December 4 update (2) - What Dr. Hand Doctor said about Jamie

Well, there's nothing definitive... not that there's ever anything definitive... but what the doctor said is very encouraging... Basically, as I said, we're waiting for a demarcation line to form on Jamie's fingers and feet and he spoke about the demarcation lines in a very favorable way....

... follow me here for a second...

Jamie's finger tips are black... then there's some purpleish/red that goes from the black to the flesh-toned skin on her hand/wrist.... so it goes:

Black (finger tips) >>>> Purple (rest of finger, hand) >>> Flesh (the rest)

With me?

So, he said that the demarcation line looks pretty clear, and that we can pretty well determine where the dead/lost tissue is... and he pointed to the Black/Purple line and not the Purple/Flesh line. That is the difference between losing fingertips and losing hands.

So, not losing hands... probably... that's nice.

That's all I've got for now... we haven't moved into the Intermediate Care (IMC is apparently the abbreviation of choice) room yet and I'm not sure we will tonight. Otherwise, I'm done with my legal work for the day and now I don't have much to do but watch UT/UCLA basketball and get kicked out of Jamie's room for telling her I love her too much...

... that did happen, btw.
-Nick

December 4 update - movin' on up! (eventually), she blisters and moves some more

Short post here.

First, we're in line for the next Intermediate Care room. So, once someone in the IC is well enough to get out of our room, then we'll move on up... pending some cleaning and other shenanigans.

Second, Jamie did physical therapy again today, and it is/was kind of a drag. Jamie is fighting through it as best she can. First, they have her sit at the end of the bed. Then she lifts her calves... then her thighs off the bed... then she raises her arms... then she does some torso-type exercises. It just seems so exhausting.

Also, I saw some wound care type stuff. It was very encouraging to see the amount of blisters on her hands. Btw, blisters are a good thing. They generally mean that the skin is working to flush out the blisters and whatnot. Anyway, Jamie wants to see me, so I'm going back into the ICU. More updates soon enough.
-Nick

December 1 update - Jamie's attitude rocks, we keep chugging along and may move to Intermediate Care soon.

So, as always, I'll start out with the good news. Jamie is likely to enter intermediate care in the next few days. This will basically mean that she gets her own room, gets out of the ICU, and doesn't have the constant attention that she's become used to over the past three weeks (yeah, three weeks on Thursday). Still, don't get your hopes up about what that means. It may just be a bit of nothing, but it may be nice to get change of scenery.

Jamie has been eating and she's been asking her friends and I to read her the last book in the Harry Potter series. She's sort of internalizing the bad news about her hands and feet pretty well. I mean, she greets most people that come in to her room with "So... I have some bad news for you..." She just loves seeing new people too. We get waves of news and recommendations from concerned friends and advisers... we're trying to remain optimistic about Jamie's chances to keep as much of her extremities as possible. Still, there's nothing we can do about this until "demarcation" occurs.... and, to paraphrase Justice Potter Stewart of the Supreme Court said, "you know it when you see it"... he was talking about Porn. [Jacobellis v. Ohio 378 U.S. 184 (1964)]... well, we're all waiting to see it (talking about demarcation, not porn) with Jamie's extremities before making any decisions about how to proceed.

But, I'm back in Austin now and my work has been very supportive about my staying here and working from here. Until we get more closure on her hands and feet, things are going to remain in limbo. The next few weeks, some really shitty decisions are going to be made, and they all suck. I'm glad that Jamie appears to be taking the right attitude about what has happened. Until further notice, we'll be waiting for a miracle... but we'll settle for an improbability or an unlikelihood.

Talk to you more soon.
-Nick

December 1 update - Jamie feels a bunch of pain, eats stuff (without pain)... other things happen...

Today, Jamie made a couple of big strides. First, the biggest change is that she passed her swallow test with flying colors. She moved on to applesauce pretty quickly, and then onto even bigger food... then she barfed. Still, its pretty good to know that her eating functions are still in working order.

Going down the line, her arms are still pretty weak. She has some plastic splints on her hands/arms, even if she would ordinarily be able to lift her arms, she's hindered by the splints. Her hands are way better than they were earlier this week... but I don't want to get anyone's hopes up that the black parts of her thumbs/fingers are looking too much better. We're still watching those parts of her hands closely. A good thing, I guess, is that she's feeling a bunch of pain in her hands and feet. On the one hand, its good to know that she has feeling in her feet and hands... but on the other hand, thats probably where her feet and fingers are dying. Still, we can't do much but wait on that. There will be more updates about this later I'm sure.

Another of today's highlights is that Jamie began physical therapy today. Though I didn't see this happen, I did hear it happen, and I also heard about it. She wasn't moved around too much, but the physical therapist hung her feet off the bed and bent her arms and legs a few times. Jamie also made some kicking motions. Needless to say, she's pretty wiped after all of this and is in a morphine (I think its still Fentanyl, but Jamie was calling for morphine) induced sleep. Oh, right... today they also mentioned that she's now completely off of her morphine (or Fentanyl) drip. She gets pills every now and then (by mouth) and, if she doesn't get the pain killer by pill, then she gets a special little boost in her IV. So, that's good.

We haven't received any confirmation on the extent of the necrosis in her fingers and her feet... and we won't... until we do. That's the sad truth of it.

So, that's where we are. We're talking to a few other medical professionals that have been recommend to us, and many of them are confirming things that we've already been told. As for us, we're trying to get back to some normalcy. I'm going to work from Austin this week, and I'll be back to Fort Worth next Monday (give or take a few). KC is working a ton of shifts over the next six days and she'll be here while I'm gone. Roni will be here too, but she's got a ton of projects to finish before year's end and also has work. Mom is holding strong and tending to Jamie as much as possible (maybe more)... in fact, she may even be reading this (I love you, mom!)... but yeah, we're going to be ok for now. Jamie and the family love visitors during the day too, even if Jamie occasionally misses your visits because she's asleep... Keep the good vibes coming! Time for some sleep.
-Nick

11/30 Update - Moving into the new place, waiting...

The past few days have been pretty busy, though not necessarily on the medical front. We're still largely in the "hurry up and wait" mode with Jamie, and now we're waiting to see clear lines of demarcation on her fingers (this will show the tissue that is still viable and that which isn't). We're speaking to a few folks in Dallas who are more familiar with Jamie's injuries to her hands and feet. We've been quite thankful for the referrals that you've provided us with. If you have any other information, we appreciate it, as always.

The most important news, I guess, is that we spoke with Jamie tonight about her status and the outlook going forward. We told her about her injuries to the fingers/toes, but we tried not to overwhelm her with the sad details. Frankly, we ARE still fighting to save her fingers and toes, but we didn't tell her that we're losing some parts of that battle. We told her about her new house that she'll live at while recovering ("we'll talk about it when I get out of here"). It's an amazing place, and considering that by the time she gets out of the hospital/rehab, she'll have been moved out of her apartment for a few months... well, I think she'll like it.

Oh, that's what we've been doing for the last few days... moving. We moved Jamie and Roni out of their apartments and into the house. We'll post some pictures soon.. and then later, we'll send invitations for the party that we throw to welcome her home.

Anyway, sorry about the delay in posting. I'll be better tomorrow. If anyone has any questions about Jamie or anything, please let me know. Thank you for the support and encouragement.
-Nick

Jamie's Numbers Spike, then Settle - Request for Specialists

Hope everyone had a good Thanksgiving. Thanks to our cousins, we had a wonderful Thanksgiving lunch. It definitely felt like Thanksgiving at a hospital, which is way better than Another Day at a hospital. Thanks also to Marina's mom for making some awesome desert for us.

Anyway, Jamie's numbers (temperature, heart rate, blood pressure, breathing rate, platelet count, white blood cell count, etc.) all look slightly improved. The last few days, her heart rate and blood pressure have been a bit nuts lately, but they're slightly down now. This isn't to say that her numbers are good, they're just better. Her BP is about 148/80 or so and HR is about 145. In the last few days, she's seen her BP get up to 160 and her HR has spiked to 170 in the past. She's been talking and stuff today, but she's still on a substantial amount of pain killers, so she's not always making a lot of sense.

Important - We need some referrals for doctors/specialists that can help us get Jamie the best possible care for her hands and feet. She'll be able to move from the hospital to another hospital soon (or so we think) and we're going to want to bring Jamie before some specialists that can work on saving/repairing as much of her fingers and feet as possible. So, if you know anyone (or know someone that knows someone) that can offer this kind of specific expertise concerning Jamie's hands and feet [in Texas], we'd really appreciate it (!!!!):

- Hands - specifically in the areas of vascular / amputation / prosthetics / skin grafts
- Feet - specifically in the areas of orhtopedics / vascular / amputation / prosthetics
- Rehabilitation - could use some refererences about the best rehab centers in Texas that Jamie can attend in order to rebuild her muscles and get oriented with her prosthetics.

Anyway, we'd like to start contacting people as soon as possible, so whenever you get these recommendations to us, the better. I'm sure the folks here at Seton are great, but for Jamie, we're looking for the best folks possible. Please send your tips. We really appreciate it!!!

OH! I almost forgot! Tomorrow, we're moving Jamie's stuff from her apartment to the new house. If you're in Austin, we'd appreciate a bit of a helping hand getting this done. Also, we'll be moving Roni from her apartment too, so all hands are helpful. There isn't too much heavy stuff at all (probably about 7 items total), so it won't be too big of a committment. If you can help, leave a comment (on the blog or the facebook, and I'll contact you). I'll buy you beer.

Please contact us if you have any questions. Talk to you soon.
-Nick

Wednesday's Update: Jamie is sitting (sometimes singing) and agitated

Hey everyone!

I'll break the latest update down into a few short topics -

1) Jamie was moved today (though she's going to be moved back into her bed later) into a very nice, medical chair. Of course, she is in pain when she's moved. This is the first time that Jamie has been out of the prone position since Thursday, November 13. At this moment (6pm) Jamie is sitting in a chair and mom is laying in her bed, next to her, asleep. This is definitely for the best, for mom and for Jamie (and for the other siblings). Her feet are now slightly below her heart/center of gravity now, and we can hope that this will increase blood flow to her feet. Still, she's in this chair so she her body doesn't start to atrophy. This is the first step to getting her moving again, which, by the way, will happen. She's not going to lose mobility in any of her limbs or anything. The permanent damage may just be limited to her fingertips/thumbs and toes/feet, and we're continuing to be optimistic about minimizing the damages there.

2) Jamie's heart rate spent most of the day being super high, somewhere in the 145-165 range (spiked at 170!). She's been super frustrated lately and agitated about her condition. She's also in a ton of pain, which is being mitigated a bit by her pain killers. Also, she is becoming more aware of the situation related to her fingers and toes. She can probably see her fingers now and they look bad, and amputation of the fingers, up to the first/smallest joint is a near certainty. Because of these new realities for Jamie, she's been a bit flustered lately. So, we've tried limiting her visitors, though we expect that people can visit more regularly on Friday (probably tomorrow, and we'd love visitors on Thanksgiving, but we'll understand if we don't see you).

[Note: We are grateful for the recommendations of doctors that specialize in the hands/feet/plastics/vascular/amputation/prosthetic areas! Please keep them coming! We will explore any possibilities so as to retain as much functionality for Jamie as possible]

3) I should note that her skin is clearing up too. If you hadn't been visiting, the original illness caused a large amount of blood to rise near the surface of her skin, causing discoloration. This is largely going away... so that's good.

4) We are becoming more aware of the difficulties awaiting Jamie once she leaves the ICU. She will be experiencing some wild and understandable emotional swings. We were told this by our favorite nurse, and she told us not to take these things personally and to keep coming at Jamie with support, encouragement and love. In fact, the nurse said that the initial difficulties that Jamie will have to endure, as well as the burdens that this will place on those people supporting her, will be intense (though these hardships will decrease some as her rehabilitation progresses). We've said it once and we'll say it again, some of Jamie's biggest battles are still ahead of her. Once her physical injuries have healed, she will face a long a grueling process of healing herself mentally. Jamie is incredibly strong and wonderful, so we have no doubt that Jamie will meet this challenge head on. We want to make sure the rest of Schanbaum's Army is up to the task. (Yeah, that's you, reading this sentence, right now).

Finally, a note about the siblings and mom. We truly appreciate the support and phone calls, but we don't want anyone to feel bad if we don't return missed calls. In fact, it may be a good idea to call again later, since we're likely to forget in the chaos. Thank you for the support, and we couldn't do it without your help.

There will be another update tomorrow, though if there isn't, it's because I'm at the UT game. Go Horns! 45-35!

Love,
Nick

Jamie Got Extubated - We Rented a House for Jamie and Roni

Good evening everyone!

Here are the updates from the past day or so:
1) Jamie was extubated yesterday, which means that her ventilation and feeding tubes were removed from her mouth. As you can imagine, her throat is all torn up from the tubes being down her throat, so her voice is very scratchy and low, almost to a whisper. As for her breathing, she relies on a much less invasive breathing machine when she sleeps and when she gets tired... though I should add that she doesn't like the new machine at all. She's been communicating with everyone, almost too much. In fact, we'd probably like it if she wouldn't get so worked up when people come around, but what can you do? In this regard, her next small hurdles are (A) passing a certain stomach/eating test, wherein she shows that when she swallows food, it goes down the right tube, (B) getting her breathing back stabilized, with as little help from the ventilator-mask and the other, even less intrusive method they've been using as well. (C) Also, now that she can have visitors and speak with them, she gets a bit worked up, and we'd like it if she could have visitors without becoming agitated or otherwise excited. Still, its a big improvement over where we were a few days ago... if the ventilator needed to be in for more than a few additional days, she'd have had to get her breathing tubes through an incision in her thrachea (its a trachectomy, or tracheotomy or something similar).

2) Now that we're talking about Jamie's increased awareness and consciousness, our next major obstacle is the necrosis (dying tissue, skin) on Jamie's fingers and toes/feet. Overall, this condition is affecting her extremities because of the shock that her body went into upon arriving at the hospital last Thursday. Due to the shock and the condition known as DIC (which clogs small micro-vesicles in the circulatory system) her microscopic blood vessels became clogged with mini-clots and circulation stopped reaching those extremities. Now, weeks later, bloodflow has returned to some portions of her fingers and feet, but not to others. Those are the areas that look black and dying... because they actually are. It appears that blood, warmth and function are not going to return to those parts of her body that look black. These include her fingertips, from her first joint (the smallest knuckle) to her tips, including her thumbs. As for her feet, she has the same necrosis on her toes, but the doctors have alluded to a possible amputation of her foot, in the entirety. The term is a Below the Knee Amputation (or BK Amp, if you're cool). So, we all freaked out about that for a while today, but we're optimistic that her feet, which have good color to them, will continue to warm and recover. That will be something to watch.

3) Finally, we rented a house for Roni and Jamie. It's a 3 bedroom place and is a perfect place for Jamie to recover. It has a big backyard for Jamie to walk around in. It also has a horseshoe throwing pit that will encourage her to be more active. It'll be a great place for people to gather and play with Jamie and Roni and the animals. It is right next to the bus stop too, so she won't have to walk too far to get school. Anyway, Papa Gene, if you're reading this... THANKS!!!!

That's all for now. I'll send another (shorter) update soon. Thanks for the love and support for Jamie.
-Nick