CNY forced family fun.

Year of the tiger.

What did we do before pee pads?  

Can you guess whose is whose?

Cheerios to share.  

Poppy brought her puzzle feeder over to show us all how clever she is.  

Lili joined us today too.  I think she just didn't want to miss any fun.  She says she had laundry to do.  

Luk did the day with no pain meds. He says he's uncomfortable after each flush.  My Chrones issues are somewhat relieving. The boys will both be home from school again next week. Still too much sickness in the school and the principal now has covid too.  

Mother Mother

There were chats today about the logistics of seeing Olivia Rodrigo. Jia said "you know who I'd really like to see?"  So, Jia and I are going to see Mother Mother in Victoria!  We were late to the game.  So we're two rows apart from each other.  There are 12 single tickets left. The debate now is if I sit in front so she can see me or I sit behind so I can see her.  Haha.  She says she'll be worried I'll leave so she'll keep a closer eye on me ;)  Eric said she's probably right because I'll fall asleep.  Love it.  Even I likely can't sleep through rock music.  

Proof

Dill pickles dipped in strawberry yogurt.  Proof that Kai really doesn't have taste buds.  Gag, gag. He loved it.  

A Mood Boost

It took some effort, ok a ton of effort but we got Jia out of the house.  We both got much needed hair cuts.  Did a wee CNY shop. Went to the Thrift store where she picked out a gorgeous blue Chinese dress and this kimono.  I am happy enough for her to present however she chooses but have to admit being thrilled with pretty girl things being purchased.  Quick stop at the bakery and she picked a cookie out and ate it!! That was huge.  Of course we bought cat cookies for the boys too.  Finally to Pings for a dumpling snack and brought home dinner for the family. It was crazy foggy and parts of the drive were uncomfortable but overall it definitely helped moods to be out and about.

Luk is living in the living room and he LOVES the Simpsons (so do I) but the kids have never been allowed to watch them so it's the new thing.  I say every night at snack 'just one episode' but we're usually caught up by three. Last night we took a break and worked on quizzing the multiplication table.  

I have work to do so I'm at my desk and Fei just texted that she's getting her booster today in Duncan and is coming home for a sleepover!  So that's fun.  The puppies will be over the moon.  

Isabel is 12!

Missy had lots of treats yesterday on her Birthday.  It's hard to celebrate her being elderly. 

I had a long call from the ostomy nurse from Children's.  We're setting up an appointment to coincide with his spinal cord clinic appt on Feb 10.  In the meantime we're able to just keep flushing.  I didn't have enough supplies to get past Thursday.  I was told there was a community ostomy nurse.  Now I've been told that's not true.  I called 9 pharmacies and 3 medical supply places. With very little luck.  One pharmacy was able to order saline vials and we picked them up today.  Superstore was the only place in town I could find saline in a half litre.  Minor panic.  We assumed these would by normal supplies! No one has end caps so we're going to have to sterilize the four we have left here.  Children's wanted them changed daily.  

This morning I just ordered 10 litres from Walmart to be delivered.  But that is only a 50 day supply.  I've been told the delivery system we have for Luk's supplies likely has what we need but it will take time to set that up and I'm not certain they have what we need yet.

I'm sure there are easier ways to find supplies we just haven't found it yet.

Also, I was under the impression that the cecostomy had an attachment that was being removed. Then learned yesterday that the whole thing is temporary and in six weeks we're back to have it replaced.  The picture below was sent for me to show Luk.  The cecostomy tube goes into the Cecum.  

New Routines

This sums up the last week.  My Chrones is way out of control right now.  Sigh.  I spent the day with Luk yesterday. He still requires a lot.  This morning I have to find ostomy supplies in Duncan.  I'm realizing now I really should have thought to do that before the surgery.  Perhaps later today I'll get to my desk and catch up with work.  I'm just so tired.  

Luk continues to improve and his pain is less and less.  

I need to attention Jia and her school platform.  She's managing some of it on her own but is stuck on a few things.  

Home

Phew.  

We left Tuesday morning.  It feels like we were gone for weeks.  

This has been soooo much work.

We're both so happy to be home.  Puppies were nuts.  So that was fun.  

Time to relax.  

Dressed and home?

Luk is cleared for home today!  We have to wait for one more meeting with the surgeon before we can leave.  He's in surgery this morning. So times are up in the air.

We have a bag of ostomy supplies to last until Wed.  Giving us three days to figure out ostomy care in Duncan.  It looks super easy to me and they keep asking if I'm OK to do it.  ?  What parent wouldn't be.  I did his flush this morning.  

Luk is moving better and better.  He says he can feel his strength coming back.  I think adding advil has made a big difference. His pain is a 2 and only a 1 when he is walking.  Yet he doesn't want to get to walking because the transitions to walking and sitting are a 3 or 4.  His spirits are much improved today.  

We're up, cleaned and dressed.  Breakfast is done.  I've packed our bags.  Phones are charged.  We're ready!!  Although I still don't know how to get him in the car ;)  

Update: we're lined up for the 12:45 to Duke Point.  We borrowed a wheelchair and step stool to get Luk to and into the car.  Easy peasy.  I did have to leave him alone for 3 minutes while I ran them back in.  

Home in a few hours.  Yay.  

Lili and Fei Decorated

Ready for Chinese New Year.

Yay.  One less thing for me to fuss about.  Love it.  They did such a great job.  They said it took them too long but it really sounded like they had a good time.

Fei was able to help Jia with some homework.  She attentioned the puppies and let the girls sleep with her. Eric said they all went nuts when she came home.  

Jia has been doing great at communicating by email with all her new teachers.

They video called me so I got to wave to Jia and Kai.  Kai and Luk got to wave to each other. They were both grinning.  

We'll need a plan for how to keep Kai off/away from Luk.  He won't understand to be gentle.  Luk also won't be able to climb up to his bunk and possibly not the stairs quite yet.  

The plan right now is still to go home tomorrow.  

He was finally hungry again and ate all his dinner.  Butter chicken again. 

A Hallway Stroll

He went to the other end and back and grabbed a popsicle when we went by.  

Earned!!

He was a bit dizzy but says he's glad he walked.  It wasn't as bad as he thought it would be and once he was back in bed it calmed down quickly.  

I mentioned to Eric that there families with kids in the news waiting years for surgeries and the beds really are full and I feel bad being here using one unnecessarily, we did wait three years but we weren't full of angst or pain. Eric thought I should tell that to Luk.  I didn't think it would have impact but it did!!  Sweet boy.  Said after his walk that maybe we can go home tomorrow and someone else can have their surgery.  

Saturday

This is my corner.  The light doesn't work.  The couch is extremely uncomfortable.  There isn't any privacy and I can see into all of the rooms across the way. But, I live here now.  

The weekend on call surgeon was in this morning and then joined by the surgeon that performed the surgery.  Both lovely and kind.  Luk is done being polite, or talking.  So getting him to advocate for himself is over.  

We were told it's clear he won't be going home today.  They're adding aspirin in case there is actual pain the Tylenol isn't helping.  Dr's agree with me that he's likely not moving to avoid unfamiliar sensations.  It's been explained by me, Eric, several nurses and three Dr's that he has to move and poop to get out of here.  He has to poop to feel hungry. He has to eat more to poop and get energy to move.  It's a circle.  He's clearly sad today.  Upset with all of us.  

The bag is off. He's vitals are fabulous.  He's cleared for movement and is allowed to sleep through the night without vital checks.

Luk says he'll move when it stops hurting.  That might be weeks.  He has to power through some discomfort.  This one is super, super hard for me.  Pain to me is a 10 that is acute.  Luk is refusing to move at a 3.  At a three I'm out with friends, doing life, chores and exercising.  So our dynamics here are me with a very high pain tolerance, chronic daily painful disease and Luk with the lowest pain threshold I've ever seen.  It's not making for great understanding between us.  

Eric has offered to come get him. If we don't get anywhere today this might have to be a step we seriously consider.  

Our new daytime weekend nurse is great.  She's no nonsense.  My style.  No negotiations, no allowing the Diva to rule.  He tried telling/dictating to her how to administer his liquid meds and she rolled her eyes, handed him the syringe and told him he could do it himself.  Love it. He did it.  Then she told him 15 mins for meds to work then up for a walk. She also called for physical therapy to come help get him up and moving.  

I got him bathed and in a new gown.  He barely ate breakfast and doesn't want lunch.  

I found a show to watch on Prime. As We See It.  It's keeping me entertained.  So many interruptions that I stop and start each episode at least 4 times.  Very busy here doing very little in our room.  

I would love to be going home but we're ok here and it just is what it is.  

Weird reading the news and seeing kids not getting treatment and cancelations like crazy.  The beds really are full on Luk's ward. Bizarre luck that Luk got his surgery. Also that parking is a big issue in the news here and they are bringing pay parking back.  Who would have thought I'd be happyish about that ;)

Luk pooped!!  Only one hurdle left.  He needs to be ambulatory.  

I took myself out to the car for more Luk supplies and then checked out the other coffee shop.  I told the guy I wanted something cold and chocolate.  He gave me a FroCho.  Yum.  Ice, milk, chocolate syrup.  Score.  A wee bit of self care.  Eric called and we chatted while I sat in a secluded hallway.  Luk still isn't hungry and he didn't even want to try my FroCho!!

Next Report

He's crying in his sleep.  OMG.  That's hard.  His pain meds were due and his pain shot from a 3 to a five with tears so he got his next dose a few minutes early.  He's now on straight Tylenol.  We haven't used liquid Tylenol for years so Eric is stocking up.  

Now, we're having a care team switch for the weekend. And it's up to ME when Luk goes home.  I'm uncomfortable with that.  Haha.  What the heck do I know.  So we discussed goals to meet.  Primarily Luk walking and moving.  Right now he's laying down and refusing to move or scooch or sit or lay on his side.  Any and all movement is a no go.

So we're here until I can picture how to realistically get him to the car, in the car, with a seat belt and on the ferry.   

I dozed off while Luk was napping, it's dim in the room, he wanted the lights off.  I woke up with a nurse hanging over me to tell me about his night time pill.  Sigh.  It will definitely be a long night here.  I'm now in bare feet and have my nightie over pants.  Luk was awake for a while, didn't eat and has fallen asleep but I think they'll wake him soon for the pill.  Let the hospital nighttime marathon begin.

Reports

He did get some sleep.  Nothing eventful happened through the night.

I had a great sleep.  Totally crashed.  Up at 5:30, showered, packed and checked out.  I was here at 7.

We ordered his breakfast he had a check up with his nurse and a student nurse.  Same nurse as yesterday so that's great.  He did stand by the side of the bed but was dizzy, had nausea and was in pain so he's back in bed.

The original surgeon came in today, he did talk to the performing surgeon this morning.  All went well. He says Luk looks good.  The site is good.  The bag can likely come off later today or tomorrow.  He's moving him back onto his Peg (miralax) tonight.  All normal activity can resume.  The iv can come off today.  They are going to teach me today how to flush his new tube.  He won't be using it as intended for at least 10 days. And lastly, we're here for a few more days.  

Wish I'd packed more undies and perhaps hadn't checked out of the hotel so quick.  

He's in O.R.

We came early and scored 2nd best parking spot here.  Then sat in the car listening to the radio.

Checked into a picu room for the hour and a half pre-op.

The numbing gel didn't really work and we had a failed needle attempt by the assistant anesthesiologist.  He wasn't thrilled.

Breaking my heart here. Nerves getting the best of him for a bit.

Attempting to warm him up.  This floor is crazy cold.  The O.R. was freezing.  I have no idea why.

Seconds away from being wheeled to surgery.

He was sooo brave.  The 

anesthesiologist got the needle in super fast.  There were tears.  I barely held it together. The meds went in and he was asleep in seconds.  The surgeon isn't the one we met online.  New guy seemed nice, Dr Ho. 

We met lots of people and answered tons of questions.  Over and over again.  He was so patient.  Until the end when the last one to go through the safety protocols added the question not previously asked "does he have any make up on".  He glared at her and said "I   DO    NOT    WEAR    MAKEUP!".  

I got to stay with him until he was out.  The O.R. was amazing.  Unlike anything I've ever seen in life or on TV.  

Awake!!!!  

Procedure was an hour.  I had time to go the washroom and cry for a bit then go get lunch from Starbucks.  

There was another Mom in the bathroom bawling.  Solidarity.  What a bizarre world Children's is.  

Luk is doing great!  He looks good.  Everyone is shocked at how calm he is.  He's in pain.  They've given him all they can.  We're settling him into the hospital and changing care teams. They're off discussing orders and pain protocol.  He has a bag and we weren't expecting that.  I haven't had a debrief from the surgeon yet.  So many questions now.  The hard part is done!  Luk keeps asking if he's done :) He seems shocked that it's all over but understandably dismayed at the bag.

Settling in.  He ordered butter chicken for dinner.  Really good spirits now that the pain meds are helping.  He's watching the Simpsons.  Haha.  Normally not allowed but we watched it together in the hotel two nights in a row.  Might become a favorite.  

The pain got quite a bit worse around 5. We had no clue of he had gas from the surgery, had eaten too much too fast or had actual surgical site pain.  Luk isn't familiar with pain and he is paralyzed so that complicates things. Some morphine and an extra dose of Tylenol took the edge off.  Phew.  

Jia called and had him laughing too hard.  Laughing hurts.  

It was a super long day.  He was settled for bed at 8:30.  I thought he was asleep and I was slipping out but he waved and said 'night mom, love you, see you in the morning'.  Sigh.  Such a sweet kid. 

I'm at the hotel, stopped by Tim's drive through for a late dinner.  Hoping to get some sleep.  The plan is to head back early morning and just stay there until we get to go home.  Be that a day or a week?  It's extremely uncomfortable there but leaving him there was also super uncomfortable.  

Ikea

Fancy breakfast.

The parking lot was empty. We figured out quickly that's because the shelves are largely empty. There are announcements every few minutes alternating between keep a safe distance from others and we're experiencing supply chain issues.  I overheard a few conversations and staff are repeatedly saying that will likely be six to seven weeks, thanks for trying.

Lunch was fabulous.

We found tigers.  Our eyes are peeled for Chinese New Year. 

I bought sheets for Eric and I.  Everything else on my list was unavailable.  Disappointing.  It was too much walking for Luk.

Luk chose A & W for dinner.  We're back and settled for the night.  We did get our call from Children's at 3.  He's to be there at 10 to prep.  Procedure at 11:30.  I get to be with him until he's asleep.  The surgeon will come talk to me afterwards and I will then go to recovery with him.  Then he will be admitted.  It will be a long day.  Also...she warned the parking is a nightmare.  They stopped payment for parking re covid and now city workers park there and take the bus in.  As much as I hate paying for parking perhaps it was better to at least get spots.