Not-So-Random Thoughts

Dustin went to visit Sam yesterday with Thor, Trystan and Destiny with plans to play Talisman (old D&D board game that he used to play as a kid). While there, Sam was able to move his thumbs! Several times!!

In addition, the muscle spasms that Sam's been having that have been rather freaking out the doctors to the point of them (for a second fucking goddamned time) starting a medication that I have told them is ~not~ okay (it's called Baclafen sp? and is used to make the spasms stop in addition to a myriad of lovely side effects including hallucinating when you're weaned off it ~ I got that stopped right quickly, luckily this time before they'd started administering it, it had only been ordered) he can now bring them under control after they start and make them stop! It's the most fantastic news to date!! I'm so excited for him and so thrilled to know that by the end of this week we will have a firm discharge date so I can really get things moving to get him home!

I can't wait to have my boy back at home and away from the hospital where all they seem to be concerned with is making sure he's comfortable. They don't seem to care one whit about him recovering. They don't seem to care if he's on a ventilator for the rest of his life, they actually think that he will be. Well to that, I say fuck them. They are wrong. They don't know my boy.

So this past Wednesday (October 1) Sam had his halo removed! Soo very happy about that! I will be doing my final bit of RT training this upcoming Wednesday (taking Sam out of his room "portable" ~ which means Sam in his wheelchair with no extra trailing bits of equipment, everything will be stored on his chair). Once I am signed off on that, we will be able to schedule his discharge date! About damn time.

Yesterday was a big day in that I got to give Sam a bath. Oh sweet gods...he needed one. It's going to take several to get down to the skin (the vest part of his halo made it impossible to wash him adequately so there's a lot of built up dead skin that needs to be sloughed away). I will be working on that over the next few days, which means also that we'll be figuring out the best way to get him to the bath and in and out of it. It's a tricky thing with him still being on the ventilator and needing constant support throughout the entire process. Next thing is giving him the haircut he wants (he likes his hair short!) and scrubbing his head (which is in much the same state as his chest and back).

Sam has consistent feeling to his fingertips on both hands now, and intermittent feeling on both feet! It feels like it's been forever, but when I stop and think, it's still really only been 3 months, which is nothing. He's so strong and I'm so proud of him. He's terribly excited about coming home and I can't wait to get him here.

(borrowed from dwights)

* Grab the nearest book.
* Open the book to page 56.
* Find the fifth sentence.
* Post the text of the next two to five sentences in your journal along with these instructions.
* Don't dig for your favorite book, the cool book, or the intellectual one: pick the CLOSEST.

Stormed Fortress by Janny Wurts

Turned his raised head, aware who approached well before the arrival emerged from the underground corridor. He arose with respect. Flawless in courtesy, he offered a seat on the folded blanket that had lately served as his bed. No fool, he did not make the outsider's mistake and try to lend an elder assistance.

Yar har! I be off to a lively time o' debauchery and fillin' m'chest with booty!

(I'm off to work Banner War this weekend and it will hopefully not be the wet and muddy mess of last year.)

Been getting lots of requests for updates on how Sam is doing. So here ya go, with picture!

Sam is back under the care of the Pulmonary team, although he gets to stay in his room on the Rehab unit which is nice because he very much likes the nurses there. He has feeling all the way to his fingers on both hands as of a few days ago! Sam's gotten really good at timing the ventilator so he can talk when he puts his mind to it. =) So great to hear his voice! The halo is scheduled to come off around the 26th, we're all super excited for that!

As soon as I've finished my training on his ventilator the doctors will be able to set a discharge date, so we're busily working on getting the house ready for Sam to come home. The doctors have said that he will definitely be home by Thanksgiving, but we're working on getting him home sooner than that.

His spirits are high and he's beginning to behave like a regular kid again: being silly, cracking jokes, laughing! Sam really misses being home, and having visitors helps so much. We've really appreciated everyone who's been able to stop by and spend some time with him.

My darling boy has been on the Rehab Unit for 10 days now and is making so much progress and his spirits are so high, it's just amazing to witness!

He has Occupational, Physical and Speech therapy twice each day, a morning and an afternoon session of each. He's working so hard that he's finally actually sleeping normally again! He's been getting up out of bed every day this past week into his new wheelchair and has gone outside in both rain and sun, visited the playroom and gone to see the swimming pool too =) He's loving his newfound mobility and has been spending more time out of bed during the day than in it.

He met the goal of finally having the cuff on his trach tube completely deflated during speech therapy. And is now up to 9 minutes of deflation. The goal now will be to increase the amount of time the cuff is deflated until he can tolerate it constantly. At which point he will be switched over to a cuffless trach tube. It's really the first step to weaning him off the ventilator. In case I haven't mentioned previously, deflating the cuff on the trach tube is what allows Sam to regain the use of his voice (allowing air to flow across his vocal chords). His speech therapist discovered that giving Sam something interesting to read ~ in his case, she's been printing out stuff on dragons! ~ he doesn't pay attention to the clock and focuses just on reading aloud and is making huge leaps forward.

Sam is eating solid food every day now! At each meal! It's only a few bites per meal at this point, but it's better to take it slow and easy and work his stomach back up to tolerating digesting solids again. The eating is one of the more difficult tasks for Sam because his stomach has been so touchy with all the changes they've put him through trying to get him the calories he needs daily. He hasn't really felt hungry, but with both me and his dad reminding him that eating real food is so much better for him than being fed continuously through a tube he pushes forward (even if he does complain he still eats something).

Every day has been working toward some form of progress or improvement over the previous day, and Sam has been meeting those goals and exceeding them and amazing everyone who works with him =) The biggest achievement so far happened on Thursday morning ~ Sam can shrug his shoulders! He was so proud of himself. He was showing off to everyone who came to see him =) Big ol' smile plastered across his face!

Thank you all so much for the good thoughts/prayers/wishes/hopes you've been sending to Sam and my family. There is nothing that would ever be enough to repay that in my mind.

Sam was moved out of the ICU on July 31 and has been in the primary care of the Respiratory team whose goal has been to stabilize him on the ventilator in preparation for moving to the Rehab unit.

After getting cleared to eat just about anything he wanted he overdid things a little bit  last Wednesday and his tummy got mad at him and rebelled. So he's been pretty leery of eating anything since. Up until this Tuesday evening: I talked him into a bite of my chicken. That was all he wanted. Wednesday evening his dinner tray arrived and it was chicken and green beans, after getting some salt and pepper to season the chicken and green beans he took one bite of the chicken, three bites of the green beans and one bite of my nectarine! I was so proud of him and he had the biggest smile on his face. We're focusing on taking it nice and slow so there won't be any more tummy upsets this time around.

Other new stuff ~ Speech Therapy has started coming every day in the early afternoon to work with Sam on getting him talking again. In order to do that they have to deflate the cuff on his trach tube. Sam doesn't like it very much because it feels really weird to have air flow that he isn't in control of coming up into his mouth and leaking out around his trach tube. So we compromised by deflating is halfway. Tuesday he had the cuff deflated for 30 seconds. While the cuff was down Sam named the four seasons twice through and at the tail end of the time he was beginning to hear his voice! Wednesday he had the cuff deflated for a full minute and probably would have kept going if someone hadn't mentioned that the minute was up! During that session Sam read the names of the cards from a set of "Don't Bug Me" cards.

Sam had his last IV site removed on Tuesday. On Wednesday Occupational Therapy came and made him a splint for his right hand that will help keep his fingers from curling up. As soon as the splint the Orthopedic team put on his broken wrist comes off in another week he will get a similar splint made for that hand too.

Occupational and Physical Therapy come by every day to work on Sam's range of motion of all his extremities and get him up in a chair for a few hours. The muscle twitch/reflex movement in his limbs is almost constant now, to the point of being extremely uncomfortable, so we're discussing with the Rehab doctors how to make that a bit more comfortable for him. With the halo on, every time his muscles in his body twitch his neck also tenses and he can't move his neck to alleviate that strain.

Sam is scheduled to move to the Rehab unit on Monday as long as there is a room available. The doctors have told us that they'll try to get Sam a private room which is an exciting prospect for Sam as I've asked the staff and they've told me that we can probably have a sleepover with Thor and Trystan if he does get a private room! As soon as we know his new location we'll pass that information along.

Much love to all!

So today was long...started out with Sam's bedside swallow study. It didn't happen yesterday because I was out of the room eating breakfast and showering when they came to do it and Sam wouldn't have any part of it if I wasn't there with him. So this morning, we set the bed up in the chair position so he could eat. He doesn't care for chocolate and to do the bedside swallow study they have to use dark-coloured foods (like chocolate pudding, chocolate milk, grape juice, etc.) They deflated the cuff on his trach tube (which allows air to flow both ways around the trach tube) and the air leak made a kind of odd noise that Sam didn't like so he began balking at doing anything. I got him to take at least a few bites of the pudding and a few drinks of the chocolate milk, enough anyhow that the speech therapist okayed him for the fluoroscopic swallow study this afternoon.

In order to get him to agree to even go to the follow-up study, we agreed to leave the trach cuff inflated. It means that at some point in the near future (next couple/few weeks) we will have to go do another fluoro swallow study with the cuff deflated, but that's okay. I went over the list of things that they might offer him to try eating at the study, pudding, flavoured milk, cookies, rice krispie treats, chips...Sam says "Why all the junk food? I'm trying to be healthy. I want healthy food." Ha!! My son, the health nut! All the nurses got a kick out of him. They had to mix a barium liquid in with everything that he hated (tastes nasty, so I don't blame him) but he soldiered through and ate some applesauce, vanilla pudding, apple chunks, and some strawberry milk! Every time he took a bite they would turn on the x-ray machine so they could watch him swallow. They pulled the monitor around so Sam could watch himself on-screen! He thought that was pretty cool, he kept sticking his tongue out and then he burped on camera! Silly kid, the staff couldn't stop laughing

So he's now cleared for almost anything he wants, just not "thin liquids." He can have liquids (like water or juice) they just have to be slightly thickened. We put in a request for hard boiled eggs and orange juice for breakfast for him tomorrow!

Sam is becoming a sassypants again!! He's getting bored with watching movies and is wanting more visitors and more things to do! This is all good stuff!  He's feeling pain in places below his chin (since the 15th it has been sensation in his right shoulder during range of motion physical therapy) and having a lot of reflex/muscle twitch movement throughout his entire body! They're small signs, but good. Also the Physical Therapist did a neural test on him to check for responsiveness (testing his ability to contract his anal sphincter) and he was able to squeeze quite hard on command twice!

Occupational therapy and rehab are starting to get more involved in his care now so he is going to start getting a lot more visitors (clowns, dogs, people who will come and read to him, play live music for him, etc.) and as soon as he is feeling up to it, we will be able to get him up in a wheelchair and take him for walks outside!

Sam had his tracheotomy and g-tube placement surgery this past Monday afternoon. Once he woke up that evening he was all smiles and sass. He won't have the feeding tube in his nose removed until this coming Monday (they want to give the stomach tube time to heal before they begin using it) but having the breathing tube removed from his mouth was a huge gain in Sam's opinion! He's been practicing talking ~with~ the ventilator so he can actually make some sound. It's still a bare whisper but it's so much more than he was capable of just a few days ago.

Tuesday he asked me "Mom, when do you think I can eat solid food again? It's been weeks since I've eaten! Do you think I can have an apple? A big, juicy apple!" Then he proceeded to close his eyes halfway and lick his lips with a big grin pasted across his face! He's scheduled for a swallow study next Monday with a followup dye/x-ray swallow study for Tuesday. If those show him swallowing and not aspirating anything then he'll be OK'd to start back on solids slowly.

The past couple days have seen Sam spending most of his time sleeping, which is fantastic because he hasn't slept more than 2-4 hours at a stretch since the fall. I will be back down at the hospital as of this afternoon until next Tuesday evening, but I'll try to get online at least once or twice in the interim.

Sunday, July 6, Sam was transferred from Harborview to Children's Hospital. He was determined to be stable enough to be moved and the ambulance was available so after spending the morning getting all the paperwork together he was moved in the early afternoon. The staff at Children's has been absolutely fantastic for the most part, very communicative and always available to take the time to pause and explain fully what they're doing, why they're doing it and what all the machines and readouts mean.

This past Tuesday evening, July 8, Sam had a pacemaker placed. Between Monday and Tuesday his heart stopped five times. Four of those caused loss of consciousness and required chest compressions to get his heart restarted. He also needed to have his left lung re-inflated as it had collapsed completely during the course of the day Tuesday. We were very lucky in that everything and everyone necessary to have the surgery happen immediately was available right then. Sam is healing quickly from that surgery.

Yesterday Sam spent a good portion of his day sleeping after working on improving his lung strength on Wednesday. Yesterday also saw Sam give us a great Huzzah!! moment when he moved his feet in his sleep and then later in the day moved his right leg. Both were "non-reflex" in that they weren't twitch muscle movements in response to outside stimuli.

We're currently waiting on the coordination of the ENT and GI departments so we can get his tracheostomy and g-tube surgery scheduled. That will probably not happen until next week. I know that having both those appliances placed will improve his morale significantly as the only place he can feel 100% of the time is on his head/face and having a tube up his nose and in his mouth for food and breathing is a huge irritation to him (especially as it severely impacts his ability to communicate ~ that boy loves to talk!)

sqtristan is currently with him at the hospital while I'm back up at the farm getting things done that need my attention. As always, all of your good thoughts, energies, prayers are completely appreciated. They're doing Sam an enormous amount of good!

Love you all.
~Jeni

Sam is feeling much better today. He's more comfortable than he was yesterday and has gotten some rest. His roomate is 8 weeks old and a bit of a noisemaker =) But he did finally stop crying for a few hours earlier today and both Sam and I took the opportunity to catch a nap! 

Sam hasn't needed any pain meds so far today and is sitting up watching My Neighbour Totoro right now. After the movie, Kyle is going to read chapter four of The Battle of the Labyrinth. Once again the settings on his ventilator have been readjusted and he's feeling more comfortable with his breathing. The Respiratory Therapist said that he's initiating the breaths (which on this new machine we can actually see as they're colour-coded by whether or not it's Sam or the machine that initiates) just not quite enough to support him completely. But it's a good start!

If you or anyone you know is looking for a good cause to donate to, we have an account set up for Sam with US Bank, so all anyone has to do is go into a branch and ask to make a deposit to the account of Samuel Thomason. sqtristanalso set up a PayPal account for Sam ~ helphealsam@gmail.com, just log into PayPal and hit the "Send Money" tab and put in that email account.

More than anything, the well wishes and prayers of everyone are hugely appreciated. They are doing an amazing amount of good for us out here!

Love you all.

~Jeni

I have a moment to finally access the internet.

If at all possible, I need something from all of you ~ your thoughts, prayers, blessings, any form of good energy that you are able to send for my eldest son, Sam. (He's 10 years old.)

On July 2, at about 7:30pm he fell out of his second story bedroom window onto the dirt below (luckily missing both the large rocks and the jutting tree stump to either side). He fractured his c1 and c2 vertebrae as well as both the ulna and radius of his left arm. His 8 year old brother was outside and saw him fall. (Apparently Sam was calling down to Tae who was in the kitchen making dinner to find out what she wanted him to do chore-wise before dinner, lost his balance and fell out the window.) Trystan yelled for Tae to come outside, she immediately came and got me. When I got to Sam, I told her to go get Dustin ~now~. Sam was lying on his right side and looked up at me, spitting blood, and told me he couldn't move and that he couldn't breathe. His breathing was laboured so I gently rolled him onto his back to give him a clear airway. He was completely limp. He kept trying to talk to me, but quickly went into shock and then stopped breathing. I checked for a pulse and couldn't find it. I started CPR and almost immediately got him breathing again. He did this three times before the paramedics arrived. It seemed to me to take forever (although I know it was mere minutes). 

Sam was intubated on-site and loaded up in the ambulance. I rode with him to the airport where he was airlifted to Harborview Medical Center. Our neighbour drove me down to Seattle and I've been with Sam almost continuously since. (I took a short break while he was in surgery on Friday, the Fourth to recharge and wash my clothes.) Sam had surgery at 9am on the 4th to fuse his c1-c3 vertebrae to the base of his skull with a combination of a bone graft from his pelvis and ceramic plates and screws. He is also sporting a halo to stabilize his neck and restrict any movement whatsoever. He's communicating via blinks (2 or more for yes, 1 for no) right now. 

Sam was transferred to Children's Hospital (still in Seattle) yesterday afternoon. He's still in the ICU, but hopefully his stay there will be a short one before getting moved to the Rehab unit. Currently we're waiting on him to stabilize a bit (he woke this morning running a fever, so they're having an array of tests done to see what's happening.) Once he's stabilized he will be getting a tracheostomy and a g-tube (a feeding tube directly through the stomach wall) to clear his mouth so commuication will be much easier.

I won't have much time to get up to access the internet (this has been the first time since last Wednesday evening) but if you want to contact me, I have my cell phone and will be checking messages periodically. If there is anything more you want to do, or if you want more infomation please email sqtristan, Sam's dad, at daddytristan@gmail.com.

I know you'll all want to know how I'm doing ~ I'm holding up rather well all things considered. Kyle has been absolutely amazing. He's taking wonderful care of me, making sure I eat and rest and delegate what I can. 

My love and thanks to all of you.

~Jeni

Get Your Sexy Name

But, by golly, I have a wall! And a door! Its looks are utterly salvage-yard, but hey, it all works as intended and that's really the important part, yes? All I need to finish it (for the moment anyhow) is a doorknob. I'll have to actually spend money on that part but it shouldn't cost too much. I was really rather thrilled to be out digging through crap in the barn and discover a door with hinges (non-rusty even!) still attached. Not to mention just enough tallish bits of plywood so that I only had to use roughly a dozen of the short two-foot boards. So half of the wall is only about three and a half feet tall, but that's remedied with re-hanging the tapestry (which I no longer need to worry about getting shredded to strips by the dogs). It's been entirely a day full of Yay!

Oh! The kids and I also baked cookies. Not just any cookies, but oatmeal cookies filled with dark chocolate chips, golden raisins and dried currants! Yumminess made tangible.

Tomorrow, if the weather holds, there will be gardening, and working the horses. I'm not going to hold my breath on that however seeing as today was filled with rain and snow in places. But the gardening bit needs to happen soon. Regardless of when it occurs, the next day that isn't nasty out is going to see me outside playing in the dirt!

It isn't the best picture ever of me, but it does show the corset rather well. And well...I wanna show off my mad sewing skills! Thank you xthread for taking the picture for me since I left my camera packed in my bag all night. (naughty Jeni!)

Ahhh....What a lovely weekend.

I spent Friday night finishing my corset to wear to Norwescon. I didn't end up going to bed until 10am Saturday morning, slept for an hour and then up so I could finish laundry and packing. Jaime came up to watch the kids, they had soo much fun ~ pizza, movies and video games, not to mention getting to hang with Jaime's 14-year-old son Drey! Jaime helped lace me into my corset (which took about 20 minutes of me hanging onto the bathtub shower curtain rod!) I'm pretty pleased with my first attempt at corsetry. Although after having worn it I can already see where I'd make changes.

I stopped in Ballard to see Gigi briefly. Nowhere near enough time, but we'll make a date soon. It was really nice to get to see that group of people even if only for a quick hug and kiss and then heading out.

Arrived at Norwescon around 9pm, went immediately to the room to drop bags (and wouldn't you know it, my boot ~broke~ on the way to the room!) then back to the bar for a drink. I must say, satin is a great icebreaker ;) It's so very petable! (is that even a word? well it is now!) Sat around watching everyone wander by the bar and taking mental notes on all the fabulous costumes. I really must get out to more costumey places, it's like heaven! So many things I want to make, so little time...must make more time! After a bit xthread dragged me over to reg to give me my birthday gift (day rate con badge) so we could go dancing. We headed over to the dance, discovered that yes, they were playing good music, ran back to the room to change me into something that wouldn't pass out from overheating and lack of ability to breathe properly and then back to the dance! More costumey goodness in there! About 2:30 Bri called and said she was feeling better and that she was getting dressed in the Thunderbunny costume. So we went and gathered her and John. By the time we made it back downstairs the dance had been shut down, so we went looking for trouble of course! Ended up having a chat with some good people in a stairwell (funny how that happens). About 5am we were tired and headed back to bed. Snuggled with Bri until she had to get up to work in the Dealers room. Then breakfast with xthread and then back home.

I stopped at the grocery store to pick up what I wanted for my birthday dinner (wild sockeye, baby red potatoes and raspberries and blackberries for cobbler). When I arrived home the kids were over at the neighbour's jumping on the trampoline and having a blast after their Easter egg hunt. sqtristan, tae_moonstryke and I talked about what we all did at the con and laughed that we didn't end up even seeing each other. Then a much-needed nap! My daughter climbed into bed with me and ended up sleeping until dinner. I woke up about 6 and started making dinner which turned out so yummy! Put the kids to bed then snuggled back into my own bed and read before falling asleep.

All in all a very good weekend. Yay!

This Monday marked the beginning. "The beginning of what?" you say. The beginning of the beginning, of course.

Tae quit the soul-sucking job at MicroHell last Friday, enjoyed a nice weekend and then started work with me on Monday. I've been teaching her how to make the Maeve's Unmentionables line over the past several months, beginning with the simplest pieces and working up to the more difficult ones. Monday we began the Feluna bodice. She's now drafted out two and they're almost finished! They look really good. So, hurray!

Moving at this pace, I'm guessing about 5, possibly 6 weeks to hammer out the backlog of orders and then we'll both have a goodly amount of time for creating all new stuff! Whee!! And that's including taking weekends to work on new designs. ~bounce~ I've been able to see the light at the end of the tunnel for quite awhile, but now I can actually see the scenery! Heady stuff.

By the end of this year Maeve's will have a new look and be much more streamlined in addition to having a huge influx of new items available. After three years of making the same things day in and day out, it's terribly exciting to contemplate spending time in the creative design phase again. It doesn't matter how much you love your work, when you're doing the exact same thing day after day, it eventually becomes dull.

So here's to no more dullness in the workplace!! Hurray!!

I got to ride our horse again today! Wheeee!!! That makes for a very happy Jeni =)

This is the first time I've ever ridden bareback so each time I get off I'm a bit surprised at how sore my inner thighs are. (Yes, I am very aware that saying that sounds quite naughty.) We've only been walking her for now. Helping her build up better muscle tone and getting both her and us as riders accustomed to how to properly give riding cues. We bought a saddle and by the time it arrives she ought to be ready for trotting! ~bounce~

And now...time to begin creating new and exciting garb! Life is good!

Dustin and Tae, I wish you both much happiness. Way to go on the proposal Tae, the ring is gorgeous =)

I almost want one...just cuz it's so pink and cute!