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

On Jamie Schanbaum's Medical Situation

Jamie came into Seton Hospital on November 13th. That morning she thought she was having an asthma attack and luckily Roni (her sister) just happened to call her. Jamie said she didn't have any puffs left in her inhaler and asked Roni to get her another one, but by the time she got back Jamie was blue. They rushed to the hospital where they quickly learned that it wasn't an asthma attack, but something a lot more serious. It took a couple of stressful days in the ICU before we were told she had really contracted meningococcemia.

This is similar to meningitis but instead of infiltrating the brain and spinal cord, this bacteria infected her blood and has a higher fatality rate than meningitis. We were later told by the state health department that 1 in 10 people are a carrier of this particular bacteria which resides in the nose or throat. You can have it and not be affected by it, but something as simple as a cold or a stomach virus can cause this bacteria to work its way into your blood system, which is what happened to Jamie. Jamie's body went into shock rather quickly and all the blood in her body rushed to her vital organs to try and keep her healthy. But part of what this bacteria does is cause damage to her circulation and blood clotting, so when her blood attempted to return to her extremities the damage was done and proper circulation never returned to her hands and feet.

Another aspect of this infection, as I mentioned, are problematic blood clots. She developed irregular splotches all over her body from her blood sporadically clotting. Unfortunately this infection is extremely dangerous. Essentially her blood was poisoned and everything her blood passed through was damaged to some degree, starting with her kidneys. They considered her to be suffering from multiple organ failure. Pretty soon after arriving at the hospital her kidneys failed and she was put on dialysis. Luckily, after two days of dialysis her kidneys began to function properly on their own and they took her off of it.

A day or two later her lungs couldn't keep up with her and Jamie was sedated and put on a ventilator, which is pretty much how she remained for the next 9 to 10 days. She only just had the ventilation tube removed on November 24th, when they decided that her breathing was strong enough for it to be removed. This happened just in time, because had she not started to breathe better on her own they would have put a tracheotomy in her, which is extremely problematic because she was likely to bleed and not coagulate the way normal blood should.

Jamie's blood was, and still is, extremely week and her platelet level was really low. A healthy person's platelet level is anywhere from 150 to 500. Jamie's platelet level was initially at 8. Once the level reaches 7.5, a person becomes high risk for spontaneous bleeding. Over the past 2 weeks, her platelet level has finally started to stabilize itself and is currently at 203, which is GREAT. Her body is finally starting to make a turn for the better. Her vitals are slowly but surely steadying out, with a few hiccups here and there. But we're finally starting to see the light at the end of the tunnel, at least with respect to the fight for Jamie's life.

So, right now (November 25th), we're trying to weigh out our options for the future. The biggest obstacles we're going to face involve the necrosis that has developed in her extremities. Jamie lost blood flow in the tips of her fingers and toes/feet, and although its extremely unlikely that it will return, we remain hopeful. So along with the support that Jamie will require in this extremely trying time, we're also asking for any advice, assistance or even references (as far as vascular reconstruction, prosthetics, skin grafts, or plastic surgery). Any and all help will be invaluable, and if that isn't an option then please keep her in your prayers. Support in any form or fashion is greatly appreciated.