So. Brady had some excitement yesterday. It was pretty rattling, but he’s ok now, and everything is back to being under control. 

Brady informed me at 7:00am that he had been up since 3:00am. He had woken up with some cramping in his back and shoulders. That hasn’t been uncommon with the amount of work he’s putting his muscles through, so he buzzed for a nurse and asked for ice and Tylenol. Same as usual. As his back pain started to lift, there was increasing pain in the left side of his ribs, and it was starting to take his breath away. He could not take a full breath. So he rang for help. 

He spent all of the next few hours speaking to nurses, the resident, getting blood drawn and having an EKG. He wasn’t allowed to get out of bed anymore, but they sat him up, and that helped him breathe a little easier. 

Then his bloodwork came back. His D-dimer level came back in the thousands, which tipped everyone off that he very likely had a blood clot issue. He’s been on anticoagulants since his surgery, but upon changing hospitals, was informed that he was being grossly underdosed at RUH. Regardless of when or why, he very likely had a clot that needed attention. 

Brady was referred for an emergency contrast CT scan the moment they opened, and they were on their way up to retrieve him within ten minutes. 

He’s about to be hauled away in this picture. And yes, that is Brady’s bed urinal on his lap. Which is vulnerable and maybe a little awkward, but simply a necessity when you’re not allowed to leave your bed. It was just there, and its our only picture. Too bad! 🤷‍♀️  I was going to blur it or put an emoji over it or something, but something tells me that would’ve made it SO much worse! Hahaha!

Luckily, the CT was a quick test, and he was back in time to eat his breakfast and get ready for the day. 

The results didn’t take long to come back. Just as expected, Brady had a clot in his right foot rattle loose, pump THROUGH HIS HEART, and settle in his left lung. 🤮 HORRIFYING. They noted a large number of smaller “speck” clots in the lining of his lungs, also. This is obviously concerning, while being treatable. Brady has been given a big fat dose of an anticoagulant and will carry it forward twice a day for about a week, and then carry forward with a lower dose of the same medication for a longer term. Three months ish. I’m assuming they’ll follow this up with at least more bloodwork, but his pain should subside and he should be good to go with regular activity. 

Its hard to have a setback. I know, that sounds completely naive, because of COURSE we’ll have setbacks. This is the FIRST one, and its been SUCH a successful recovery! I won’t lie and say it wasn’t a completely frightening whirlwind of a morning, and of course it happened on the day I wasn’t there, but things are under control for the moment, and Brady will be watched pretty closely for at least the next week or so. 

Today already was better.

The ward was so quiet. We played cards, listened to music, chatted, got his IV port out, and even did his leg stim.

Have I even talked about that yet?? Yikes. SO many things to keep track of. 🙃 Its an electric stimulator that he puts in specific spots on his legs that works the muscles he can’t seem to work himself. Its really cool to watch it work, actually! LOTS of hope still that he’ll regain even just some of that strength!

That handsome smile though 😍 I’m a big fan.

Cher here with a little gallery of the past couple days. I just wanted to take a little time to write about Hailey since she writes about everyone else. Of course I am going to keep it light because there are a million things I could say, but I will just say this: As rough as she has it, I have no idea how I would ever have the strength this amazing woman possesses. She is completely trusting God through this journey. Her and her family’s prayers have only gotten deeper and more honest.

Her and Brady still do devotions with the kids every night.

Even though it isn’t ideal…

Family is the more important thing, no matter how it looks.

The influence a mother has on her children is life long.

Things are really scary, and sometimes it’s hard to do the mundane things..

Some days she has no idea how she is going to do it…

but she still gets it done…

while still being someone to look up to.

Someone who raises independent, intelligent littles..

Someone who can still bloom in a forest fire.

As of yesterday, the plan was for an occupational therapist to come by today and measure the house up a bit to see what Brady’s future needs might be. This morning, however, I received a call cancelling the visit for today. He had spoken to Brady’s OT at the hospital, and she had insisted that Brady attend the home visit, one way or another. Therefore, the visit has been rescheduled to next week, and a whole lift is coming along so Brady can be inside his own house!! Praise the Lord for technology and professionals that advocate for what is actually truly best!

It was a successful morning for Brady. In PT, they played with electrodes and found some hope in that right shin of his! With enough tweaking and repositioning of the electrodes, the toes on Brady’s right foot DO lift! His foot CAN move independent from his thigh! These are hopeful things that suggest some nerves are still firing in there, so Brady was able to borrow/sign out the machine they used, and he will use it 2-3 times per day in hopes to wake those muscles and nerves as much as possible. His PT did say that brought on some promise. (I hope I understood that all correctly, so take it with a grain of salt if I’m a bit off base.)

After that particular test, Brady moved over to the sit/stand machine and practiced controlled stands and squats. He swayed with his therapist, like middle schoolers dancing, putting weight on each leg individually, trying to trust his legs a bit more. Unlocking his knees is the most wobbly part of it all, but his PT today reminded him to push more with his feet and less with his arms, and it was incredible to see how much smoother it got from there. Brady did these things while occasionally trying to close his eyes, and even managed to stand while only holding on with one hand. AMAAAZING progress!

Two different professionals told Brady today that he will not be in the program long. I hope they’re right. No one wants to rush him, and we deeply desire him to stay for as long as he needs rather than having to bring him back after pushing him too early. But my goodness, everyone is SO proud of him!!

Yesterday marked two weeks since Brady’s (ready?) laminectomy and tumour resection. I’d like to tell you where he stands (ha!) today.

Mostly, between parallel bars.

(Yes, a lot of bum cupping goes on in therapy.)

Seriously though, let’s talk about where he’s at.

Here. He’s at City Hospital.

With his guitar, clothes, gifts, books, electronics, products, and even his own coffee maker! Aaaaand more coffee when I bring it, which is almost every day I’m able to be there, thanks to all the coffee gift cards we’ve been given!

Ok, I’m actually done now. My mental energy has effectively emptied for the day. Jokes are drier than ever.

Actual updates for Brady are as follows!

Brady is OFF the bladder scanner, the commode chair, and nighttime wakeups/vital checks. He is wowing the people around him, having only been in the rehabilitation program for just over a week. He has made friends with the woman who cleans his room, and he is on beautiful terms with all of the nurses. The vibe in his rehab program is really encouraging.

Brady is independent in his wheelchair. He’s insistent on doing everything himself that he can, getting in and out of it smoothly, and he’s adapting things as he needs. He removed the armrests because they were cramping his style, and hooks his transfer belt over the backrest.

Brady has OT (occupational therapy) and PT (physical therapy.) I had the pleasure of attending both today! I hadn’t had the chance to meet his OT yet, but she was very warm and nice. She challenged him to cook himself something while she and I went and talked bathroom modifications. Brady made some basic fried eggs and toast, from his chair, in a kitchen with countertops the height of ours at home. It was encouraging! He is being asked to go a bit more elaborate next week 🙂 His OT suggested he cook he and I lunch. We just have to get her a grocery list. What should he make?

PT is always a good workout. Today, Brady did some more sensitivity tests. So far, there are only two muscle groups that just refuse to wake up, along his right shin bone, and those are responsible for his right ankle/foot. That sucker just flops. But in speaking with the doctor overseeing his rehab, she has decided he’ll go to a casting clinic on Monday and get fitted for a custom AFO (ankle foot orthosis) brace. When he has tried on the ones they have available, while they aren’t a perfect fit, they do make his steps SO much smoother. So thats an exciting thing to look forward to!

Brady does stands with bars beside or in front of him. In front is harder, but he does it! He worked on a modified exercise bike today and walked about half a mile in 6 minutes. His legs did that!!! He also works his upper half actively in the gym. He’s gonna be YUGE! 🙌

This morning, Brady had gym time, OT, and PT, one after the other. His right ankle was a little swollen at the end of it all, which was important to note but not concerning in a big way. Its important to keep an eye out for stuff like that because, while Brady can’t feel that ankle, he can still injure it, obviously. His PTs suggested he elevate it, which is extra fun since he got his bizarre new boot!!

This…..

Is to prevent this.

It looks a little crazy, but they really want to train his muscles to keep that foot straight. Besides the little triangular block on the side of the boot to keep his foot straight, it also elevates. So, win! He slept with it last night without issue, so there’s that!

Tomorrow, a community OT is coming to our house to do some measurements and report them back to Brady’s City Hospital OT so they can better judge what his needs will be. This is both exciting and discouraging. Originally, the plan was for Brady to come for his home visit with his current OT. However, because we live outside of Saskatoon, it had to be referred onto a different OT group, and as the OT will be in the area tomorrow already, he’s eager to come. It makes sense, and he said this will not be the only home visit, so I guess we’ll try to catch Brady with the next one. Its too bad, but getting the ball rolling is never all the way bad. We keep hearing that Brady is an incredibly quick study, and while we’re not holding our breath, it would be completely amazing for his program not to stretch out any further than necessary.

ALL of this being said, we’re all so eager for Brady’s legs to come back to him that we keep forgetting that Brady had MAJOR surgery just TWO WEEKS AGO!!! His staples are out and his incision looks amazing. No stretching or separating or infection. But of course there is still inflammation. Brady’s back muscles get sore, as you’d expect, but he is one determined man. I haven’t heard him turn down a PT request yet! I am SO proud of him!

As I sat beside him after lunch, snuggled up, all teary and messy, a lovely woman came in to collect his tray and stopped to look at us.

“Aaawww,” she said. “You guys are SO in love!”

She couldn’t be more right.

Ok, friends. Be ready. We’re going to talk about bathroom stuff today. I AM allowed to discuss this all, yes. I have Brady’s full permission. And I’m also a classy enough lady that I won’t steal his dignity. The reality of the situation is that NO ONE talks about bathroom stuff after surgery, and its important!

If you’ve part of this for a LONG time, you’ll know that Brady has been struggling to pee for months. If he really has to, its easy enough, but when he just wants to fully empty his bladder before bed, or something along those lines, it could take around 45 minutes of focus to make it happen. It only got worse over time.

Since Brady’s surgery, as you know, he has limited sensation below his ribcage. This, paired with the need for a catheter for the first stretch, has not helped the pee journey.

When Brady left RUH and went to City Hospital, they got rid of the catheter and helped him through the steps of being able to use the bathroom independently. Now, this is where I hesitate about details, because I don’t want to overshare, but I also feel like people have no clue what all goes on. So I’m going to talk about things, but not in crazy personal detail to Brady. Fair? Yes.

So there is a “bed urinal” which means about what you can imagine. Its awkward but it gives the opportunity to sit and wait, and be independent from a catheter. When a person uses that, its usually followed up by a bladder scanner to see if the bladder is retaining any urine, and if so, how much. That has been his system for a while.

Along with this, there is the commode chair, which is about as glamorous as it the bed urinal. Its basically a beefy plastic chair you might find stacked up in a school, but it has arm rests, and a big hole cut in the seat. Its an easier method of getting a patient to the toilet when they still need some assistance. Its vulnerable and awkward, but it works. At RUH, it took a whole lift to get Brady on the commode chair, but he was able to transfer himself on and off of it in the recent future.

Today, he was FINALLY able to get from his wheelchair to the toilet, and back again. This is a HUGE victory!!! Besides all of that, he has regained enough sensation to know better when he has to pee, and he is retaining next to nothing. He is officially DONE with the bladder scanner.

I know this is all “personal” information, but its kind of huge in the recovery game, so we’re happy to share it. Brady pees easier now than he did before his surgery! This is VICTORIOUS!!!!!

The rest of the bathroom stuff is less exciting to talk about. Bradys pain meds are a friend to his back but not to his bowels. One day, that will be a lot more independent too, but for now, he needs some help, and thats ok. The fact that he can get to the bathroom and take care of everything in there on his own is a gigantic saving grace in terms of dignity and independence.

HUGE congratulations to Brady for needing to pee, and being able to do it! Man, the things we get excited about now 😂 Bunch of old folks, I guess!!

Amidst ALL of the crazy over at our home, Rowan’s birthday is today!!! Even if you exclude what we are currently dealing with – Brady being on an extended hospital stay – the year has still been HUGE!

We did the covid thing! We built a camper! He rode a bike! He started kindergarten! He lost teeth!

He even… *gasp*

GOT A HAIRCUT!!!

Yes, friends, it FINALLY happened!! He was ready 🙂 This morning, be brought me the brush to ask for help with his hair for school, and the second before he handed it to me, he laughed maniacally, realizing those days were kind of over for now! No more braids for you, mister!

This child is a picture of overcoming hard things. He has struggles, and the way our lives have rolled in the recent past have not made things easier, but his effort has not ceased. His heart is HUGE and warm and just SO BEAUTIFUL. You’d have to see it to believe it, but you can trust me.

I love you dearly, beautiful Rowan. I believe you were meant to be mine and I was meant to be your mom, despite our challenges together! I am SO excited for the year to come, and for the strides we’ll make! You are exceptional! I hope you can feel how loved you are by so many!

Nine? 😬 I don’t even know. I think its nine, so I’m going with it.

Here’s the thing. I skipped Melatonin Monday last week and I don’t have big updates this week either. This isn’t because Rowan has been cast to the side. Its because his behaviour and struggles have changed greatly due to the situation of our family dynamic.

What I can tell you is that Rowan has good days and bad days. Its a hard thing to judge. His bad days seem BAD, but I don’t know if they’re worse than usual, or if I just have a lower tolerance. I’m not sure. We still always close the night off warm and soft and loving, in prayer together.

That being said, Rowan sleepwalks regularly, and while I know he’s safe and cared for, to me it indicates that he is still struggling, even subconsciously.

Last night, for the first time, Rowan walked in his sleep twice. The first time, he knocked on the door, but then didn’t answer when I called to him. He was sitting on the landing by my room, and couldn’t really articulate anything. I started to slowly get him back to his room, and he tripped on the stairs and got really scared. I was holding onto him, so he was safe, but he was scared. I don’t think he woke up, though. I got him back into bed no problem.

Later on, less than five minutes after the lights were out for the night, he knocked again. He was standing all crooked outside the door, whimpering that his legs hurt, and were numb, and that he couldn’t walk. It doesn’t take a genius to read that as exactly what it is. Poor, anxious Rowan. As usual, he was easy to take back to bed, I prayed for him, and he stayed put for the rest of the night.

We will continue working for Rowan’s health and wellness, but if I skip a week here or there, its not because I’m too busy to care about him. Its just hard to know whats what right now.

Thank you for your continued overwhelming support.

Today is my first day completely apart from Brady. There are details to work out this week, and the uncertainty is hard. At Royal University Hospital, I could visit Brady every day. He was only allowed one visitor, one visit, every day, but it was still every day. At City Hospital, in the rehabilitation program, they are only allowed one visitor twice a week. Its a little bit shattering. So after being together Friday and Saturday, we opted to not see each other today. Or tomorrow. Ugh. However, tomorrow Brady will meet our social worker (I guess everyone in this program gets one) and he can advocate for more time together, which he absolutely plans on doing. After that, we’ll have a better idea of how our weeks might look. 

I had a pretty crumbly evening yesterday. I cried a lot. I was SO beat. I followed the evening up with a subpar sleep and was in no shape to do the day when the time came. Cher lovingly got the kids breakfast and played with them so I could rest extra long in bed, and even brought me some coffee and food. I got to FaceTime with Brady, and some kids popped up a couple of times to say hi to daddy. Hamilton played over the Echo and the kids had good attitudes. 

My mom arrived shortly before lunch, with strawberries in hand. She cut them up and we had a delicious lunch of leftover chicken noodle soup and fresh buns alongside. Meanwhile, as the kids ate, two more meals walked through my front door. 

As lunch wrapped up, kids were put down for naps. Poor Wavy is struggling a little extra with the lack of normal, and we had a GOOD slumpy dead weight kind of snuggle before her nap. I feel so disconnected in some ways, but I’m trying to help the kids still have some continuity. Its a real challenge. 

As the younger ones were tucked in, a bath was run for me, bubbles poured, candles lit, and the big kids are now on a walk so I can fully rest. 

And rest I will do. Excuse me, please. My bath is waiting. 

Must. Cope. 

Thank you for giving me grace on yesterday’s lacking blog. A good cry is both cleansing and exhausting. I’m still completely beside myself from yesterdays exhaustion, with some fresh added on top.

But, let’s begin.

Yesterday was actually a good day. I was able to spend an hour with Brady, just hanging out, before I was able to attend his first physical therapy session with him at City Hospital. It was very interesting to see a full hour assessment, what he could do, what he couldn’t quite do, and what where they wanted to start. Lots and lots of mobility and sensitivity tests. It was interesting for all of us to see Brady tryyy to make things happen, and while they wouldn’t all be successful, it was clear a lot of the right muscles were waking up. They anticipated only real tests, maybe some sits or stands, but ended up in the gym, on exercise machines, walking between the parallel bars again. I’d have taken video but I was there too, closely following behind with his chair, just in case. Brady was able to do a few controlled squats even before sitting down fully in his chair. HUGE success. He was red and sweaty and happy. One of the therapists kept asking him if he’d had enough, and I could see the twinkle in her eye when she said she didn’t think he would tell her. She might be right.

Thankfully, the day ended with Brady having some good sore happily worked muscles, and I’m happy to report he isn’t sore today at all! So he didn’t even overdo it! Woot!

At the end of the afternoon, I learned that someone had graciously purchased us a month long parking pass. That saves me a LOT of dollars! Thank you, friend.

I came home, ate good food with my family, dropped off by a friend who took my laundry along with her, and then I proceeded to have a big ugly gigantic cry in my bathtub. A hard end to a hard day in a series of the hardest days of our lives.

***

Today, being a weekend, is a day without any therapies for Brady. We snuggled up on his bed together and snuggled, chatted about the days before and the days to come. We looked at pictures and talked about things he might need while he staying at the hospital. After about an hour, we took him out of the ward in search of vending machines and the basement cafe. Not because anyone needed anything, but just to know what his options are in terms of outings and treats, if the ones I bring him run out. It was fun to go on an adventure together, as small as it may have been.

I sat with him while he had his lunch, and then said goodbye. And then bawled all the way home. Because, routine, lol!

The times are hard, but the days themselves are good. Adrenaline pumps and pumps, and I bawl when I get home. I am SO grateful that Brady is so comfy and settled where he is. I just wish he were home with us.

Friends, I have hit a wall. I’m sorry to say, you will have to hear all about today tomorrow.

It was a good day. I have very little bad to say about it. Except the whole reality of everything that is happening. Today we were fed delicious food, our laundry was done by a friend, we were gifted a parking pass at the hospital, I came back in contact with someone I really care about from a couple of years ago, and we even hit some cool milestones with the kids. It was all around a good day.

However.

My mental, emotional, and physical energy is tapped out. I just had a BIG cry in my bathtub, panicked a little, and now I’m taking my overheated body to bed for the rest of the evening.

I’m sorry there are no amazing updates today. I will share so much more tomorrow. I promise.