long time). We're waiting to see how the two drugs they're giving her work. The drugs will slow the heart down, allowing more time for the chambers to fill with blood for the next beat. One drug is usually specifically for hypertension. As applied to the heart problem here, it dialates the blood vessels, making it easier for Denise's heart to pump out against an overall lower pressure. We're waiting to see what the latest thyroid check has to say (might have some bearing on the heart rate). The last thyroid panel came back essentially normal (thank you to family members that contacted me to contribute your thyroid histories). According to an outside-the-hospital opinion, this heart condition should get better once the infections, fevers, and breathing begin to come under better control, since Denise is young and was in great shape prior to going into the hospital.

By the way, have I ever mentioned that this is Denise's first hospital stay in her life? She's packing a lifetime of hospitalization into one long stay.

Fevers crept up to 103 since the last post, so I assume that there's an infection that's either new or getting worse, or one of the antibiotics or antifungals isn't as effective anymore (possibly related to yesterday's decision to switch the antifungal meds). Still waiting to find if the PICC line was a player in any infection. Pseudomonas still present in sputum. To fight the infection, the IV nutrition is either way down or discontinued. The thinking is that the very high sugar in the TPN that's going through the IV tube increases the risk of infection in diabetics (which Denise is dealing with at the moment... most likely temporary). So by cutting the sugar down, the risk of infection goes down, too. At least that's my overly-simplistic understanding. She still probably has a c. dif infection, but that's to be expected until the antibiotics are discontinued. Sounds weird, as I *think* c. dif is a bacteria, and should be whacked by the antibiotics. But then again I've been amazed by lots of things during this whole ordeal. The more I learn, the more I find out how much more there is to learn. Let me restate that... the more I learn, the more I realize how stupid I am.

Her bone marrow seems to be working, as she's still on procrit, and that can only work if the bone marrow's working. This is based on the reticulocyte count (a word I need to research, but my preliminary understanding is that it's basically an adolescent red blood cell, and used as an indicator of marrow function). Now whether her marrow's able to crank out enough cells to deal with her needs as related to infection-fighting and hemoglobin is something that is foggy in my mind.

And my mind is quite foggy right now, as Jacob was awake many times last night. The pediatrician says that he's got gingivostomatitis (sore throat w/white patches), caused by a virus, pretty common. Fortunately, he said virtually all adults have already had this and there's slim chance that I'll get sick, so I can probably still visit Denise. Also, the fever & contagious phase is short, and I got him into the doctor early on, so the meds they gave him should work great. The bad news is that Gracie is probably going to get it, too.
Oh, how I long for the days when if I took a sick day from work, it was because *I* was the one that was sick. Life's real different with kids!

Weak heart, Possible PICC infection, LTAC?

Top of today's news isn't great. Denise had an echochardiogram that showed no signs of infection in her heart, and no fluid around the heart. But it showed that her heart is weak. Her ejection fraction is only 30-35% (normal should be 60-70%). What this means is that her heart is not squeezing out enough volume per beat. This may be attributed to having such a high heart rate for so long. She's getting tired. So they're going to give her some meds (coreg & cardizen... I haven't had time to learn anything about them yet) to slow her heart rate down, thereby hopefully allowing enough time for the valves to fully open/close & get a favorable amount of blood volume flowing. Now since they're going to slow her heart down, that means that they need to get more hemoglobin into her system to accomplish the same amount of oxygen saturation with fewer heartbeats... they've gotta get more bang for the beat. So they're transfusing more blood tonight to get the hemoglobin count up. Other problems might be related to her current heart concern. Might be coronary disease, but not likely. There is an off-chance of a thyroid abnormality, so that'll be checked. There's also a possibility of postpartum cardiomyopathy (simplified, a weak heart muscle). But that's also not likely, since Denise probably wasn't far enough along into the third trimester for this to happen. Still, no stone unturned. I forgot to ask the doctor if this is something that's a new hurdle/crisis, or if it's been there for quite some time, and it's just the next thing to scratch off of the to-do list. Since the doctor has been so great about feeding me all the details regularly, I fear that it's the former.
The infectious disease doctor is planning to change up Denise's antifungal medication (though not showing up for a while, the Valley Fever fungus might still be lurking). The new med will be voricanozole. The reason for the switch is apparently to avoid having Denise build up resistance to the current antifungal med. The fever curve had been lowering over the last few days (at least when I was visiting) but tonight when I left she was at 102.6, which is higher than what I've seen with my own eyes. So the fevers seem to be creeping upward again. That reminds me, just before dinner tonight, there was what appeared to be pus where Denise's PICC line went into her arm. So they removed the PICC line and sent the pus and the tip of the line for culturing. Seems to me the other day, there was the thought that the PICC line might be a player in the blood infection.
The IV feedings and gastro tube feedings are still being adjusted. They're going to try to lower the lipid content of the IV feedings. There's some concern about dehydration, as evidenced by the increasing heart rate... at least that was the thinking this morning, before the echocardiogram. Also this morning, there was talk about getting the possibility of starting to look into a long term acute care (LTAC) facility if she stays stable and things continue to move in a favorable direction. That was also before the echocardiogram, which kind of blew that LTAC idea out the water for the moment. LTAC is something else we're not looking forward to, as none of us like the idea of Denise being gone for months beyond the two months she's already spent in the hospital.

And from the "When It Rains, It Pours" department, my dad started back on chemotherapy yesterday (maybe I should set up a blog for my mom & pop), and Gracie & Jacob are both running fevers tonight. The pediatrician on call (at 10 pm) said that from the sounds of things, Jake might have an ear infection, so we've got an appointment for tomorrow morning and we're praying that I don't have to go to urgent care later tonight.

Not much change, Trach cheating, Party planning

Not much change between today & yesterday as far as fever, heart rate, breathing rate, etc. She was asleep most of the time. She managed to figure out how to cheat the tracheostomy... she pulls the collar to one side and can squeeze out a word or two. She's been writing quite a lot over the last day or two, and most of the time we're able to figure out what she's writing. The few hours a day that she's really awake & alert, her writing almost looks normal. They tried the CPAP mode of ventilation again today, but she didn't tolerate it well. It's been weird... one day she can go for a couple hours, the next day only a couple minutes. Her tummy looks a little more bloated today than yesterday, but that might be because the IV feeding is decreasing and the gastro tube feeding is increasing. There was a vomiting episode earlier, soon after administering some meds.
Denise looked at some party supply catalogs tonight and circled some items for me to get for Gracie's birthday party. One of the people at work took digital pictures from the party supply store for me, and I'll show those pics to Denise tomorrow when she has more energy. By the way, thank you for all the offers to help out with that! I'm overwhelmed & will hopefully get back to a bunch of you this weekend.
I went to wash my hands at the sink and my head knocked some chimes that are hanging from the TV set. Thank you to whoever got that for Denise. And while I'm thanking anonymous gift-givers, thank you to whoever left the daddy & baby sculpture & In-n-Out gift certificates on our front porch last week. And somebody got us a Boston Market gift card with no name. I'm sorry about being so bad about writing thank you notes to people... I like to express appreciation, but I'm dropping the "thank you note" ball quite frequently during this ordeal. Know that I truly appreciate all that's been flowing our way. Maybe I should do a post that's dedicated exclusively to thanking everyone... it'd be a long post!

Online Map?

I thought it would be a kick for Denise to see where all of you are on a map. I'm looking for a web site that has an online U.S. Map (maybe a world map would be needed) that lets each of us put a virtual push-pin (I'm thinking a red dot or something) onto the map where we live, based on city or ZIP code. I've searched but haven't found anything online. Anybody know of a site that offers what I'm looking for? If we can find a site like that, I can link it to Denise's blog. What an encouragement that would be for her to see a map with hundred (thousands?) of red dots all over the place, each one representing the location of someone that's been pulling for her.

Denise speaks, Kids visit

Starting 9 weeks in the hospital, and Denise spoke! I went by to visit Denise after school (it's murder sitting at work after being used to going to the hospital any time). The respiratory therapist (same one that painted Denise's nails) told me they had a surprise for me. So while I was copying numbers off of the machines, they deflated Denise's tracheostomy cuff and I heard Denise talk in a buzzy voice (one or two words at a time, like the kids in the wheelchair from Malcomb in the Middle). I was so shocked that I can't for the life of me remember what she said. But it sure was a welcome sound to hear her voice break into the the click, whir & hiss of the machinery.

I drove home to pick up the kids and drove back to the hospital, and got video of the kids hearing Denise talk for the first time in about 2 months. Gracie snuggled right up to Denise, hoses, wires, tubes and all. Jacob was once again very apprehensive, and at last kissed Denise on the forehead and gave her injections with a toy syringe. I was busy filming, but I think that every nurse, doctor, therapist, orderly, and all the other pajama-wearers that work in the CCU came in for a peek at what was going on. A few people had sweaty eyeballs. A while back, one of the nurses said that after so many weeks of taking care of Denise (and rooting for her), everyone there thinks of Denise as either their sister or their daughter. From what I've seen of the care, Denise is in a pretty good family. Good stuff! A great and welcome contrast to how scared I was last week at the thought of eventually losing Denise to a strain of bacteria for which there was no fix (it's turning out that it was margin of error from the lab & both infections are the same bug, and responding to antibiotic).

Earlier in the day I had gone to the hospital before work and Denise was asleep (not sedated, just "pooped-out-tired" asleep). Her numbers were very nice. Topping it all off, her color was pretty good. So I stayed out of the room so I wouldn't wake her (I have the squeekiest dress shoes in the world). While I was at work, Denise sat at the edge of the bed by herself (physical therapy crew on standby, waiting to dive into action if she fell) and sat in the cardiac chair for roughly two hours. She also had a luxurious shampoo and style (braided ponytail with Denise's super-curly, thick, boingy hair... a miracle!) from one of the nurses whose hobby is hair.

On the technical end, her hemo is at 9.1, they tried her in CPAP vent mode for a while (I believe that lasted about an hour), the infected lungs & blood seem to be responding to the antibiotic. Fever curve is lowering, two days in a row of lower heart & breathing rates with great oxygen saturation. They'll start feeding her a little bit through the gastro tube again. There are still moments that Denise is pale, clammy, and putting numbers on the displays that make me wonder how long this can go on. But that's because she's in critical condition. Some moments today didn't seem that bad for being critical.

Thanks for all the emails & posts offering to help out with Gracie's 4th birthday fiesta. Wow! There are so many emails... I'll start responding in the next day or two. I've got a crew taking photos and collecting party supply catalogs already!

Still waiting, Good signs, Tears, Party planning

I haven't heard any definite word from the infectious disease doctor about our latest scary situation with the infection (remember a few days ago we were encouraged to hear that the two infections are probably the same organism, and if so, there is medicine available). But there are some things happening that might indicate that Denise is whipping the infection(s). Her ab swelling has gone down a bit and it's softer to the touch, her fevers topped in the 102 range & were frequently hovering around 100. Also, white count lowered to 13. I guess that if it gets TOO low, that means that she's incapable of making the white cells. But lowering to the current range might indicate that fewer white cells are needed to fight infections. The doctor said that they were going to look into the possibility that the PICC line might be problematic as far as infection

Overall, it was a fairly uneventful weekend for Denise; more fine-tuning of her treatments. Her hemoglobin count has been low, so she's been given a couple units of blood. They're going to check to see if she's destroying blood cells (hemolizing... the new word I learned today). Fluid in the lungs has increased, but this is due to the IV feeding & doesn't seem to be a big worry at this point. The lovenox blood thinner has been discontinued (hmm... so when they start it up again, does that mean it'll be dishalted or disstopped or disdesisted or disceased?). She's got cuffs on her lower legs that inflate & deflate to keep blood from pooling & clotting now, and she hates them. She was able to get into a cardiac chair for about 3 hours today (sleeping much of the time). At one point today she was sleeping (not sedated) and had some of the nicest stats I've seens in weeks... fever at 99.8, heart rate 112, respiration rate 23, oxygen saturation 100%, using 40% oxygen concentration. But when I when I had to leave her tonight, she was back to sweating, feeling anxious, and having numbers to prove it. In my visit just before the shift change, she had tears dripping from her eyes (haven't seen this much). She indicated that she was scared & frustrated. I couldn't do anything to cheer her up, and I had to leave. That was tough. Real tough.

Today was my first "full" day back at work with the computer classes (my hours have been greatly reduced so I can be available for Denise & the kids). I was very anxious the whole time... I'd gotten used to being able to be at the hospital any time I needed/wanted to be there. Somehow, the CCU crew managed to get Denise through the day without me. First day for the kids in day care, also. We decided to go with a licensed home day care that one of the neighbors on our block runs. Close to home, and Gracie & Jacob don't have to be split up. Plus they'll get home-cooked Filipino food for lunch sometimes (I'm jealous... her pan de sal is legendary).

I was reading a section in "Where Is God When It Hurts" that addresses the way we treat suffering people. One thing that really stuck out at me over the weekend was a statement made by someone that was terminally ill (I guess we all are... one death per person, no ups, no extras), wherein they said that they hated the feeling of not being needed. We all like to think that we matter somewhere along the line; that if we weren't around, something would go wrong, and we'd be missed. It hit me that I could do better than just telling Denise how much she's sorely missed & how things aren't the same with her away from home. Gracie's birthday is coming up in October, and I got the idea of having Denise plan the party, just like she always does... however this time, she'll plan it from the hospital bed. She decided on a fiesta theme. I'm going to visit some party supply stores and take digital pictures of all the appropriate invitations & decorations. Then I'll show the pics to Denise & have her decide what to get. Actually, I don't have time to do this... anyone want to borrow our camera & take the pictures for me? Any suggestions for good and reasonably priced catered Mexican food?

Just one strain?

The infectious disease doctor is pretty sure that both of Denise's infections will turn out to be the same organism, and that it will be responsive to the antibiotics (insert sigh of relief here). He showed me the lab results yesterday for the lung & blood infections, and explained (as best as he could to this numb-skull) the tube result ratios, sensitivity, resistance, intermediate responses, and other goodies (microbiologists out there, please forgive my lack of proper jargon). He feels that that the results are close enough for the supposed resistance of the lung infection culture to be within an acceptable margin of error for the lab.
Good: just one kind of organism to deal with, and there are antibiotics.
Bad: infections in the blood & lung are never good; Denise is very sick.

She's had a nasal gastro tube inserted 3 times over the past few days because of all the vomit. She pulled one out all by herself and the other was removed when she was doing better for a while (then they had to put one in again last night). Speaking of pulling things out, she's on her 3rd PICC line.

Denise reached her arms up to give a nurse a hug the other day, and she said that it made everything up to this point worth it. The other day a nurse told me that I could rub lotion on Denise's back & around her bed sore. I like being involved as much as possible, and it makes me feel like I'm doing something to help Denise out. Anyway, in addition to getting more circulation going to heal that bed sore, they also put on some fake skin stuff and put in a ConvaTec Flexi-Seal Fecal Management System (if only they had an online manual that I could link you to). Denise is the first person they're trying it with. Here's a snippet from the web site:
"Flexi-Seal diverts and contains fecal waste, protecting the patient's skin, to help prevent the risk of skin breakdown and infection from fecal matter. Flexi-Seal Fecal Management System contains a soft silicone catheter assembly. The soft catheter is inserted into the rectum and retained using a low pressure retention balloon."
Funny... they told me that balloons weren't allowed in the CCU.

Blockage, 2 infections... 2/3 good news!

I have news that's not very detailed yet, but 2/3 of it is good. I couldn't wait to fully understand everything before posting. I wanted to let everyone know that some good things happened. Be encouraged, and keep pulling for us!

Good: The blockage seems to have resolved itself (Denise had a bowel movement). There was an ileus, nothing mechanical, perhaps pressure from the ab swelling, some twisting of the intestine... I'm not sure yet.

Good: There are two different types of pseudomonal infections. I'm not sure which specific ones they are, but I hope to find out when I go to the hospital in a few minutes. Anyway, the infection in the blood seems to be responsive to the antibiotics. (Let me hear an "Amen!")

Bad: Unfortunately, the infection in the lung is a resistant pseudomona, and this terrifies me. That said, one of the infectious disease doctors said two things that offered glimmers of hope. Sometimes an antibiotic won't work in the lab, but it will in a person (however it can go the other way, too). Also, there is a "last resort" antibiotic (Polymyxin) that in general is effective against pseudomonas infections. It's not used much because other antibiotics with milder side effects are available. But if they have to use this one, they will.

I should add that yesterday, Denise had a tube inserted down her nose to drain her stomach (parents, try explaining THAT one to your young children!). The nurse thought that Denise was much happier and restful than the previous night (when there was lots of vomiting). Denise's heart rate was much lower (98-117 range mostly), as was her fever (100.x) most of the day yesterday.

I'm off to the hospital now!

LIFE-THREATENING Infection & Blockage

I wish I had something good to say this morning.
We once again find ourselves needing another miracle (two) for Denise & the doctors.

In last night's post, I said that pseudomanas bacteria is back again. They assume that's what it is (what was found was a gram-negative rod... still need to wait for it to grow more). It was originally found in the uterus, ab fluid, and now sputum & blood... it's systemic now. The problem is that it's very resistant to antibiotics. A few weeks ago I mentioned that there was only one antibiotic that could be used. If my understanding is correct, the bacteria has adapted itself to overcome the antibiotic. The choices of what to give her so she doesn't succumb to this infection are pretty slim, and the side effects are severe. We're having to wait to be sure of the exact infection, and wait for the infectious disease doctors to figure out if there's anything that can be done. We've gotta find something to combat this.

More bad news is that yesterday's CT scan of the ab revealed that the barium contrast got into the stomach and small intestine, but didn't go to the large intestine. This, along with Denise's vomiting, points to a blockage. We don't know yet what's causing the blockage. The doctor needs to call a surgeon, but Denise is in very bad condition and not a good candidate for surgery. On a side note, because of the blockage, the doctor thinks that Denise is starting to dehydrate, since the large intestine isn't getting anything from which to extract water. They've stopped the gastro tube feeding and increased the IV feeding to help her out.

Denise has been carried through other scary moments in this ordeal. In my mind, this one ranks among the top, even though there's a wait involved. She has made progress; nurses coming back after a week or so off have commented on how much better she gets. But if nothing can be done for the infection, and the risk of resolving the blockage is too great, we stand the chance of losing Denise. We have to wait for several doctors in different fields to huddle and figure out what to do next.
Pour on the prayer.

Pseudomonas again, Fevers, Heart, Kids visit

We've completed 7 weeks in the hospital, and here we go into week 8. Denise's condition over the last few days has been marked by a return of very high fevers (high as 105.1 tonight), racing heart rates (into the 160s a couple times), increased ab swelling, and today, the return of pseudomonas bacteria, now in the latest blood culture (I believe that previously it was only in a swab performed by the ObGyn). I don't know if I'm more discouraged at her having fevers and not knowing the cause, or finding another infection in another place.

Denise started looking a little better after starting the 5000 calorie per day diet. She nodded when I asked if she felt better & more energetic. She moved her arms & legs a little more than usual to prove it. When alert, she moves easier and with more coordination. She was able to write "I need to shop" fairly legibly. I asked her what she needed to shop for and she held up a part of her gown and made the classic face that says "Eeew, I hate this color & pattern."

The kids came in for a visit on Sunday, I believe. Denise was more alert earlier in the morning, but was on the decline by the time we arrived. This was Gracie's third visit, and she did great, as usual. This was Jake's second visit. He was too sleepy for the first visit, and this time he got scared, cried & screamed. Denise, thought not really able to animate her face much, looked very hurt that Jacob didn't want to come to her. After some soothing and becoming interested in some of Gracie's doctor kit toys, we were able to sit him on the bed next to Denise. Gracie was using her toy stethoscope on Denise, and Jake picked up the cue, using a toy syringe to give her an injection. Eventually, he kissed her hand & our short visit had a happier ending than beginning.

Yesterday Denise must have thought she was at Arcadia Methodist Day Spa, because she got her toenails painted. I think some of the staff have taken her on as their special project. Denise loved the attention. And tonight I left the hospital unusually early, and happened to run into a friend from high school that I'd lost touch with. That was one of those neat moments where if one of us were 5 seconds earlier or later, we would've missed each other.

Let's see... what else? Because of the massive amount of "food," her blood lipid and blood sugars are up now, and that needs to be dealt with. Denise's other chest tube is out now (I wonder if it fell out or if she pulled it out, now that I think about it). So there are no more chest tubes. Doctor says that her vent is on such low pressure, it should be OK. She pulled her PICC line out of her arm today (second time she's done that), and a new one was inserted. There was another CT scan of the ab done tonight. Yesterday we noticed something looking like a boil on her left wrist, and it's warm to the touch, with red around it. With all the infections that she's been dealing with, I'm pretty paranoid and will be keeping an eye on that. I've slept well maybe three or four nights since this ordeal began. A friend let me borrow some Ambien the other day and it worked incredibly well... I got to sleep fast & didn't feel groggy at all when waking up. I asked my doctor for it but instead was given some Temazepam. You should see the long list of side effects for this stuff! Well, I'm giving it a shot anyway. If I don't post for a few more days, somebody come to my house & wake me up.

Thanks a million to my friends, neighbors & family that have supported us in every way. We're getting meals, excursions for the kids, fun sleepovers, yard work, child care, shopping runs, car repair, house work, prayer support... you name it. I'm not feeling the usual amount of self-suffiency that I usually have. I'm blessed, humbled, and feeling incredibly loved because so many of you have offered to help. Those of you that know me personally know that I usually prefer to be on the giving end of service, and feel pretty uncomfy on the receiving end of it. I don't like being a "charity case," I guess. But feeling so obliterated as I have been lately is changing my perception of receiving. I ran into someone at school the other day that reminded me that doing a good turn benefits two parties: the giver and the recipient. If God tells somebody that is willing and able to help, "Hey, go help Phil's family" and I say, "No, you don't have to do that," that really robs someone of the joy of serving. Just one more concept that I've heard & agreed with in my head many times over the years, but living this life right now is really driving the point home in a very real way.

Katrina relief, Denise needs 5000 calories

Katrina relief:
A friend down the street told me about his friend that owns Grand Slam, a local batting cage/laser tag/arcade in Monrovia CA. On Monday (Labor Day) he'll be open 10am - 7pm, and he's donating ALL of that day's proceeds from batting, slam dunking, and laser tagging to hurricane relief. With gas prices being what they are, lots of us are staying local this weekend. Let's help this guy help a lot of other people out. Bring the family. For those of you that know me through Pasadena Christian School, I believe that this is the same Grand Slam that we send kids to during our magazine drive and jog-a-thon fund raisers (if so, they love it).
Click here for the address & more info: Grand Slam

Usually when disaster strikes, Red Cross asks for more blood than usual. Denise is A positive, so that frees up a bunch of you to donate elsewhere. She hasn't needed a transfusion for several days, now that I think about it. So those of you that have been holding off on donating in case Denise needs you, now's a good time to donate to Red Cross or City of Hope (if you're local to us) or some other place that needs it. Free juice & cookies are in it for you.

As far as Denise's progress goes, today was relatively uneventful. The draw of fluid from around that psoas muscle was performed today and turned out to be a pocket of old blood... a hematoma, probably from the Lovenox. She was a little bit more alert today than yesterday. She had a twitch in her upper lip that I hadn't seen before. The resting energy expenditure test was also done and it was determined that Denise is using up about 5000 calories a day. A guy my size needs about 2000 calories a day (well, probably less, now that I'm sitting on my keister most of the time next to a hospital bed). I don't know how they're going to pump that much food into her. I thought of going to Cheesecake Factory, buying a couple cheesecakes, pureeing them, and pouring them through a funnel into Denise's g-tube. Any nurses reading this, I'd buy one for you all to share, leaving it intact, of course.

It occurred to me that Denise has been absent from the house for over six weeks, and I've not in this time gone to Tommy's for one of their chili burgers. See, Denise detests the smell of them, both before and after ingestion, and prefers that I only eat them when she's gone visiting her parents for a weekend. She once asked me to order one of their burgers without the chili (blasphemous... the lady taking the order over the drive-thru speaker said, "Que? Chili no?" and I heard laughing in the background). Anyway, I finally went to Tommy’s today. Scary, but the double cheeseburger, chili fries & shake may have amounted to Denise’s aforementioned required daily caloric intake.

And for the smart alec that asked about my parking by David Hasselhoff the other day:
No, he doesn't still talk to his car.
(I talked to his sister today... she said that she was still in high school while Knight Rider was on TV and she always got teased)

Step back? Gross good news

I've heard that this ordeal can be described as "two steps forward, one step back." We're at a step back, or perhaps a pause. Denise's oxygen concentrations are at 50% (been at 30 for several days), heart rate racing (I'd seen as high as 157), still dealing with fevers. They're not going to push weaning her off of the ventilator. She didn't want to be in the cardiac chair even 15 minutes today, and she was very out of it every time I saw her (not much today, as I had my second day of teacher orientations). Bummer, as I'd been getting used to interacting with her for the past few days. It'd be nice to see her alert, breathing & pulsing more comfortably, and happy more of the time.

It turns out that the indium scan did indeed show some abnormality around the right kidney. But the CT scan showed it to be OK. They did find a small pocket of fluid at a muscle between the thigh & back. Could just be blood. Could be an abcess (unlikely, as it would have lit up with the indium scan). So I signed the form to have her jabbed again (with help from the ultrasound machine so they avoid poking anything they don't want to poke). Let's hope that tomorrow's probe will shed light on why the fevers & ab swelling persist.

They're going to do a "resting energy expenditure" test. It's a test that measures the oxygen going in and the carbon dioxide coming out in order to figure out how many calories she's using. The thought is that maybe she's breaking down protein because she's not getting enough to "eat." They'll also do a thyroid check. I told the doctor that there was no family history of thyroid problems. Then I found out tonight that there are supposed to be some problems on her dad's side. So family that's reading this blog, sound off if there are any thyroid problems so I can clue in Denise's team. They'll also do an endocrine check. No stone unturned, you know.

And now for the gross good news... I know that when Denise wakes up and reads what I'm about to share with all of you, she'll chase me around the house with a rolling pin. But it really is a nice bit of news, considering the effects of the colitis lately.
Denise only pooped once today.
We can all be happy. The nurses today may be the happiest of all.