Wednesday, December 16, 2015
Tuesday, November 24, 2015
Have a nice end of November,
Thursday, October 29, 2015
I know it's only been a day but I already have more exciting news. So we went to the physiotherapists, and Jay get me to do my leg-y stuff, and all I did was two things, when he said that all I need is some stronger bands, and that I don't have to come back unless doctor Missuna says so or a problem arises. So yeah. I no longer have to go to the physiotherapists because I'm just that bendy. Not actually, but still.
Good luck Gonzalo and Gonzalo's family, and thank you so much Carla,
Talk to you as soon as something interesting happens, happy Halloween/ Saturday,
Wednesday, October 28, 2015
I'll try to update more often,
Friday, September 18, 2015
Once again, good luck Gonzalo, and Gonzalo's family.
Write again soon,
Sunday, September 13, 2015
I wish you luck Gonzalo.
Until another day,
PrincessPants👸🏽 (AKA Avery)
Monday, August 17, 2015
So, on June 27 I did something hoping it would pay off and bring a big ole smile to Princess Pants' face: I sent an email to Taylor Swift and Vance Joy. Taylor is on a world tour and Vance is one of her opening acts and Pants loves them both (more so Vance, I think). I explained in my email what Pants went through and how she listened to their music and told them the story of her class wearing tiaras on her last day of school before surgery. I asked them if they would be so kind as to mention Pants in a tweet or send her an email or autographed picture. Somewhat jokingly I said that if they had a picture of them wearing a tiara that would be positively epic.
Well, on August 6 I got a FedEx envelope from Vance Joy addressed to Pants. It looked like it would hold an 8x10 photo and figured that Vance's manager or PR person sent one along from the stack they have in the office (I'm sure he signs a bunch every time he sees his manager for just such an occasion). Pants was up at the cottage with Grandma that day and we were to bring it up to her the next day.
Jodi noticed that the envelope was mailed overnight delivery and came from Edmonton and mentioned that Vance and Taylor were just in Edmonton. I reckoned at this point that what was in the envelope was probably more than just an 8x10 glossy off the stack in the office. I was right. I decided that I would record Pants opening the envelope to see if her reaction was YouTube worthy. It was.
Inside was an autographed picture, and a hand-written note which read:
I find your bravery and strength inspiring. It means a lot to me that you have been listening to my music. I don't have a tiara on me right now, but I have decided to draw me in one. I'm on your team!
(Looks more like a crown, sorry lol)The video above tells you all you need to know about how well this worked out. Her reaction brought a tear to my eye and still does every time I watch it (which is often).
Thank you, Vance Joy, for making my daughter feel like the happy, elated, giddy teenager she deserves to be.
Thursday, July 30, 2015
Saturday, June 27, 2015
Before I had my surgery was an emotional time for me. I was both terrified and excited. Terrified that I would die in surgery, and excited that if all went well my back would be better forever. On my last day of school my whole class wore tiaras, and one of my teachers got almost all of the seniors to wear ones that they made in class. It made me feel so fantastic. You have no idea how wonderful it felt. We got a picture of my class wearing tiaras, and I've kept it as my background picture on my iPad until just recently. That picture reminds that these people care about me, even just a bit. And I care about them. I've known most of them since grade two, and some since grade five, but I've still know them long enough to be sad that this year is over. Two whole months not seeing some of them. I know that I still get to see them next year, so it's not REALLY the end but it still fells like it. Were not leaving to go to high school, but we've starting preparing. I mean, we just survived our first year as a seniors, doing different subjects in gym, new stuff at track, millions of new things that we learned in all subjects, our first year of math in English instead if in French (which by the way, makes it a lot easier to understand) , our first year with history instead of social studies, our first year starting to get points towards the award of excellence, and much more. This year has been full of good and bad things and I'm happy I got to spend it with people I did. Even the nurses and doctors were pretty nice. Thank you to everyone who's been with me on this journey, even if you didn't follow it as it happened. And I hope everything I've written (and will continue to write) has and will help you in someway as it has me.
Thursday, June 18, 2015
Wednesday, June 10, 2015
Friday, May 15, 2015
Thursday, May 14, 2015
Friday, May 8, 2015
My company, Agfa HealthCare, has one of these old-timey looking popcorn machines that they let employees use every Friday. The company buys the popcorn, all you have to do is set up shop and pop the stuff (and clean up everything after) and you can sell popcorn for $2 a bag. The only conditions are:
- You can only send one email to the office promoting your event and one email afterward thanking everyone (so as to not spam / pester everyone)
- The money has to go to a registered charity
- $238 ($245) if you include the 5€ note someone gave us
- Two blood donors for the drive on May 14
- One blood donor who can't make the 14th but will donate at another point in the week
Wednesday, May 6, 2015
Sunday, April 12, 2015
She is up to over 4 hours a day of school, and adding a little more every week. Really, her recovery is going as good if not better than expected. I think Andrew noted a month ago that the hard part is going to be slowing her down.
She was a little upset last week as we had our first thunderstorms of the season - she texts us every day to say she got home from school ok. Thursday's text included a note about how she was afraid she was at risk for lightning strike due to her new hardware...
And I suppose we passed another milestone - Andrew and I went out in the evening and didn't have a second thought about leaving Avery with her brother. Last month he (ha, both Andrew and AJ) would not have been okay with that as she was still getting too tired and needed to rest, but no one linked an eye at it last night. Oh how wonderful life is these days.
Saturday, March 21, 2015
- Avery has mastered getting her taxi, and she books it before we leave in the morning, so we know how long she intends to stay (2 hours a day before March break)
- On March 13 she had an appointment with her surgeon. He was so pleased with the results he called in another ortho intern or resident to admire his handy work, and he sent Pants home with screen prints of the before and after so she could show her friends (Andrew and I both keep that as our screen savers on our laptops both home and work)
- I learned that the surgeons did not make any lateral bends in her rods, which is to say she is pretty much perfectly straight. All the reading I did beforehand suggested we would be lucky to get her below a 20° curve post-surgery
- Pants learned how awful overdoing it in a day can feel. Following the Dr.'s appointment (including the 1.5 hours in the car) she wanted to go to school for the afternoon - it was the day before the break and they were going to be watching a movie and a basketball game, so we said fine. I picked her up at 3, and she went right up to lie down. Friday was also Andrew's birthday, and that means dinner out. Andrew kindly chose Mandarin buffet as we knew it could be faster than table service, and we headed out before 5. Dinner was yummy, but by 6:30 it was pretty clear Pants was ready to fall over, so we headed home. And at 3:30 am she was up feeling so nauseous and scared of what throwing up was going to do to her back. I got a Gravol in her, but half an hour later she couldn't hold it in - and in her practical way, said well, I threw up in the sink so I didn't have to bend over and it was fine.
- She was cleared for floating. Monday night Pants and Andrew went to the Y. Pants wore a scar baring tankini top - I love that she is so comfortable in her skin (because really, it is a pretty cool scar!)
- Pants was excited the other day because she sat up in bed. I didn't get it, until she demonstrated that up until that point she had been rolling to her side and pushing herself up to sitting, but last week she just went right up to sitting.she was quite pleased with this feat.
- Her grandmother came for a visit on Thursday and took her in to Waterloo for lunch with Andrew. Her appetite is definitely coming back as she ordered the dinner steak and wedges and got through half of it - then ate the rest for lunch the following day.
- Her grandmother brought her a couple of vitamin E treatment to to help the scar heal, but Avery has asked if she has to use them, because as I said above, it is a pretty cool scar. We will keep them on hand should she change her mind.
- She went out for another float - this time we confirmed she could in fact swim lightly, and that made it even better. I think we will try to get her in the water a little more often.
- She walked over to her friend's house to see if she could come over - it isn't far, but it was the longest walk she has done since the surgery. It is so much nicer now that the snow has started to melt.
- Yesterday she went to a movie. Another milestone as far as being able to be out and seated in one place for almost 2 hours, but she also needed a long rest when she got home.
Thursday, March 5, 2015
That was Sunday. On Monday Pants had her very first solo cab ride on her way home from school. Jodi drops her off in the morning and she stays for two or three periods (60-90 minutes) and then she takes a cab home. Everything went just wonderfully except for Tuesday when the taxi never showed up. She spent a good hour longer at school than she had planned. When I called her to see how she was doing the sounded very anxious and admitted that she was really starting to not feel well and just wanted to lie down.
The cab got her home eventually and we've not had any problems in the two days since, so that's good news. Pants started doing some homework as well but we keep having to remind her to do it instead of lounging around reading or watching YouTube videos. She likes schoolwork (except math) so it shouldn't be too long before she's back in the groove from a learning standpoint at least. Hopefully she will add another half an hour onto her in-school time every week and get back to full days by the time the snow melts (if it ever melts!)
That's all for now. Pants is doing really well and we go back to see the surgeon on the 13th (my birthday).
Sunday, March 1, 2015
The scar is a little sticky still, and perhaps a little misleading as her spine in almost perfectly straight but the scar is curved. I suppose the surgeon could only guess as to where her spine would end up once he was done.
Facebook has been super aweseome. We will be sure to share all the comments about just how bad-ass she really is.
Friday, February 27, 2015
This week's excitement involved the purchase of some fancy orthopaedic sandals for Avery to wear around the house to help address her pronating knee.
Otherwise, her scar is healing up nicely and the steri strips are slowly but surely coming off.
I am pleased to say that that is really all I have to report. Things are progressing well and Avery remains ever positive.
Sunday, February 22, 2015
Avery has been complaining of sore legs this week, and my non-medical assessment is that she really needs some better arch support as her knees are pronating - so for now she is wearing her croc slip on sandals and we will see about something a little better - birkenstocks or mephistos, but we need it to get a little nicer out first I think.
Wednesday, February 18, 2015
I've been back at work on a normal schedule for more than two weeks. I get up early, being careful to not wake Jodi up on my way out of the bedroom. 50% success rate so far! I get to work before 7:30am and stick around until 4:15pm or 4:30pm. By the time I get home Jodi has made some fantastic dinner and even done some of the dishes (best. wife. ever.) Throughout the day I get text messages of Pants' progress and I have to tell you, it's always the highlight of my day.
Pants is walking better, and moving around in general much more naturally every day. We're told it is going to be six to twelve weeks before she starts to feel "normal" again so to see visible progress in that direction every day is just great. We're looking into taxi's for her to get home from school until she's comfortable enough to walk from the bus stop to our house which likely won't be until after the snow clears.
Our superstar patient did a full hour at school today! That is such a big step and bodes well for getting her back reading again. Jodi sent me a picture of the part of her back where the Steri Strips finally fell off and the scar looks good. Nice clean cut, not too wide. Every day I find a new reason to be impressed with the care she's received and with her in general.
Sorry, this post is all over the place.
Things I've noticed:
- I'm still walking around with this tension in my upper body. It's not near as bad as the first week after surgery but it's still there. I'm told this could take a while to subside
- I am still sleeping like crap most nights. As an insomniac who was sleeping not-too-badly before the surgery, this is frustrating. Some nights are not too bad though and that gives me hope
- Pants does at least two things every day that make me so proud
- I'm really going to miss having Jodi home all day. If she's even half as productive in her office they're going to love having her back
- The Dude is handling everything quite well, but I have noticed he's more cuddly and asking for more hugs; two things I am more than happy to provide in great excess
- I never get tired of showing people the before and after x-ray pictures and before and after height picture
The next phase starts when Jodi goes back to work. I think she'll drive the kids into school and then Avery will take a cab home whenever she feels she's had enough, eventually working her way toward a full day, after which I'll tweak my work schedule to pick her up or she'll take the bus so she only has to walk the last couple hundred meters.
Tuesday, February 17, 2015
And tonight she came running down the stairs visibly vibrating and unable to speak - turns out she pulled off a couple of the steri strips and was rather concerned she would split in 2. We reassured her that the strips are in fact supposed to come off and perhaps should be coming off, and she settled down and went back up to bed.
That's all for tonight.
Monday, February 16, 2015
Wednesday, February 11, 2015
And her appetite is back - though she needs to eat smaller meals at several points through the day - but I have read that is better for the body anyway.
Oh, and she is off the heavy pain meds altogether - we have kept a small supply, but I think they will be disposed of before long. She can take tylenol or advil as she needs, which she asked for today - though not for her back, but rather her legs - she thinks she might be having a growth spurt!
She can shower mostly standing, but likes to have the bench available, if just to enjoy the warm water running over her back. I was helping to dry her hair and noted that the top 2 steri-strips have curled up at both sides, so I went to remove them and she panicked and screamed not to take them off - seems she is a little concerned she will rip right open without them. So I left them and reassured her that that is not at all the case.
We are off for a pedicure - fingers crossed this isn't too much for her, then after a rest and some dinner she is going to stop by to say hi to Yoga Mike and the class she practiced with. I am so very thankful she and Andrew attended this class together - the number of times people remarked at her leg strength while in the hospital was always responded to with a mention of squats and yoga practice - and every single person who heard this paused for a moment to think about it then nodded as if to acknowledge it made sense. A few even asked her a little more about it. Hopefully in a few months she can start back again.
Today we researched bus routes and schedules as an option to get her home from school - though I will also check with a local taxi company to see what we can do - I don't foresee her walking the 2 km home from school again this school year, but who knows - maybe once the snow clears she will enjoy a 2 k walk with her brother. The bus runs every 30 minutes from right outside her school and in under 15 minutes has her 200 meters from home - we may take a test run this week to see how it goes as I don't think she has ever rode a city bus in her life, and definitely not alone.
We almost made it our for a pedicure, but then she started to cry. Maybe it was too much. She said she wanted to go, she showered and got dressed - we even had her shoes on. Another day. She just needed a rest. I think she is so terribly freaked out about not being able to control how she is feeling or the fear that she will start hurting and not be able to do anything about it - she honestly was looking like she was when we were last at Dr. Missuna's and she desperately needed to lie down. So she is lying down. Hopefully the trip to the yoga studio will be a success tonight.
And just as I was leaving to pick up the Dude from school, Avery's teacher called to see how she was doing - I heard 'awesome' then had to leave. Since I am driving anyway, I normally drive home one of Avery's friends - and today she asked if she could come for a visit. I think this day has come together just fine.
Here is Pants looking ready for yoga :)
Friday, February 6, 2015
Tuesday, February 3, 2015
The first thing I remember after coming out of surgery is my parents saying it was 9 o'clock. The next thing I remember is getting a popsicle because I burped which I felt stupid but apparently is actually really important . The next thing after that that I remember is standing up and walking to the washroom. That also seemed to be quite special to everyone else and I understand because that one was also a big deal to me. Right then I could feel how difficult it was going to be to do everything else and I had to do, like walk upstairs, sit upright for a long periods of time and get out of bed without handles to help. It was right than that I really realized how drastic what they had done to me was. For goodness sake, I had 27 screws and two metal rods in my body and they expected me to be able to touch my toes, put on socks and shoes, and live like a normal person. I was terrified, but at the same time I was amazed at how much I could already do. I could already get up. I could walk a little bit and I could go to the washroom. That all may seem really small and insignificant to you guys but it all seems so big at the moment. It all seems so important.
I hope you can learn from my words, and I hope that you never have to do what I had to do.
Thanks for reading,
Saturday, January 31, 2015
I don't recall if we mentioned how her hips, knees and ankles were all cut up from the rigors of surgery, so she is also finding that only a few of her underpants are comfortable as most of them the band runs right across her scabby hip bone.
Today we left her home for a few hours with one of her friends - she doesn't need constant care but I also am not ready to leave her home alone. On day one she could not put the feet up on the La-Z-Boy, but now she can - but she also can still get stuck leaning too far back and cannot pull herself up enough to get out of the chair, so someone to rescue her is a good idea.
I told her my signal to start talking about school again is when I see her reading, so she tried today, but couldn't keep her focus to make it through a chapter. She is still on the good drugs, so I give it another week before she starts thinking properly again. She is also curious how she will handle sitting in her desks, as she can currently only handle being up at the table for about 15 minutes before she needs to recline or full on lie down.
She is still using the jerry-rigged safety rail to get in and out of bed - I knew we were keeping that old sewing chair for a reason! But she pretty much skips down the stairs, so that came back like nothing.
Yesterday I was out a quest for a bath bench, which I found, but then had a laugh in the evening after Andrew went to install it - I seriously forgot the kids have a 1 piece bath/shower thing, so there is no lip on the wall side for the bench to rest on - Andrew made it work though and Avery enjoyed her first shower in 10 days.
Otherwise, as long as we have pain meds, a pillow and some water she can handle most anything we have thrown at her. She eats dinner at the table with us, but gets exhausted by the effort to cut up her food. Her first food requests were all finger foods, I thought for ease of eating, but she later told me that our utensils weigh too much - things I have never considered before.
Before her appointment in Hamilton yesterday she asked if we could go out somewhere. By mid - appointment she had fully changed her mind. I am hoping she will be up for a visit to school this week - her classmates have been amazing and I think it will do her soul good to see a few more of them in person.
That's all. Just a few random things in case anyone is reading this as a guidance document for their own kid.
Friday, January 30, 2015
We asked about physio and he said that would start at about 3 months post op. We asked about her body movement and how long it would be before she started to move around more naturally and get used to her new body. He said that at 6-12 weeks they start to feel more comfortable, and that she's still ahead of the curve.
"Bend" - Woot Suit Riot
Wednesday, January 28, 2015
I don't have a whole lot new to update you with except to say that Princess Pants continues to exceed every expectation. She's walking with a bit more confidence every time she goes for a stroll or up and down the stairs. She can get in and out of bed on her own. Even her appetite is returning, albeit slowly.
Avery promises to write a post soon to let you all in on the events of the past week from her perspective. Please be patient as pretty much everything she does is exhausting and typing out a big post will drain her.
In the meantime, I took some before and after photos and put them together side by side so you could get an idea of the difference. I flipped the before picture so the lines would line up a bit better so imagine her bent the other direction for the pic on the left. Also, this is far from precise. I didn't get the angles and distances quite right so the proportions weren't perfect. Nevertheless you get a really good idea of the difference.
|Left: Before surgery (Jan. 18). Right: After surgery (Jan. 28)|
For those who many not have seen it in a previous post the difference in height is 5.5 cm (or roughly 2 1/4 inches). Pants now stands at an impressive 168.3 cm (5' 6.25").
Tuesday, January 27, 2015
Pants felt like a new person once she was cleaned up.
About an hour later, we were cleared to leave - conveniently at about the exact moment Andrew arrived, so Andrew gathered all our stuff and packed the car, and Pants put on some pants so we could go home.
The drive home was uneventful, and Pants was eager to get home. Once in the house, she took up court in the living room and asked for a toaster grilled cheese. I whipped that up for her and then she ate the whole thing! That is the most food I have seen her in a week!
I had a tepid shower in the family shower unit. Refreshing!
Xrays have been completed - though Pants really did not like the process, mostly because the wheelchair did not support her head and that made it hard for her to focus. I stood behind her for a bit and let her lie her greasy hair on my belly. The orderly was taking too long so I brought her back up to the ward by myself. We walked past the main entrance and she was quite happy to feel the breeze coming through the doors.
Her new nurse has said there is some sort of hair washing apparatus that can be brought in, so hopefully we can get that taken care of as she is still another week away from being allowed to shower.
Andrew is getting the house set up - we think the lazy - boy on the main floor is out best interim solution, though for the past 2 days she has preferred to be flat on her back. The fireplace living room gets some normal tv plus the netflix so it maximizes her watching options and is beside the kitchen.
So now we wait. Hair wash, doctor visit and release orders. Next update from home :)
Monday, January 26, 2015
The steady flow of pee has finally tapered off as the last of the surgery/iv fluid build - up has been passed, so we are at a much better walk frequency.
She still has no appetite, but tries to eat something each meal - I didn't even question her when she spit out the 'grilled chicken thigh' as it must have tasted like it smelled - so she agreed to some fruit loops instead. I would love to see her actually eat like she is hungry, but right now she finds the effort of sitting up and moving food from tray to mouth exhausting. There is always tomorrow.
The other accomplishment for today was leaving the ward on her own feet to the playroom and back - without stopping as she didn't think the chairs looked too comfortable.
So I think we just need some xrays and then we can leave, but apparently there is a process to that and it hasn't happened yet. We get asked by lots of people about the release plans and have to say we don't know. Maybe I will just tell them we are leaving tomorrow and see what happens.
Here's to hopefully a more restful sleep for both of us.
At 4:00 she thought I was sleeping too soundly, so she decided to just go to the bathroom by herself. Like got out of bed, slippers on, all by herself. Unfortunately for her, she dropped her gown on the floor and I jumped up to find a nearly naked Pants just standing there. That wake up worked out as she was due for the 4 hour pain meds, and I had asked that if she was (finally) sleeping to skip that dose.
So far this morning (let's say morning started around 7) she has been down the hall to the washroom three times, nibbled some breakfast, sat in her chair for an hour and is back in bed waiting on the physiotherapist and x - rays.
I am still holding out for a nap, so my uber comfortable hospital cot is still in bed form (it converts from a chair).
Sunday, January 25, 2015
While she took a seat and tried to relax a little, we took advantage of the sink and towels and cleaned her up a bit for her first non - family visitors. The walk back she pushed her IV pole and only held Lisa's hand for comfort more than support, then turned herself and sat down without any help (well aside from me opening the back of her gown - she is very hot with ice brick extremities).
She stayed sitting for over an hour, briefly spoke with her visitors then got back to standing with little assistance and back to bed. Her IV was bothering her, so after a few complaints her nurse removed it - and didn't replace it! She said she would wait until the resident showed up, unless Avery started peeing much darker than coors light.
Her room gets lovely daytime sun, but as a result, her room gets wickedly hot while the sun is up, then cools off fast when the sun sets. Pants' mannerisms remind me of me when I was having her - hot and not wanting anything on me and no one to speak to me.
Then she ate lunch 2.3 fish sticks, some carrots and one Dad's oatmeal cookie. She needed a little rest, but at 2:00 asked me to take her to the washroom again, so since dad was gone, we called over nurse Sandy and trekked down the hall - me with her catheter bag hanging off my jean pocket as she no longer had her IV pole to hang it off of.
She walked back that time all by herself - me trailing a step behind with the pee bag. She got herself seated with no help and watched some tv for half an hour or so. I needed to grab some lunch and left for about 10 minutes, and noted her room was on the call board when I re-entered the floor so I hurried back in. Seems she wanted back in bed - so we just did that - she used her awesome squat muscles and pushed up to standing then sat on her bed and lay down - all by herself.
Around 4:00 her surgeon showed up (and scared the pants off nurse Sandy!) And ordered the central line out - but then volunteered to do it himself. Seems that one gets stitched in to place, so he removed the stitches and left the nurse to bandage it. He also told her she could remove the catheter.
So by 4:30 she was officially line and tube free and can roam as she wishes. She does have to pee in a 'hat' to measure her outputs, but that is nothing.
Oh - and in case you didn't know already, the patient services at this hospital are amazing. We were invited to a toy give away at 2. I figured McDonald's toys - but no, these were full size amazing toys. Colour explosion kits, trucks, dolls, colourings sets - and all the name brand ones. Free. Just for being here. She didn't feel up for the walk, and I was going by around 3 when they were leaving and was called over to see if there was something she might like.
I anticipate a couple more walks tonight, then x - rays tomorrow and more physio with Jill and maybe bringing Pants home by Tuesday.
So here is Pants - no strings (wires or tubes) attached :)
Saturday, January 24, 2015
As not to totally embarrass her, let's just say she ticked one of the 3 things she needed to do to be able to go home off that list ;)
The physiotherapist arrived around 2:30 and we had already gotten the room all prepared so as not to waste any more of her time. Avery was entirely bewildered about how it was she was supposed to get from lying to standing, but after a little refresher got to upright. She walked twice as far as she did yesterday and even a little faster. She'll be scooting down that hallway in no time. And Andrew and I were cleared to be her hall shuffling escorts - so if he is back tonight perhaps we will try to get that second walk in after all.
Since she was feeling a little flushed, we just did up her gown instead of adding the robe today - which only sucked for the entire time she was sitting as I hadn't been quick enough to untie the back and she found it terribly restrictive to sit in. While she was in the chair I wiped down her legs, I guess that is almost a bath. After just under an hour, she was so uncomfortable she felt she needed back in bed. We did manage to get her some fresh sheets and a clean gown. I hope we are getting closer to losing some of her tubes and lines, but have decided asking doesn't really do much for us
I was quite pleased when Avery ordered the fish sticks for dinner - and when they came she even ate 1.5 of them. Protein for the win!
Otherwise, it seems Pants keeps herself quite cool so the finger monitor keeps not being able to get a proper read. The one nurse was going to try a toe, but then felt her ice brick feet and immediately went to find a heated blanket to wrap around her toes.
So now we wait for Pants' wishes for the night. Andrew is planning on coming back, and I promised the PT I would be back by 9 am, but we'll see. Sometimes a girl just wants her (less snoring) mother as her roommate.
If anything else exciting happens, we'll be sure to post.
Last night the nurse was wearing a Batman t-shirt. She's been my favourite so far :) Avery took her Tylenol and long acting oral pain meds (only 3 pills) and then hit her morphine pump. A couple minutes later she started talking in her sleep, "When's the next course?"
"Four hours sweetie. Batman will be back in four hours."
I had a dream that a couple friends had me over for dinner and instead of offering me a regular bottle of wine they took out this wine bottle that had a peel back side. They lay it down on the counter, took a bread knife out and slid it through this lengthwise opening, and cut me off a slice of fish. I think it was a Northern Pike Grigio.
Now I'm beginning to wonder if maybe Batnurse wasn't slipping me some of the good meds in the water she brought for me.
Pants had a rough night. She couldn't get comfortable. Also, one of her IVs was leaking (down her arm this time, not into her arm) so she probably wasn't getting her full dose when she hit the PCA button. They got her IV switched over this morning and hopefully that will improve things. We need her to hit the machine less so she can transition to oral meds (a requirement for going home) but she needs to also manage the pain so she can do her physio. It's a balancing act that she hasn't quite figured out yet.
Today we are going to focus on getting her eating more and walking more. The surgical resident figures she'll be standing on her own comfortably enough by Monday so they can take some X-rays. Her goal for today is to get up and walk twice and by the end of the second trip travel almost three times farther than she did yesterday.
Aunt Stacey will visit too with a possible appearance from The Dude (who misses his big sister) so it's going to be a full day.
Jodi's going to tag me out after The Dude's bowling and I'll go home and get some proper rest before coming back later tonight.
Friday, January 23, 2015
I was excited when I got here today to hear that he ate a whole apple. Lunch didn't go over as well with all the walking and sitting in a chair for 3 hours, but I held out some hope for dinner. Aunt Kari showed up mid afternoon with the promised snuck in mint chocolate chip ice cream from Baskin Robbins, which Avery gratefully accepted. She managed to eat a tablespoon or so of that then needed a rest. One of the excellent staff came by to see what she wanted for dinner - the Friday night special being meatloaf with mashed potatoes and peas - she wasn't interested in the meatloaf, but asked for the potatoes - with gravy - and a bowl of soup and some apple slices. This was apparently a very odd dinner order, as the guy who brought up the tray called me to make sure this was actually what she wanted. She ate a tablespoon of potatoes and a spoonful of soup then pushed the tray away. I think she is starting to get the link between food and poop.
She has been drinking tea. Maybe not the ideal beverage for a 12 year old, but on the beer scale of urine colours, she is clearly sufficiently hydrated.
The video chat with her class did her wonders, and the cheers and applause when she announced she walked was amazing - I think Andrew said it brought a tear to his eye, well it did to mine too (mind you when I stalked by one of her friend's house this morning to pass on that it would be nice if they could call her again today, I had tear then too) she really has some awesome friends. Her teacher is hoping to make it up for a visit, if not Sunday then early next week, and around dinner her Principal called to see how she was doing.
Andrew said she had been consistent with her pain pump for the first 2 days at about 200 hits each day, and unless something goes south later today, I am certain that number will be significantly less tomorrow - which also heads us the right direction to transition her to oral pain meds and losing yet another line.
Andrew and I just moved her bed so she could still watch TV while she is on her side - I hope the nurses aren't upset :)
Thanks for following!
"I want to go home. Why can't I just go home?"
"I wish I could live a different life until all this was over."
"Why is everyone asking me to hurt myself?"
These are all things that Pants said to me over the last 8 hours, the last one just before midnight. Her oxygen saturation levels were dipping below 90 even though she was breathing just fine (95 or better is what we want to see). The nurse was asking her to cough and take deep breaths and that makes her back hurt. I was getting her to breathe deeply and her levels were getting up into the 90's again but would dip back down after she stopped the deep inhalations. Apparently this is common when kids (and possibly adults) are on morphine and sleeping deeply. At least that's what the nurse told me. I Googled it and didn't get the search terms right I'm sure because all I found were links to terrifying studies I could have gone all week without having seen.
The nurse went away and came back with a cylindrical container of water that she attached to the oxygen hole in the wall and then hooked up one of those over-the-ear and up-your-nose plastic tubes. Immediately her SATs spiked back. The oxygen bong was working!
I felt better and thought of Vinny Barbarino. Pants said to me, "I feel like Hazel Grace". I asked her if that was April Grace's mother or grandmother and Pants made a face; one of sheer disappointment that, had she been in a healthier mood, would have come with a "Dad-dy!" (if you know my daughter you have heard this many times before). She then informed me that Hazel was the terminally ill kid from The Fault In Our Stars. I made sure she knew that this was a little different and that she didn't have cancer, she just had morphine. She hit her button and gave me her best smile. That kid has got impeccable comedic timing.
All was well again. Now if we could just the the code red in sector whatever to stop that would be great. Also, they are performing maintenence on the code red system so if you have a code red dial extension 5555 (or get in touch with Colonel Jessup).
To wrap up the evening's midnight festivities she closed with a quote that would make Charlie Sheen proud:
"I just took five pills!" [all at once]