Tuesday, December 30, 2008

Almost Famous

Last night in the ER I got the first taste of the rarity of a medical emergency like Jason's. The nurses recognized me, those that didn't whispered as I walked past. Sadie's illness was taken very seriously, and all the stops were pulled to make sure she was OK. And I was frequently asked how he was doing now that he was off the ventilator, and if he was more lucid. Today I had complete strangers ask how he was - our local Target pharmacist, a CVS pharmacist last night, and then my primary care physician, whom I had not discussed the case with. It turns out there is a reason why.

The fun continued last night after listening to my home answering machine. The dermatologist Jason saw a couple of weeks ago called to leave the lab tests results. Turns out that there are a "hint of auto antibodies" in one of the cultures. We have yet to work on what that means, but my Google searches yielded insights as to why we were having protein (and thus swelling) issues in the CCU during his intubation. It also may explain why the virus he had ravaged him so much - his immune system is likely out of whack. Now to figure out why.

This morning Jason was released from the hospital, but before I picked him up I told him of the results, and we used speaker phone to notify the attending nurse, who passed the word onto the doctor.

In the mean time, apparently the culture came back positive from the first night - and it shows H Flu. It's pretty rare to contract due to Hib vaccinations. So we're piecing together how he could have gotten it.

In a new Michael Crichton turn (no more ER, think more like "Congo"), I was standing in line at Target after dropping off some prescriptions when my phone rang. I didn't recognize the number, but decided to answer, thinking it may be Jason's work or the hospital. It was the Department of Health.

The gentleman on the other line of the phone was calm and collected as he asked about our family, living conditions, the children's health, my health. He mentioned a possible quarantine and prophylactics, but wanted to gather more information first. As we talked, I found out he'd already received lab reports from the hospital (which had alerted him to the situation), had spoken to our and the children's primary care physicians and knew most of our medical history. He'd talked to our pharmacist and gotten those records. And he knew about Jason's dermatology referral. He was just quizzing me, I guess... he already knew the answers. Creepy. Talk about Big Brother.

State Health guy said he'd call back in a few minutes with directives. When he called back, he wasn't quite so foreboding, but asked how I'd been feeling. He had found out from ER records (which he'd requested and I'd just released) that I had Jason's sputum (which included a lot of blood) all over my face and clothes that day. Not shockingly, it's not a good thing, so they wanted me to get on antibiotics immediately. When I told him that my throat had been hurting with what I thought was sympathy pains or dry air, he told me to immediately go to my primary care provided for a culture and the goods (antibiotics). At my doctor's office I had cultures taken, confirmed a fever of over 101 and he confirmed my throat was cherry red with white patches. I can't tell you how happy this makes me after what we've all been through the past five days.

As far as the girls, it turns out I hadn't been overreacting when I took Sadie to the ER last night. She's on the correct antibiotics, which they gave because they knew it was either a stress or h-flu type of infection (thanks to her daddy's medical records). Katie is headed for the doctor tomorrow, and I'm a bit worried by what I originally thought was a bug bite that now looks much worse on the side of her face. She had strep a little over two weeks ago, and a 10-day course of antibiotics, but they weren't the ones that fight these particularly nasty strains of strep and flu. I'm not OVERLY worried, though, because both girls were away from him during his coughing spasms and stridor, so it's unlikely they were infected. Our extended family has been informed to be vigilant, but it is very unlikely they'd be sick, even those present on the day he was so sick in our home. I had cordoned off the area he was sick in and had sterilized everything the following day, so we're OK on that front. Friends and family who visited in the hospital are fine - they had a HEPA filter going the entire time, and he was no longer infectious by the time he woke up.

So, tonight I'm feeling more like a Michael Chrichton book than the ER mini-series he produces. I'm exhausted and have a fever of about 102. I've been sick the entire time, but just kept going knowing I didn't have another option. I also kind of thought, to be honest, that I was being a bit of a hypochondriac given the terrible things I witnessed with Jason on Christmas day. Several nights I woke up having difficulty swallowing, which I'd attributed to stress.

I'm hoping that by tomorrow Sadie is much better, and I'm on the mend, and that by the first day of 2009 we're over this hump. I know Jason has a bit of a road ahead in determining the true nature of the medical problems that led to his hospitalization, but just to have each one of our health OK for a day would be great.

As an aside, I know I haven't really been writing like my normal self. This whole thing has been a weird, life-changing kind of event, and not just for me. Jason is trying to process what he saw, how he feels, and where he "went" during all of this. It's hard to lose 3 days of your life. I'll leave the details of the events and his emotions for him to tell - if he wants to, to whom he wishes to share it.

I, on the other hand, wonder who this person is coming home. Will he be the same? Will his life change forever? And how do I process all of this, myself? He said and saw some crazy things in there. And he's got a very different outlook on life at the moment. I just wonder if that will last, or change. I don't know how else to describe what I'm feeling now, and it's definitely too deep to bring to the surface yet, let alone write about. I may never talk about it, actually. I just don't know.

Monday, December 29, 2008

On this episode of ER...

Jason is doing well, having "stepped down" from Critical Care to the Cardiac/Pulmonary Unit. His vitals are good, and he's feeling better with each passing minute, making incredible progress at a fast pace. The nurses are amazed.

Meanwhile, down in the ER, most of the show's "regulars" are back in play, with an unusually high volume of patients with a vast variety of maladies. Special Guest Kim Thies (who appeared on last week's episode) makes another appearance, this time with her youngest daughter, Sadie, who presents with many of the symptoms of a rare and deadly disease - the one which everyone is still discussing from the previous week. The nurses drop in to visit with Kim, her sister and the young child, talking about the miraculous intervention the previous week while the child waits to be evaluated.

The young child is sent home after about 4 hours on antibiotics after a series of soft-tissue x-rays and minor probing. A strep A test has yielded negative results, but the child clearly has a strep-like bacteria or virus harboring in the back of her throat... strangely similar to her father's.

On the way out of the hospital, Kim goes by the patient Jason's hotel room with her young daughter in tow, and a tearful reunion ensues.

As the episode concludes, the Kim returns home exhausted and calls Jason in the hospital, dancing around the issues and things that have yet to be discussed. They talk only momentarily about the need to search more deeply for answers to unwrap the medical history. And they make plans for his return home the next day.

In the fade out, Kim is seen typing away in a quiet house, sipping hot tea to soothe her raw, sore throat.

End scene. (and our day)

Coming to...

Today isn't nearly as entertaining as yesterday, but it's not as intense, either. I'm actually taking an afternoon break at home to catch up on some work stuff, file insurance and all the other goodness that comes with an extended hospital stay.

The doctors think Jason can come home very soon, possibly even tomorrow - all his vitals are fine. He's functioning very well, and no longer hallucinating. His motor skills are not there yet, and he's functioning like he's a very smart drunk. For those of you that have seen him drunk, you know he's not a smart one, so that part is kind of weird. :) He's not really up and walking much, but we'll probably try that again this afternoon. Basically, today he's back to himself, annoying me to death about how much longer it will be before he can leave. Every 5 minutes... it's worse than a road trip to DisneyWorld with a 4 year old.

The girls will probably both be back with me tomorrow too. So for the moment I'm enjoying my few moments away from the beeps and sanitizer smells (even if I'm working). Now that the crisis is over, I'm ready to crash for about a week.

Over the Hump

Jason was extubated this morning, and has been doing really well. I've laughed a lot today at his weird comments, imaginary friends and musical references. The day nurse was really concerned about his lack of lucidity, but for once, I haven't been. I just feel that since they were giving him an overload of meds to keep him down that it's being stored longer than normal in his body fat. As the day went on, he got more and more coherent and lucid. He's still forgetting comments made just moments before, but he's also undergone a major trauma and has no recollection after Christmas eve (which is expected and part of the nature of the drugs he was given, and something I'm thankful for right now).

Some of our fun today included wanting to go on a search for a missing Snuffalopogus (who apparently had been in the room with us most of the day). When Jason was asked shortly after being brought out of his sleeping state who I was, he said excitedly "she's THAT lady." He later referred to me as the "one who fell down the mountain on skis that he laughed at and followed" (long story - but it is one that's about a decade old now). He spent quite a bit of time chatting up the IV machine. And at one point he was gazing at/around me, just beaming. I asked him what was going on. He exclaimed it was just so beautiful. I said something like I hadn't even put on makeup or done my hair. He said, "No, not you. That beautiful crystal blue waterfall behind you with the dancing bears." Ummm, yeah. I couldn't make this stuff up if I had to.

In addition to the fun outbursts ("scratching nuts!," "lalalalala" and "grape wash"), lapses into various Duran Duran references (he frequently told me he was "Hungry Like a Wolf" before lapsing into uncontrolled giggles) and singing "Sister Christian," he was also "picking" quite a bit and trying to pull out his oxygen, iv's and such. I was hands-on, all day long, except for a brief respite when some friends came to visit (thanks Cristen, Pam, Steve, Tanya and Seamus - it sooo helped my sanity). I'm exhausted, but in a better way than before. Where I had woken up this morning feeling downhearted and thinking it was going to be possibly another week of CCU (based on what they told me lat night), I'll be getting up tomorrow to the hope that it will be only days before he's out of there. BIG difference from the 3-4 weeks they were projecting previously.

Thanks for all the thoughts, prayers, comments and support. We have the best network of friends and loved ones anyone could ask for.

Saturday, December 27, 2008

I hate ICUs

I hate the smell, the beeps, the droning fans and the life support machines lying around. I hate when the staff start saying "every case is different" followed by "I haven't seen this before." But even more so, I hate when they avoid responses to your questions, or worse, don't tell you of changes. I can see changes. I'm not blind.

Edema is setting in fast - I went home for 2 hrs, and came back to +3 swelling in his extremities. He's had to be suctioned more frequently, and it's thick and bloody. They avoided explanation, until I asked them if what I was seeing was acurate. They agreed (who knows what they are holding back that I don't see). Yeah, I'm officially worried now.

Monday is now the very earliest they will extubate.

Day 3 begins...

I came in to the CCU early (before visiting hours) to try to catch Jason's specialists on their rounds. Luckily I caught both the ENT and the pulmonologist. They had tried to reduce the vent this morning, but there was no air leak, meaning there as no reduction in swelling overnight. They'll try again tomorrow.

His white counts have lowered to 14, so the antibiotics are kicking in. He's on 60 cc of propofol to keep him under (normal is 50 max), but he still woke up when I came in this morning. He wanted to know what was going on and how much longer. Wish I could give him an answer. They gave him adavan and morphine to knock him back out.

I cornered the specialists and drilled them with all my concerns and questions. Jason has been sick with one malady or another since May, including several URIs (including pneumonia)and has frequently complained he could not get full breaths and his chest didn't feel right. The specialists say we have to just focus on getting the swelling down enough to get him extubated before we can I think about what is causing all these things. I'm just glad his white counts are dropping, meaning the antibiotics are kicking in. His chest xray is clear, so that's good too.

So, it's another day of waiting, watching and hoping for a reduction in swelling. I'll post if anything comes up.

Friday, December 26, 2008

Hanging out in the CCU

Jason's still in the CCU, on a ventilator, with steady vitals. The swelling has not begun to go down, which I find worrysome, but we won't know more until we see the ENT specialist again tomorrow. I was there most the day, and he was awake and lucid several times, to our nurses dismay. They let him try to communicate with me while they put in more meds to sedate him (for some reason he doesn't go down as easily as he should). Using gestures and lots of eyebrow action he asked about how the girls were, where he was, what had happened, how long he had been there and how long he would be there. I lied and told him 2-3 days.

It looks like 3-4 weeks, though we hope he is extubated in 48-72 hours (they're adding a day or two, due to the lack of reduction in swelling). He'll remain in an induced coma until they extubate for his own safety.

He looked worse this morning in terms of swelling than last night. They say the reduction of swelling will likely occur from the inside out, so it may look worse than it really is. His white cell count is hovering at 18-19. He's beginning to breathe over the vent even when he's out cold, which is good in his case. And his heart rate is back down in the 80s (yesterday it was in the 140s). So, I think he's over the hump and we're now into the waiting game.

Thank you for all the prayers, well wishes, support, calls and hugs. The kids are doing fine - Katie went to be with her cousin Brittany, and is happy as a clam to have a few days with her. Sadie is sick with a cold, but the fever seems to be over. Mom and Dad are staying with her so I can be at the hospital with Jason. His family has been visiting. For now we have to keep visitors there to a minimum, but once he's off the ventilator we'll be able to have people over to visit. If I don't reply to comments/posts/emails/calls, please know I love you and I appreciate it despite my lack of correspondence. Thanks!


Jason's stable this morning, though he woke last night and sat straight up in bed (not good when you're on a vent!). They've got him knocked back out and resting. His blood pressure and oxygen saturation levels look good, and his pulse is staying steady. The fever is still going, as expected. Visitation doesn't start until 10 am, so I haven't been in to see him yet, but they say the swelling in his neck is about the same.

Thanks for checking in!

Jason's Ok

Thanks to all the friends and family for thoughts and prayers. For those not in the loop, Jason had breathing issues today and landed in the ER this morning. He was later released, only to return a few hours later in worse condition. The diagnosis is epiglottitus, and he was miserable. There were a few scary minutes when they couldn't get him intubated and we were losing him, but luckily they succeeded without having to do an emergency tracheotomy (which was mere inches from taking place). I can't even describe the feelings/emotions/tiredness of the day.

He's in a medically induced coma for the next 48 hours, and the swelling in his throat should receed during that time. They hope to extubate him then, and then he'll be in the hospital at least a week or two recovering. I'll update here when I can.

I got home and did some reading, and just found out it's contagious, so please pray/chant/whatever you do to the higher powers that be that the kids, extended family and I don't come down with it. Especially the kids. This stuff is nasty.

Sunday, December 14, 2008

Love, Love, Love

Sadie has become the meanest little bugger to her sister. She kicks her, pulls her hair and pesters her endlessly. Katie will be sitting, playing quietly, and Sadie will come up and yank her hair, just to see the reaction. We've tried everything to stop it, but it just wouldn't end today. Katie was crying every 10 minutes for another hit, pinch or hair pull. It doesn't help that both girls are still feeling ill and housebound.

At one point Sadie yanked a chunk of hair out, sending Katie into a (very loud) spasm of cries. Jason had enough and went in and pulled Sadie's hair so she'd know how it felt. Sadie erupted in cries - both girls at the top of their lungs. Five minutes later it calmed down, only for Sadie to do it again. I decided to try another tactic.

I told Katie to fight back. If Sadie pulled her hair again (the pain infliction of that moment), she was to pull back - HARD. If she hit, hit back. Bit, bite back. I told her it wasn't the nicest thing to do, but that we needed to teach Sadie that a) it hurts and b) there are consequences (since making her sister cry seems to be more of a benefit then a consequence to Sadie).

Sure enough, a few minutes later they're playing quietly in their room. I hear Katie yowl in pain again and rush to the stairs to listen to what's happening. Katie pulls back, HARD. Sadie cried. I waited. Katie came to the top of the stairs.

"Mommy, I never want to do that again. I don't like to hurt Sadie." Awwwww.

I wish I say my tactic stopped it. It didn't. Sadie started scratching again. Now Katie's got hang ups because she didn't want to hurt her sister and feels bad about it. And the yowling continues...

Tuesday, December 09, 2008

I'm still here!

Just not able to keep up with the blog lately. The last few weeks have been insane - 70 hour work weeks, late nights, sick kids, sick me, etc., etc. Just yesterday we got the tree up, today the lights outside. I haven't even thought about Christmas lists...

But the girls are merry and bright, ready for Santa. Thank God for advent calendars, which helps dilute the number of "how many more days" I get every hour. They keep me chipper despite the blundering economy (that is definitely having an impact on my clients, thus on me). We've been singing carols galore. Sadie's favorite is Jingle Bells, Katie is a classic Here Comes Santa Clause kind of girl. I'm still rooting around for those Christmas CDs I squirrel away every year... I know they're here somewhere!

I'm still looking for a couple of kids to round out our school enrollment. Know of any? Send them my way! We've been working on the different winter holidays, and I have to admit, I've learned a lot about Hanukkah, Kwanzaa and the Advent that I didn't previously know. And I've learned a lot about guinea pig diets. Yes, we have two additions to our classrooms. I now understand why they are called pigs. Sadie loves to hold the fattest one, Peanut, and make him squeal like mad. Vixie is my favorite - she actually cuddles. At least as much as a smelly rodent with a minimal IQ is able to snuggle. Ah, the joys of preschool!

I'll resurface soon with something of interest - for now, enjoy the holiday preparations!