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.
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
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").
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 :)
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).
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 :)
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.
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]
The physiotherapist had her sitting in a chair, but she was done with that after about an hour and honestly looked uncomfortable the whole time. We figure her organs are settling in their new and proper homes, and that is making her not feel so great. The nurse cleared her for a Jolly Rancher hard candy, so that has been her primary sustenance. The kitchen offered her some toast and peanut butter - she was excited about that, and did manage to eat almost 1/3 of the piece when it came.
Today she doesn't want to be up, preferring to recline at about 20°. The tape on her chest is making her itchy, but not the worst. They removed one of her IV lines this morning, and we are hopeful to have either the central line in her neck or the remaining inactive line in her right hand removed today too.
Andrew has decided that he wants to stay tonight - i really think she would be fine on her own, but maybe Andrew needs this for him - but after a night of constant alarms and nurses, he may decide that we are better for her when we are rested.
I noted that her right leg, which was sitting about 1 cm shorter than the left before surgery, appeared even shorter when I looked at her lying in bed, but admittedly she wasn't lying straight, so hopefully it was just how she was positioned. I saw the surgical resident who aided in the surgery and he told me he was fairly certain I was mistaken, but until she is steady enough for x - rays, I will just have to trust him.
I stepped outside for a few minutes this morning, realising i hadn't breathed fresh air since early Tuesday. Hopefully Avery will be a little more mobile tomorrow - or they will allow her to go in a wheelchair so we can walk around a little.
Now, she can talk - almost audibly, eat and roll from side to side. She watched a movie and decided it was time for bed - I may soon join her as I am spent and I doubt it will be a truly restful night.
I wandered in to the Ronald McDonald House room on this floor - free coffee and snacks until 11. Colonel Sanders adorns the wall outside of 3 B and in the hall one of the wings is sponsored by Walmart.
And lastly for tonight's ramblings, the hospital is selling a stuffed something and neither Andrew nor I were certain what it is - possibly a pig with horse legs :)
Thanks for hanging in here with us, I don't think we can articulate how much your collective support has helped us get through these last 36 hours.
As of 2:30 Avery was back lying down and overachieving in every category. She burped and that was a big deal so they gave her a Popsicle (mango, her favourite) and she immediately started talking better. She was also allowed some water. The hard part is going to be slowing her down! She wants to do everything she can and we have to remind her to let the nurses do the work and she needs to just relax. Such a fighter.
Jodi slept not too badly and will likely sleep not too badly tonight so Avery said it was okay if I went home and got some rest and saw The Dude. I'll relieve Jodi on the day shift tomorrow. All things considered things are going as expected now in spite of the rocky night and rough morning.
My brain is mush, so hopefully this update made some sense. I'm going to take a nap.
We've been at the hospital for 24 hours. Let me tell you that the first 12 hours were a cake walk compared to the 12 that came after and the 12 that are ahead.
Extubation happening this morning. Hopefully the fever is under control. Jodi stayed in the room and got a bit of sleep after a couple bouts of excitement. I grabbed a couple zzz's on some chairs. Princess Pants is strong and fighting. Some good kicks and resistance to the nurses (trying to keep her tube in).
No machines are beeping at the moment. This is a good thing. The sound of the ventilator overpowers the quiet room. I'm afraid to move and upset the Feng Shui.
Something just beeped and woke Jodi up. The nurse came in. One of the many bags of something feeding her medication was due for anorher dose. It was the sedative. They'll be waking her up soon.
I'm going to get a coffee and brush my teeth.
To survive the surgery, Avery not only needed the blood donation Andrew provided, but 3 or 4 times what he was able to give. So I will once again echo the sentiment - if you can, please give blood. If it wasn't for the generosity of strangers, she might not be lying beside me right now.
I kicked Andrew out of the room to try to get some sleep in the family lounge, and I have checked on him twice and he seems to be getting some sleep I am glad, because tomorrow when they extubate her, we are going to need all outer strength, emotional and physical to help her recover.
I did, however see her eyes slit open for a second, and she was kicking and flailing when the nurses moved her, so there is one big sigh of relief - all her bits work :)
So now we wait. Anxiously. Another waiting room, another wait.
I tried to update Avery's classmates - though I am not sure that a few of them still don't think it was Avery just speaking about herself in the 3rd person.
Time passes very slowly here. But my step count is over 5k :)
In the car on the way to the hospital. Avery slept well but admitted to waking at 11:30 to get her last sip of water for a while and to have a good cry.
Jodi says she did not sleep very well. I know because I saw every hour on the clock and she was tossing and turning quite a bit.
Our ETA is about half an hour and we should arrive before our scheduled 6:30am appointment. I will be taking her in to be sedated at 8:00 am and then the longest 10 hours I can imagine begins.
More later. Thanks for thinking of us.
We went to the pick up counter, and asked for her script, pointing out it is refrigerated. Nothing. Not even a non-prescribed one like last week. So I speak with the pharmacist. I explained that when I picked it up last Sunday, I ordered the refill for today. I spoke with both the pharmacist and the tech. The tech even took part of the script print out 'to make sure the details are correct'.
The pharmacist (who has been our pharmacist since 2000) was very upset. He called every pharmacy in the city, but as my experience showed 2 weeks ago, no one had this drug in the required dose. He then called his pharmacy rep and pleaded with her to get someone over to the warehouse. In the end he asked for my cell # and promised to text me once he had confirmation.
I got the text at 5:47 stating that the courier will be delivering the needle around 8 ( and the pharmacist will be in an hour early to get it) and he will text me once he has it in his hands tomorrow. He apologized again and thanked me for my patience.
So it will all work out. Just like this whole surgery thing will.
Tiaras? Yep, because our daughter whom we affectionately call Pants isn't just Pants. Her official nick name is Princess Pants - her name actually started out as Princess Paloney Baloney but has since evolved - the point being she's our little princess and princesses wear tiaras (duh!)
We decided as a family to pull Pants and a couple of her friends out of school on Friday so we could take them to Great Wolf Lodge indoor water park for a bit of fun. The surgery is on Tuesday and we weren't about to make her go to school on the Monday so that made Thursday her last day of school before the surgery.
For her last day of school before surgery Princess Pants decided that she was going to wear a tiara - just because she could. Her two Great Wolf Lodge friends, in a show of support, also decided that this should be a thing and agreed to wear one as well. Before too long the teacher found out, and then the rest of her class, and what they did brought a tear to my eye.
The whole lot of them, even the boys, donned tiaras for a class photo!
Unfortunately I don't think I can post the photo here as we didn't get permission from all the other kids' parents to put their picture on the internet but I can tell you that it's truly a beautiful sight.
Thanks to those who provided some headgear, thanks to her class for being such a great bunch of kids, thanks the teachers for going along with it, thanks to her friends for being such great friends, and thanks to everyone for being so supportive.
Next up was her first health study invitation - this one is apparently worth 4 hours towards her volunteer hours but I am not sure if she can earn high school credits in grade 7. This study is aiming to better understand immune-metabolic connections to health a study of the role of the immune system on body weight and metabolism.
Then we saw the nurse. She was lovely and went over her bits, then ended to take some blood from Avery. While the blood work was happening, we were approached for a second survey focusing on pain management during scoliosis surgery and treatment. This one comes with a $10 gift card for one of 3 places. After a failed first attempt at blood collection, the nurses had success and we were back in the waiting area.
A few minutes later we were into see the anesthesiologist. We expressed the potential allergy to anectine, but we're assured that it would not be used for this surgery and in fact is rarely used at all these days.
And then we were done. We are due back at 6:30 am on Tuesday, January 20th for surgery. One of us can sleep at the hospital with her all week. We'll see what makes sense for us.
Now it is just enjoying this week. Great Wolf Lodge is in 48 hours so I think we will focus on that.
I am hoping Avery will let me take some before photos - so we can tell the full story once this is over. She did measure in at 5'4" today - and will likely be 5'6" this time next week.
(She did let me take some photos)
We had time for a few questions, and then the surgeon stopped us to ask about Avery's injections, to which we all looked at him a little puzzled. Turns out ideally she would have started these Eprex injections a couple of weeks ago to help stimulate her red blood cell and bone marrow growth in advance of her surgery. So we left with a prescription and instruction to start this today with her family doctor, and if that wasn't possible, to head back to Hamilton tomorrow so he could do it.
I should have realized that this was not going to be easy by that offer. I was driving, so I had Andrew call the nurse to ask if this could be done. When she called back, it was a little special, and is normally administered in a hospital, so she needed to get clearance to do it. After we got home, she called back and said they could do it at 2:50 today. This was at about 2:00.
Next up, I thought perhaps I should call and confirm if the pharmacy had some. I called ours - no go. I called the Shopper's down the road - no go. I called the other pharmacy down the road - no go, but that pharmacist atleast had a suggestion, so I followed it. Success at the Preston Medical Pharmacy! Though there was no way we were going to make it to the doctor's office for 2:50.
In the end, we made it by 3:45, including a stop for cat food and to our normal pharmacy to transfer the script over so the next week's dose isn't such an adventure. She was called in almost immediately, and as fate would have it, the nurse who was administering the drug had spinal fusion surgery just last year. She did she'd be the one giving her the needle next week too, so if Avery thinks of any questions, she should just bring them with her.
And as the day ended, my MiL came by to bring Avery a prayer shawl.
T minus 13.