No need to be concerned about why I am writing another blog post. As her bestie, I lightly offered a little break from worrying about writing every day for a couple days if she needed or wanted. This could be today only, or three days, or a week. It’s entirely up to her. She is so strong and brave, and very deserving of more time to focus on herself, her relationship with God, and of course, her family. Please keep praying for her, and all of them. Not out of worry, but out of love.
I just wanted to share a little bit about what I have been learning about, and what Hailey and I have been discussing: the true nature of God. It is so hard for us to fully understand how dear we are to him. It’s easy to think we know when we don’t TRULY know. I was listening to someone the other day (Andrew Wommack) and he explained it like this: Say you were at Best Buy and you were in line to purchase a new speaker. Then, when you get to the front of the line, Jesus takes out his wallet and says to the cashier “I’ve got this, please put it on my card.” But many of us still feel like we owe. We go home, and we think “I still need to pay”, so we get on the phone and call the store and get them to send us monthly bills so we can purchase it a second time. Doesn’t that seem totally redundant? Jesus was HAPPY to pay for that gift. We never have to pay a second time for what he already paid for. We are totally free of debt (sin) in his eyes. That doesn’t mean He won’t show us where we have gone wrong, but that we are already forgiven. We must accept this payment and TRUST Jesus with our lives. What a beautiful feeling. “Jesus didn’t suffer any sorrow or grief for His own sins or mistakes. All of Jesus’ suffering was substitutionary for us.”
I hope all of you have a really wonderful day, and remember how loved you are.
We are three weeks into this new world of spinal cord injury. We are learning so much information, and so quickly, but I can safely say for both Brady and I that he is in an amazing environment with a spectacular therapy team! We are SO grateful for his people on the rehab ward in City Hospital.
Yesterday, I told you about Brady’s chaotic nosebleed. Its under control at the moment, but the doctors want the packing to stay in for 48 hours :/ And since it needs to be removed when a hematologist is on site, it will be even after 48 hours that its taken out. Tomorrow morning, hopefully before therapies. Its ok, though, he’s still super cute even with it on!
His funny grumpy face is a determined face, if you weren’t sure, haha! He redid the outer part of the dressing by himself!
Also yesterday, I mentioned that Brady had an important meeting. I was able to join, thankfully, so he and I met with the overseeing doctor, a resident, both PTs, the OT, the director, and our social worker. So everyone basically presented their findings on Brady’s progress in the rehabilitation program. What he had accomplished already, goals he had made, plans that were in place, etc. We talked about his upcoming home visit with the community OT. We talked about his blood clot scare on the weekend. They opened the floor up for us to ask questions, which I wish I had known would happen ahead of time. We both stammered and couldn’t think of anything, but of course I have questions now! In the moment, though, our social worker commented that I was at the hospital often enough that I could ask questions anytime. I sheepishly apologized, and everyone in the room reassured me that it was SO GOOD that I was there as often as I was. That felt really, really good. Its very clear that Brady’s team wants him to be happy and healthy, and they recognize that its necessary for him that his family is well, too.
The meeting boiled down talking about hypothetical timelines for Brady coming home. I’m not going to broadcast them, because there are just FAR too many unknowns, but we got our “moving target” dates from the team, and then a really nice honest conversation with some of our therapists afterwards that was just SO encouraging on the subject. Homelife might look really different in the future but I eagerly anticipate it!
I have a date tomorrow 💜 Brady is cooking us lunch. I am SO looking forward to it!
Since Brady’s (ready?) pulmonary embolism (gag me) the other day, he’s started on a strong dose of an anticoagulant to help him hopefully NOT make any more clots. Which makes total sense.
But its also a total bummer when you live where you live, and winter dryness gets ya and you get a nosebleed.
So. This sucker bled for about 45 minutes. Brady figures he has about 2′ of cotton ribbon, soaked in lidocaine stuffed up his nose. Finally a hematologist had to come to his rescue. We are grateful and frustrated, both, equally.
Brady had the pleasure of sleeping with this packing on his face, waking up every hour with dry mouth. We talked at 7:00 and he told me he was very eager to get it all undone. The nurses asked him to wait for the doctors and residents to do their rounds so they’d be more prepared if it started bleeding again, but then the doctor on the ward decided Brady should keep the packing for 24 hours. Which is HARD, because Brady has a really full day today, and he has this whole mess plugging up his nose.
I feel for him. I know this is small potatoes in a lot of ways, but goodness, its just a frustrating thing to add to Brady’s growing list of things he doesn’t want to have to fuss with.
Yet, if you ask Brady, he’ll say the hardest part was not getting peanut butter on his bandages at breakfast.
This afternoon holds an important meeting for Brady, myself, and his entire rehab team. We will discuss progress, goals, and hypothetical future discharge dates.
Please keep him in your prayers. This is not easy, and it is not over. Not even close.
Its important to update some improvement. I can’t state anything in a big concrete way, but it feels important to note some changes. Positive changes!
Rowan has been on Melatonin for a few months now. Not quite three, I guess. It was SO good for a bit, and then it wasn’t anymore. We added magnesium, which takes some time to build, but we didn’t see anything negative come from it, anyway. A couple of weeks ago, we added a couple of things. We added omega 3s, probiotics, and vitamin D. And guys, slowly but surely, Rowan is changing.
The best, shortest way I can say it is that Rowan still grumps a lot, but he is talk-down-able. He hasn’t screamed or had a good, big meltdown in a while, and for that I am SO grateful!!! He is more rational, and of all times for him to get MORE rational, I am truly thankful it it now!
Rowan is doing surprisingly well for the amount of stress going on in our family. He’s growing and changing 🙂 He got a haircut, as you may know, and he sat beautifully through the whole thing. He was SO happy with the outcome. He’s also losing teeth, and even had me pull one (barf) that took more than one swift yank, and he didn’t yell or back out. It was so impressive! Meanwhile, I’m getting positive reports from his teacher at school, and he’s doing better at home.
All around, I am SO grateful to God that Rowan’s seeming to have his feet a bit more under him these days.
So much progress. Such an amazing boy. Goodness, I’m proud of you, Rowan!
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!
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..
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.
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!!!!!
We both wore Office shirts today!
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!
