Lynne M. Thomas's Blog, page 34

Caitlin’s Scoliosis Surgery, part 4

We were moved out of the ICU yesterday to the pediatric floor. This was a slight deviation from the usual plan, which would put us in the orthopedics floor. However, Cait’s surgical stuff has done great. The problem has been her heart rate and her breathing. Which means that the pedi folks are better equipped to deal with her than the orthopedics folks at this point.

 

This is her with her epidural out but her drain for her wound still in. Last day in the ICU. We slowly began her feeds, and then there was the Great Poopwatch, which finally happened yesterday, thank goodness. That’s a big step towards her systems getting back to themselves.

Moved to our new digs. Nice view!

We watched the Superbowl last night in our room. Caitlin got a bear.

 

She’s continued with breathing treatments, and we tried 3 separate times to wean her from oxygen support with no success. Her heart rate finally came down today, thank goodness, but she was still on oxygen. We’ve finally determined that it looks like a portion of her right lung had collapsed. It’s slowly reinflating thanks to the breathing treatments. We’re currently trying to wean her from oxygen. Here’s hoping it works. She’s now officially bored of hospital, as are we. 

We are all very much missing our own beds and our cat. The hospital has been excellent in terms of care, but there are only so many nights on a foldout chair that one can handle before longing for our own bed.

If Caitlin is able to come off the oxygen, and her electrolytes remain stable in the next couple of sets of labs, we are hopeful that we’ll get to come home tomorrow.

Again, there is just no way to thank everyone enough for all of the support they’ve provided, in terms of well wishes, gifts, cards, food, and general rooting for all to go well. So thank you. From the bottoms of our hearts. Because you’re helping us stay whole through all of this.

We are also thinking very much of the Tolman family right now, as their daughter Annie, who is of an age with Caitlin and also has Aicardi, just had the same surgery, and they are currently in the hospital after Annie went in with a massive infection that they haven’t found a cause for. We hope that they get some answers and solutions soon.

 

Caitlin’s Scoliosis Surgery, part 3

The past 2 days have been full of ups and downs.

Cait’s heart rate is still more elevated than everyone would like, and her breathing is still on the shallow side, and the “why” of both of those things has still not been sussed out. Not dangerously so (her oxygen saturation has been fine), but we’re still in the ICU as a result. The numbers are slowly coming down, but they are not where we’d like them to be just yet. Which means that we are likely remaining in the ICU until tomorrow.

Cait didn’t sleep very much the night before last, but last night she conked out but good, so we will take that. She’s napping right now, too.  Rest is good. Especially given her busy day yesterday, where she was fitted for a new brace. The fitting involved having her rolled onto her belly for a bit, and she was very, very brave and handled it pretty well. It should arrive later today, and when it does we’re going to try sitting up for a bit, in the hopes of helping to keep draining her and easing her breathing.

Once she’s healed up, she won’t need it anymore. Her brace will then be on the inside. But for now, the brace will help to support her and keep her back from moving in ways that might hurt her while she heals.

Her pain was pretty well controlled yesterday until about 8pm, when she started to moan and whine a bit, and her blood pressure spiked a little for the first time. She did that a few times throughout the night. It wasn’t continuous, and we have an on-demand pain relief button thing that we used that worked okay, but slower than we’d like.  It’s not unusual for the body to begin to build up a tolerance to pain meds, and we think that’s what happened. The pain team has upped her epidural levels a little bit and she’s much more comfortable now.

We are holding up okay. I won’t say that the convertible barcaloungers that we are sleeping on are the MOST comfortable things ever, but we are sleeping, eating, and doing our best to hydrate as well. We are also now at the point where Cait is stable for long enough, and the care team visits are spaced far enough apart, that we are taking little breaks from the room. There’s a family lounge down the hall where we’re eating many of our meals, and we are taking turns going for walks around the hospital to stretch our legs and move a bit. (I remain amazed at how much easier all of this is in the smartphone era.) We have plenty of books, tv, and I brought knitting with me, too. We don’t lack for entertainment, but we are very much at the point where the hard part is having enough brain for a sustained amount of time to make use of it. We are a bit punchy and loopy, but still in good spirits, because we are together.

When Cait had her hip surgery, it was harder because we couldn’t all stay together in the room. When she had her Gtube placed, I commuted back and forth while Michael stayed with her because I still had to work (I hadn’t been at NIU long enough to qualify for medical leave), and that SUCKED ROCKS. But I’m off work, no problem this time, and we are all together, and that makes everything so much easier.

I cannot thank EVERYONE enough for all of the support we’ve gotten. Friends and family and acquaintances and colleagues and people we haven’t seen since high school and college have come out of the woodwork to provide nearly every meal for us, and we appreciate the variety as well as the very brief visits. The big issue is just that Lurie has a visitor ban in place for the whole hospital during flu season. Only immediate family is allowed in patient areas, including the big hospital cafeteria. So when people come to bring us food, we basically can come down to the lobby and visit a little, and that’s about it.

Nonetheless, we do deeply appreciate the friendly faces and the food. And our housesitters who are checking on Marie cat, bringing in mail, and likely doing snow removal in the next couple of days as well. 

We also appreciate all the well wishes we’re getting from friends who are following along but not currently nearby. We may miss out on answering to everything, but it really does help a lot.

We knew we had a great support system; we just didn’t realize quite how big it was. So thank you for confirming our faith in humanity just a little bit more.

 

Caitlin’s Scoliosis Surgery, part 2

Tuesday was a very long day. It started at 4:15 am. It didn’t end until nearly 11pm.

So, she went into surgery around 8am. The first incision was at 9:15 am. We got updates from the operating room around 10, 1, and then 3pm or so.

Once she was wheeled into surgery, we got some breakfast and coffee. The surgical waiting room is not the most comfortable place in the world, although they did provide lockers for our stuff. However, after breakfast, we had a wander and found the quiet room in the family life center on the 12th floor of the hospital, and we were thrilled. Quiet room, comfy chairs, and wifi. We set up camp, and did our best to pass the time.

I was in the middle of A Storm of Swords (from the Song of Ice and Fire series), and it turns out that it is excellent hospital reading. It’s absorbing without requiring massive brain commitment, and, as I noted on twitter, everyone in Westeros is always having a worse day than you. Plus you’re really  grateful for modern medicine.

The family life center had a massage therapist in that day, and one of the workers stuck her head into the quiet room and noted that they’d had a cancellation, and would I like a chair massage? My answer was yes, please! Which helped a bit, as we were both so tired we felt jetlagged.

Michael mostly internetted and read his Jack the Ripper book. We got our periodic reports, had lunch in the hospital cafeteria, and went back to the quiet room.

We finally were told about 3:30pm that they were closing her up, and the surgeon came out to talk to us and tell us that he was pleased. Then it was a wait of nearly 2 hours until we could see Cait. Part of it was getting retinal photos taken (her eye doctor wants those periodically, so they were trying to take advantage of her being under anesthesia already).

We came up to the ICU, and the anaesthesiologist came to talk to us. He let us know that Cait had lost a *lot* of blood. 1.5 x her own blood, and it had stopped coagulating. She nearly bled out. He looked truly rattled because they nearly couldn’t keep up. Her surgeon downplayed it a bit, but he tends to be a bit more of the “well, we sorted it, which is what counts” school. The residents were also a bit unnerved. Everyone was glad that they got the bleeding to stop, but none of them were sure why she was bleeding that much. And that scared them but good.

We learned today from rounds that she had to be resuscitated at some point during the surgery.

We nearly lost her. We are still sorting through the what-ifs and the emotions of that. It’s a strange place, to learn that after the fact, after she’s back here with us.

She’s very swollen (she was face down for 8+ hours) and looks a bit roughed up.

Just after surgery, with tube still in.

Her pain has been very well controlled through all of this, and she was heavily sedated.  Getting settled in the ICU was a parade of people over several hours, so we finally got to sleep around 10:30 pm. We are sleeping on the convertible chairs in the ICU room, which is… less than ideal, but we were so tired it didn’t matter all that much. We awoke at 4 during the next round of checks, etc., and then got up around 6:30 this morning.

So, that was Tuesday.

This morning, they did pressure testing with the breathing tube, and she was taken off of it around noon.

Breathing on her own!

They moved her off of the morphine and the other sedative, and now she’s just on an epidural, which is managing the pain pretty well. She’s alertish, and knows we are here.

Her breathing is a bit shallow, and she’s been running a low-grade fever, but generally she has been in pretty good spirits. They are doing breathing treatments to help her lungs expand more and they seem to be slowly helping. Her fever seems to be headed back down, too.

She’s being moved around/shifted periodically to prevent bedsores and such, and her care team has been absolutely stellar. It’s sometimes hard to parse all of the information because it’s such a steady stream of really kind, compassionate, well-trained and uber-competent people telling you things you need to know, but everyone does their best to make sure we understand, and our needs are met, despite the sleep deprivation and stress. These are the kinds of people that you WANT around your kid when they’ve had surgery, and we are blessed to be surrounded by them.

She is slowly draining all that fluid out, and seems to be headed in the right direction.

I cannot thank EVERYONE enough for all of the love and support we’ve been getting, both in person and online. Truly. It means the world to us, and we’ve been sharing your kind wishes with Caitlin, too. I don’t know if I’ll get around to thanking everyone individually, but please accept our gratitude. We are lucky to have you.

Caitlin’s Scoliosis Surgery, part 1

So, our odyssey began on Monday, when we went into Chicago to do pre-operative bloodwork.

Remember the weather on Monday? -20something including windchill? Schools closed, including NIU? Stay home or there will be COLD DEATH AND DESTRUCTION, for we live in Hoth? Yeah. We traveled in that. It looked like this:

I-88 between DeKalb and Rte 47.

The snow was drifting and blowing quite a bit, just enough to cover up all of the possible black ice. We waited until about lunchtime to leave for Chicago, in the hopes that the weather would be slightly better. *shrug* It was pretty suckily cold and windy, but most people driving were being reasonable drivers and not silly. We got into the hospital without any real problems, and I’m especially glad we did it during the day, because there was apparently a massive accident on the same stretch of road later Monday night, by which time we were safely ensconced at Mary Robinette Kowal’s apartment eating takeout.

Mary is a wonderful hostess, and graciously let us stay at her place so that we were only 15 minutes from the hospital on the day of surgery, which, when you have to be there at 6am, is a BIG deal. As was the scotch, wine, and chocolate she left behind for us, along with her cats. Harriet, in particular, was very solicitous of our well-being.

This is Cait after her bath in antibacterial soap (required by the hospital), just before bedtime.

We tried to go to bed early on Monday night, but I had to get up to stop Cait’s feed at midnight, and we were up at 4:15 am to shower and get ready, pack up, load the car and get to the hospital, so it was a short night’s sleep, to put it mildly.

We got in just after 6, which was fine, and waited for the parade of her care team to begin.

Hospital stays like this turn into a blur of people, all of whom are caring for your kid. We have been blessed with a truly fantastic team at Lurie. Eventually, Cait got changed into her gown for the surgery, which was ENORMOUS but in a fetching color.

Around 8am, they wheeled her into surgery. And we began our long, long wait.

 

SF Squeecast Episode 32 is live!

Episode 32: Every Decade Gets the Mutant It Deserves

Welcome to the January episode of the SF Squeecast! Episode 32 is called “Every Decade Gets the Mutant It Deserves.” This episode features the SF Squeecast regulars Elizabeth Bear, Paul Cornell, Seanan McGuire, Lynne M. Thomas, and Catherynne M. Valente!

This is the first of our NEW FORMAT episodes. This month we all recommend things that should have award consideration.

Our recommendations include (Hugo Award category in parentheses):

Elizabeth Bear:

Gravity Falls  ”The Deep End” (Best Dramatic Presentation- Short Form)

Gravity (Best Dramatic Presentation- Long Form)

Thor: The Dark World (Best Dramatic Presentation- Long Form)

The World’s End (Best Dramatic Presentation- Long Form)

Welcome to Night Vale (Best Dramatic Presentation- Long Form)

The Titanium Physicists (Best Fancast)

Simon Spanton (Best Editor- Long Form)

Beth Meacham (Best Editor- Long Form)

Six-Gun Snow White by Catherynne M. Valente (Best Novella)

Cry Murder! In a Small Voice by Greer Gilman’s (Best Novella)

Necessary Evil by Ian Tregillis  (Best Novel)

The Best of All Possible Worlds by Karen Lord (Best Novel)

Countdown City by Ben H. Winters (Best Novel)

The Mad Scientist’s Daughter by Cassandra Rose Clarke (Best Novel)

Crux by Ramez Naam (Best Novel)

The Coldest Girl in Coldtown by Holly Black (Best Novel)

Seanan McGuire:

Fringe (Best Dramatic Presentation- Short Form)

Warehouse 13 (Best Dramatic Presentation- Short Form)

Frozen (Best Dramatic Presentation- Long Form)

Sheila Gilbert (Best Editor- Long Form)

Equoid by Charlie Stross (Best Novella)

Hook Agonistes by Jay Lake and Seanan McGuire (Best Novella)

Wisp of a Thing by Alex Bledsoe (Best Novel)

Atomic Robo (Best Graphic Story)

Amy Mebberson (Best Fan Artist)

Catherynne M. Valente:

This Is the End (Best Dramatic Presentation- Long Form)

Liz Gorinsky (Best Editor- Long Form)

Liz Szabla (Best Editor- Long Form)

Paul Cornell:

Orphan Black (Best Dramatic Presentation- Short Form)

Arrow (Best Dramatic Presentation- Short Form)

Person of Interest (Best Dramatic Presentation- Short Form)

The Memory Cheats (Best Fancast)

The Writers’ Room (Best Fancast)

Radio Free Skaro (Best Fancast)

Verity! (Best Fancast)

The Impossible Girls (Best Fancast)

Reality Bomb (Best Fancast)

Tea and Jeopardy (Best Fancast)

Coode Street Podcast (Best Fancast)

Obsessed (Best Fancast)

Judy Crisp (Best Editor- Long Form)

Lee Harris (Best Editor- Long Form)

Jeanine Schaefer (Best Editor- Long Form)

Lynne M. Thomas:

Doctor Who “The Day of the Doctor” (Best Dramatic Presentation- Short Form)

An Adventure in Space in Time (Best Dramatic Presentation- Short Form)

The Five(ish) Doctors Reboot (Best Dramatic Presentation- Short Form)

Adventure Time (Best Dramatic Presentation- Short Form)

Sleepy Hollow (Best Dramatic Presentation- Short Form)

Pacific Rim (Best Dramatic Presentation- Long Form)

Galactic Suburbia (Best Fancast)

The Traditional by Maria Dahvana Headley (Best Short Story)

Selkie Stories Are for Losers by Sofia Samatar (Best Short Story)

Saga (Volume 2) by Brian K. Vaughan and Fiona Staples (Best Graphic Story)

The Girl Who Loved Doctor Who by Paul Cornell and Jimmy Broxton (Best Graphic Story)

Queers Dig Time Lords edited by Sigrid Ellis and Michael Damian Thomas (Best Related Work)

Katy Shuttleworth (Best Fan Artist)

Click here to listen, press play below, or right-click to download the episode (mp3).

 

 

Additional credits: Special thanks to our webmaster, Dmitri Zagidulin, our technical producer David McHone-Chase, Jeff Bohnhoff at Mystic Fig Studios for the instrumentals of music by Seanan McGuire, Katy Shuttleworth, who made our ROCKING logo, and Michael Damian Thomas for general administrative support.

 

Caitlin’s last day at school (cross-posted from Michael)

Michael posted an update that I’m sharing:

Today is Caitlin’s last day of school before the spinal fusion surgery. By the time Caitlin goes back to school in 7 weeks or so, it will be springtime and warm. Today it felt like -23 F as we put her on the bus.

I believe the kids at school will be doing fun things for her today. Some of her friends are also taking her to see Frozen this weekend.

I can’t tell you how much it means to us that Caitlin has friends at school. Since Lynne and I grew up at a time when kids with disabilities were hidden and separated from the other children, we weren’t sure that the other kids would ever accept her. Instead, Caitlin has a clique who invites her to parties, reads to her nearly every day, and covers the armrest of her wheelchair with Rainbow Loom rubber band bracelets. She has her own life, just as it should be.

One plus about her not going to school is that it will give Waste Management and the district some time to fix the landfill mess. The IEPA determined that Waste Management broke state law. We’ll see what the school district does next.

At this point, we’ve done pretty much everything we need to do before going to the hospital. Caitlin’s pre-op pediatrician appointment went well. Caitlin is as healthy as possible. Other than some tense driving due to snow, it was an uneventful visit.

I will double-check paperwork today, but we’re pretty much down to cleaning and packing.

In case you are curious, Caitlin’s Aicardi syndrome sister Annie went through the surgery last month. Her mom has been keeping a detailed blog about the entire experience.

You can also watch a video of this type of surgery here.

Thank you again for your support this week and offers of support over the next few weeks. We really couldn’t get through this without our friends.

Photos from Chicago TARDIS!

So we finally got electronic versions of our awesome official photos with Doctor Who media guests from Chicago TARDIS. (Thank you, Chicago TARDIS photography staff). BEHOLD THEIR DOCTOR WHO GLORY.

The Three Doctors! And us!

 

 

The Three Doctors! Episode 2.

 

Us with Freema Agyeman!

 

Us with a TARDIS full of companions!

I know this is one of those things that many people find a bit… weird. Taking photos with actors from your favorite TV series. But you know, I just don’t care. It’s lovely to have a couple of minutes to chat with them, and Caitlin REALLY enjoys it. So that’s good enough for me.

Because any time you get three Doctors in a picture, it’s gonna be cool.

 

Verity! Extra: We Choo- Choo- Choose Who!

Welcome to what’s probably the silliest Verity! Extra! to date. Join Deb, Erika, Katrina, and Liz as we answer a listener question: Which Doctor would you most like to travel with, and why? We also expand on this to cover who we’d least like to travel with, which companions we’d like to join, and which incarnation of the Master we’d tag along with. It’s a barrel of laughs and then some (for us, anyway–hope it is for you too)!

^E

Download or listen now (runtime 29:41)

 

 

What You Can Do to Help with Caitlin’s Surgery

Many people have asked us what they can do to help during the surgery and recovery. We tend to not ask for much, but we realize that friends and family often feel like they need to do something. (And yes, the support helps a lot.)

Here’s what you can do:

1- Just remain your awesome, supportive selves. Kindness and compassion go a long way. We love Internet hugs!

2- You can visit us at Lurie Children’s Hospital of Chicago. We would rather not have visitors on Tuesday while Caitlin is having surgery, but everybody is welcome after that. We should be there 5-7 days.

We would especially appreciate meals. Lynne and I will both be there, and the cafeteria is meh.

Please let us know if you’re coming.

3- We would LOVE visitors to our house. We will be pretty much stuck at home for 6 weeks or so as Caitlin recovers. Friends stopping by is greatly appreciated. Once again, we also won’t say no to food. I’m back to work after the first 2 weeks, so socialization, especially during the week when Michael is running solo, is greatly appreciated!

4- Caitlin loves cards if you would like to send one. She doesn’t need anything, but she has an Amazon wish list if you feel like buying her a little something.

Thank you again for all of the support and love.

8 Days Until Caitlin’s Surgery

[Cross posted from Michael's blog]

We are starting to get a little stressed out.

We have 8 days until Caitlin’s spinal fusion surgery. So far, all of the pre-op doctors’ visits have been okay. The pulmonologist cleared Caitlin for surgery. (Yay healthy lungs!) We have one more appointment with the pediatrician on Wednesday, and then her final blood work on Monday.

The only weirdness was the SURPRISE ER visit last week after Caitlin and her entire elementary school were exposed to a gas leak from the landfill next door. It was an extremely scary day, and there are still many unanswered questions about what the kids were exposed to, how it happened, and how the school responded after assurances in 2010 that they had an emergency plan for such things. (Here are the newspaper articles.) At the hospital, it was determined that Caitlin and the kids had been exposed to low levels of carbon monoxide, but the levels in her blood were still in the safe range. She HATED the oxygen mask.

In other news, a colleague/friend of Lynne’s held a fundraiser with her Girl Scout troop at a pizza place for Caitlin. It was quite wonderful. They wanted to do something for Caitlin before her surgery, and decided that the best thing they could do was get Caitlin her first iPad. It was a smashing success.

We really couldn’t do all of this without our family and friends.