Showing posts with label worrying. Show all posts
Showing posts with label worrying. Show all posts

Wednesday, February 4, 2015

Countdown to Number Six

One week from now, Kingsley will be in surgery for the sixth time.

The big M&M.

I'm having a lot of trouble with this one. Like the tendon release surgery last year, this is elective. It's our choice. His life does not depend on this . It falls under the category of "quality of life", as in, we hope to improve Kingsley's by doing this surgery. This massive, long, complicated surgery.

Also like the last surgery, we have had a lot of time to plan this one. To sit and ruminate. To think of all the things that could happen. All of the things that could go wrong. So, I've had a headache for about a week that just quietly throbs behind my eyes. In a way, it's like when I was pregnant with him and just had to act normally while inside it was the one, single thought always in my head: the countdown.

One week.

Seven days.

Actually, less than seven. We go into the hospital on Tuesday so that Kingsley can be prepped in advance, which I hear is quite unpleasant.

I have five and a half days to finalize all of the childcare arrangements for the girls, clean my house from top to bottom, pack for him, pack for me, spend as much time with the girls as I can, and somehow get Kingsley ready for what is about to happen to him.

Kingsley knows he's having surgery, he knows what the outcome is going to be. He's not altogether impressed with the idea, but he knows that I will be with him the whole time and I will make sure that he's not in pain. He knows about the drains, though I'm sure he has no idea what that actually means. Sometimes it's hard for kids to wrap their head around these things. And adults, sometimes it's hard for adults to wrap their head around these things.

My biggest (okay, second biggest. Maybe third.) fear right now is that the surgery will be cancelled. That all of this anxiety and planning and preparation will be for nothing. I want to put Kingsley in a bubble and protect him from any germs. Then I want to fast forward to about 3 days post op and have everything healing smoothly.

Breathe....

Thursday, December 12, 2013

Duck and Cover

I am so overwhelmed by SB right now that the last thing I feel like doing after the children go to bed is writing about it or thinking about it in any capacity. I feel stuck in a constant state of loathing for SB and all of the baggage that comes with it. But for the sake of documenting this little chaotic phase of my life, here is what we're dealing with. 

The Ugly: Yeah, that stuff. We're onto the next phase. I kind of thought, 'hey, we'll start this next procedure and it will work (or not) and that will be it.' Nope. It takes a lot of trial and error and tweaking and adding, subtracting, adjusting. Ugh. I'm so over it. More than anything, I wish I wasn't flying solo on this. I wish there was some professional here who knew about these things and could support and advise us. The first couple of weeks I felt quite desperate and flailing, like walking around blindfolded. Fortunately, my SB peeps have pulled through and I've tapped into the underground world of Moms Like Me who are willing to talk about the unmentionable stuff. Thank God

Speech: King is in speech therapy again. He flips his she/he, her/him all the time. At first it was awkwardly funny when he'd call a man 'she' or a woman 'he', but now it's downright frustrating. We're also working on F and the elusive K sounds. 


Food: I just finished an OT feeding group where I spent two hours a week trying to figure out how to get Kingsley to eat. I swear, my life revolves around getting things in one end and out the other. He hasn't gained weight in the last year, has barely grown. I need him to eat more and eat something other than cheese. It would be nice if he would voluntarily eat it as well. You know that saying 'kids won't starve themselves'? It's not true. For real, that's part of what I learnt. Kingsley falls into the small percentage of children who just doesn't want to eat a lot of the time. There's a long history about why, but I'm so tired of thinking about it. Long story short, he is making some gains here. I think I've managed to boost his caloric intake and he is getting more brave about trying new foods, and food in general. Yay!

Fine Motor: Kinger is also doing his own OT group, this one for fine motor school-related things like colouring and cutting. It's aptly named 'Cut and Colour'. He's doing great with it. For some reason, he is incredibly interested in doing both when in a small group. Not remotely interested at home. Ah well. Maybe that means he'll do it at school next year. 

Sports: This hasn't happened yet, but I've enrolled him in an amazing program called Making Waves. Starting in January he will have 1:1 swimming lesson, which is awesome. We've also borrowed the same sledge we had two years ago and I'm pumped to get him out on the ice... when our days are a little less booked. 

Surgery Recovery: He is doing great, now that his casts are off. His incisions have all healed ridiculously quickly and his legs are still good. I am super paranoid about them tightening up again though. Twice a day, I give him a leg massage and go through a bunch of deep stretches, then two more times a day I just do the stretches. It's time consuming and sometimes, the last thing I feel like doing. He also wears his leg splints to bed, which he's not complaining about. He's also had a bazillion appointments related to his legs. OK, maybe not that many, it just feels like it. He has new AFO's now, which required new boots and check ups. 

Other Stuff: Then there's all of the monsters lurking under the bed, the things I notice and wish I wasn't noticing. I feel like his back is wrong. I'm not sure how to explain it or what is going on exactly, but he's not straight. I don't know how to fix/prevent it. I'm not sure I want to think about it very much, but obviously I can't bury my head forever. He's also been coughing/choking a lot lately, which is where my brain goes crazy and tells me that he'll need a decompression RIGHT AWAY. That is the stuff of nightmares. Of course, it could be the dry air giving him a tickle or a cold or something simple like that. Oh, I just want it all to go away. 

And between all of this SB overload, we have Christmas. I adore Christmas and love extending the Holiday Joy as much as possible. I am trying very hard to not let SB trump that joy. 

Laura did our photos again ;) http://www.everylittlephoto.com/

Tuesday, October 15, 2013

Surgery Number Five

It happened. We survived.

As you can imagine, I hardly slept last night. Add to that the alarm clock set for 4:30am and you can imagine how much caffeine was required to get through the day. I was so consumed with all of the dreadful thoughts you just are not supposed to think about when facing a situation like today. 

The prep we had done with Kingsley this past week and the hospital tour made such a difference for him! He was calm, he understood what was happening, he completely let it all happen. 


When it was time to take him back, he was calm. He explored the OR a bit and then easily let the Dr put the mask on his face. I talked to him, held his hands and without the slightest quivering lip, he drifted off to sleep. So brave, so very brave. 

Surgery took only about 90 minutes. His surgeon was very pleased with how much she was able to stretch his hamstrings. She had ended up doing both ankles once she had a good look at them in the OR. This actually works out in his favour because with both feet evenly casted he can bear weight go in his stander! She also only saw the need to cast him from the knee down and then wrapped zimmer splints over his whole legs. 

He woke up in recovery like a true champ. Not a tear, barely a cry until he saw me and wanted hugs. 


He was a little groggy. We sat him up and showed him his legs. His response was that he would like us to take off those new shoes please, he didn't want them on. 


He then turned his head to me and in his raspy-newly-extubated voice said: "Mommy, I wuv you. You're my best fwend." Aw!! Who cares if he was a little stoned, it was the highlight of my day. ;) 

It took them nearly 3 hours to get us a bed on the kids floor, so we just hung out in recovery for a long, long time. He did great. He ate Popsicles, played on his iPod and snuggled. 

This afternoon, he acted as though nothing at all had happened. The personal TV in his room was a little bit of heaven for him, so the TV coma definitely helped to keep him happy. He also wooed his nurses into showering him with juice, cheese, and pizza. It's tough work being so darn cute. 


His legs are completely hidden from me. The incisions are small and better left alone to heal, so we are not to touch his splints at all. Next Monday his surgeon will take them off and recast him into lighter, straighter casts. For now, they weigh a ton and are about as wide around as my thigh. Craziness. 


Tomorrow, we should be seeing someone about a wheelchair and a means of driving him home. Then we will be discharged, so long as nothing happens tonight. For now, I'm just thankful that part is over. Time to recover. 

Friday, October 11, 2013

Counting Down

I love count downs. Count downs to holidays. Count downs to Christmas. Count downs on the radio. Turns out, though, I hate count downs to surgery.

Kingsley's surgeries so far have been like this:

#1, back repair
Doctor: Congratulations, it's a son. I'm going to prep him for surgery now.

#2, shunt
Doctor: Remember that shunt I said he'll likely need? He needs it. I'm going to prep him for surgery now.

#3, decompression
Nurse: the doctor just looked at the images. He needs surgery. You've got less than a week to get things organized.

#4, detethering
Nurse: the doctor just looked at the images. He  needs surgery. You've got less than a week to get things organized.

#5, tendon release
Doctor: when do you want it? Five months? OK, see you in October.

Five months is far too long to sit around thinking about the worst things that could happen and all the ways that this could go badly. The last month has been the worst. Between Kingsley's endless stream of doctors appointments regarding his bowel fun, there has been the consult for surgery, pre-admit appointments, a urodynamics (which he did like a boss), OT appointments, PT appointments, SLP consults, preschool discussions, and finally, a tour of the hospital to desensitize Kingsley to what was going to be happening. It's been a lot to take in and I'm just drained from it all. Spina bifida's impact on our lives ebbs and flows, and lately it's flowing over my head.


I think the hardest part of all of this has been not knowing what will happen after the surgery. Word on the street is that it could go one extreme way or the other: either he will carry on as normal, but with casts or our lives will go into a dead stop for 4-6 weeks while he has the casts on. His PT does not think we will be able to modify his wheelchair to accommodate casts and so will have to use a loaner from the centre which I haven't seen, but has been described as a beastly thing. If he can't get around in the wheelchair, can't crawl, can't sit unsupported, and can't go in his stander, the poor kid will be immobile. We have requested a scooter board be made for him, but it's not ready yet. Another huge issue is how he's going to fit in a carseat and where his legs will go while he's in one. It's another thing we won't be able to work out until he has the casts on him. And of course, how heavy are these casts going to be??  Even if I get him in a carseat, will this modified wheelchair fit in our van without breaking my back?

I am looking forward to this being over. Not only because I'm beginning to dread the casts, but because I'm excited for when the casts are off and he is able to do more. I can barely get his AFO on his one foot now and hate putting him in his stander because I can't get his legs straight enough and I'm constantly worrying if I'm doing more harm than good.

And so, we count down the last few free days before surgery. It's a nice long 4-day weekend that we have to visit with family and just hang out. Tomorrow, we are going to a wedding, Sunday is Thanksgiving, and Monday we will spend just enjoying our time together. Tuesday at 8am, his surgery begins. Counting down...

Friday, February 15, 2013

When it Rains...

Isn't it funny how you can have months and months of nothing go by and then all of a sudden you find yourself faced with multiple things all at once? No! It's not funny! It's horribly stressful and it's making me grouchy.

First, exciting stressor: we are moving. In two weeks. Or maybe three. Not entirely an exciting stressor since it's hard to move really quickly when you don't know when you're moving. We need to act fast because my knee surgery is coming closer and closer and we need to be settled before that happens. However, I like things like this and it could be just fine if that's all that was going on.

But. Of course it's not the only thing.

Kinglsey has mild scoliosis, which is kind of normal for people with SB. He was assessed last year and it was only about 13 degrees. I don't actually know what that means, but it was no big deal.

He's always leaned to the left, mostly just when he was tired. He has one side stronger than the other, but a slight curving of his wheelchair seat and giving him something to hold in his hands is usually enough to get him upright.

Nope, this isn't the case anymore. Lately, he's leaning a lot. His elbow is always on the wheel getting filthy, he slouches when he's eating, and the lopsidedness in his back ribs is obvious to me more than it's ever been.

This could be his scoliosis getting worse. This could be Cordelia's super late bedtime tantrums making him really tired. This could be his cord retethered, since it has come on pretty quickly. I don't know. But the calls are starting, the appointments will follow. It's starting to pour.

Monday, December 3, 2012

Not Just About Kingsley...

I'll say from the outset that I'm completely fine and nothing is wrong.

It's been a long two months though, where I wasn't sure that this was the case. Two big lessons I have learnt from raising Kingsley though is that you don't take anything for granted and that you don't sit around and wait for problems to go away, because they seldom will. The weekend that Kingsley was in the hospital, I had to admit to myself that something was going on and I couldn't pretend it wasn't. A doctor here, a few tests there, and I finally got the results that said, right now, I'm just fine. There is an explanation for what's going on and that explanation doesn't start with a big ugly C.

It was really scary. It's one thing to sit and think about what could happen to Kingsley, to run over all of the worst-case-scenarios and scare the bejeezus out of myself. It's another thing to think of all of those things happening to him and for me to not be here. Contemplating your own mortality in terms of the people left behind is probably the most disturbing thing to do as a parent of young kids. I don't recommend it.

Anyway, I can stop now. I will stop now.

I'm not sure that I needed another reminder to be thankful, as this would be the fourth autumn in a row where Kingsley has given us quite a bit of heartache and anxiety only to have things work themselves out, but tossing in my own health was a unique twist, I'll give Him that. ;) And I am thankful, still. Very, very, deeply and truly thankful for today and tomorrow and however many of those we can grab.


Friday, October 5, 2012

Define "Worse"...

That's it!

We're cursed. Unless there is some miracle and Kingsley's eyes are doing what they are supposed to do, I will be taking him to the ER in the morning. I've just had enough of the worrying and the wondering and the second-guessing. He has too many things going on and I need to be confident that they are not all related to some bigger thing. He's seen a handful of doctors, specialists, therapists, and I've been on the phone with nurses and pestering my SB peeps online and all anyone can say is: "If it gets any worse, take him in." I don't know what 'worse' means! I've started asking them to define 'worse', because every call I make seems to be to describe something worse than before.

At the start of September he had a virus of some kind.
Followed by constipation for weeks and he was the grouchiest kid in the entire planet.
At the same time, his eyes started doing funny things.
Then, he started getting urinary issues.
And he had a tooth break through.
The constipation ended and he returned to the cheerful, funny kid he usually is - absolutely no sign of discomfort or illness
... except for the urinary stuff and the eyes.
Then, his neck got stiff and I just threw my hands up and called/emailed nearly everyone on Kingsley's list. The answer was, "If it gets worse..."
Otherwise, neurosurgery has bumped up his regular check up to this coming Wednesday.

This evening, I noticed his left eye was getting 'stuck'. It won't move left of centre.

This is new. Does this count as 'worse'?

Then his urinary issues completely resolved themselves. That's better.

I can explain (or the doctors we've talked to could explain) the cause of each individual issue on their own. I can't shake the feeling that they might be related, though.

Through this whole thing he hasn't had a fever or any other indication that there's an infection anywhere in him. He hasn't shown any of the classic signs of shunt failure... except that constipation can cause one and sudden onset of eye issues could be a symptom of one... but I'm not sure which came first: the constipation or the eyes. They were literally the same day. His gross motor and fine motor functioning has not changed.

So, now I'm done torturing everyone around me with my constant whining about not knowing what's going on with Kingsley ;) Tomorrow, there will be one of three things happening:
1. we'll find out something bad is going on inside Kingsley and find out how to deal with it and I will feel crazy for not taking him in earlier;
2. we'll find out I'm completely paranoid and he's got a bad case of ToomuchiPaditis and I'll feel crazy for wasting Kingsley's good mood at the ER; or
3. there will be a story on the news about this wild mamabear who attacked an ER resident after being told 'wait and see' for the billionth time... in which case I'll feel a little crazy for being on the news. ;)

I'm ready. Wish us luck.

In the meantime, distract yourself by looking at this gorgeous shot of King. We had a photoshoot with the very talented Stacey Hanlon yesterday and the cuteness was overwhelming.




Monday, September 24, 2012

The Changeling

Someone has stolen my happy, sweet, charming little boy and replaced him with a grouchy, hollering child who is impossible to please. It's been three weeks and I'm exhausted. He's had days and moments where he returns, as delightful as ever, and then just like that, he's gone again.

It's come down to this. He got a cold at the start of September which lead to a change in eating habits for Kinger. This wouldn't be a big deal for most kids, but for a kid who needs certain things to remain a certain way, it was a big deal. I'll let you work that one out for yourself... which is exactly what King is not doing ;)

After a long week of trying to make things work again, we went back to the doc, who suggested all of the same things that the wonderfully helpful SB community had already told me. Unfortunately, Kingsley hasn't responded to any of that. That leaves us with one choice left: the dreaded hospital. That's where we're heading tomorrow. Ho hum.

In other news, we also got in to see the eye doctor last week for a whole bunch of tests and King is just fine. There was a very good explanation for his crossing eyes and it's not strabismus or farsightedness or shunt-related or anything that he was concerned about. He said it will go away on it's own and that we will just need to follow up every couple months to make sure he outgrows it. Phew! Although, not gonna lie, I was a teensie weensie bit disappointed that he wouldn't be getting glasses. You know where I'm going with this? How insanely cute would King be as Harry Potter flying on a broomstick for Halloween? *sigh* Maybe next year.

Saturday, September 15, 2012

.... And Breathe...

I feel like I've been hit by a bus and then had that bus park one of it's tires on each of my eyes. I can't keep them open. I feel like gravity is exceptionally strong today. I have never been so happy to feel so lousy, because I feel how Kingsley has looked for two days.

Rachel and Cordelia are sniffing, Jeff says he has a cold.

Kingsley is acting completely normal, alert, hungry, thirsty, happy.

I'm going to go to bed now.




.... also, today is three years since Kingsley was diagnosed in utero. I'm not upset about it. See? It really does get better. I had forgotten to even mention it.

Friday, September 14, 2012

September Limbo

Yep, it's September, the month of doom around here. The month where Kingsley freaks us out and we get bad news. It's kind of getting creepy, if I'm being honest. September 1st hit and I was reminded that my nieces birthday was the next day. It hit me like a ton of bricks. Pre-Diagnosis Day. The day we got the results of the blood test that said something was wrong. I stopped my brain from going down there. It's been three years.

September curse is in my head. So what if September 2009 was diagnosis month, September 2010 was syrinx-not-gonna-walk month, September 2011 was deja-vu-scare-month? Don't get upset about stuff that wasn't happening.

The days ticked by.  The curse loomed.

OK, I'll cut to the chase. Strange things are happening and I'm about 5 minutes from rushing him to the ER at any given point. I don't know if something is going on with his shunt or if I'm over-thinking. Either way, he's not himself and something really is going on.

Right now I'm in wait-and-see mode (which I now embrace, for those of you on the early end of this SB journey ;)). He's been grouchier and grouchier, eating less and less since the girls went to school. I have been excusing it as 'he's two' and 'he misses his sisters' and 'his entire world just flipped'.  We've also had people in our house doing renovations all week, so it's been chaos. Totally justifiable to be grouchy.

Then he threw up (because he was crying and upset).

Then he threw up, again (for no apparent reason).

So, what's a shunt-fearing mama to do? I called the paediatrician and the neuro nurse.

Kingsley has had two days of total lethargy. He eats very little and didn't drink for nearly 24 hours (he is ok with that now). He doesn't have a fever, isn't fussy like he's in pain, won't tell me something hurts, no sign of UTI, ear infection, his eyes track normally and open fully (when he can keep them open), and his nose is not running at all. Just wants to sleep or snuggle all day.

I'm giving him 18 more hours and then we're trucking it to the ER if he doesn't get worse or better.

Limbo is a blissful place to be, in a way. Shunt malfunction is not fun. That means surgery, a couple days in the hospital and my poor kids having even more trouble adjusting to September this year. There's always the chance that this is related to Chiari in some way I don't know about, which is far worse. Then there's a chance that he'll wake up ravenous and ready to play. Or with a cold. Either way, we'll get through it like we always do.

Tomorrow is the true Diagnosis Day anniversary, which is still far and away the worst day of my entire life. Whatever this September brings, we can handle it.

Tuesday, May 22, 2012

A Bump in the Night

I don't live in a state of constant worry. I thought I would, especially when handed the list titled: Signs of Shunt Malfunction. Fortunately, Kingsley doesn't give me a whole lot to worry about. There was his first autumn that caused me a huge amount of anxiety, obviously. Then there was this past autumn where I lost sleep a few nights. Then there have been a smattering of why is he crying?? moments where the the big bad shunt monster crossed my mind. But otherwise, no worry.

Last night, I didn't sleep. It was one of those nights where I did worry.
Kingsley wasn't sleeping. Again.
He's been off, not himself, grouchy, whiny, tired, miserable. My happy little boy is anything but happy.
Last night, as I rocked him in his room, the evil thoughts started creeping in...

Shunt. Cord. Chiari.

Surgery.

Oh, the dread that can creep into your mind at two in the morning.

Kingsley eventually went to sleep, after a dose of Advil and a long hour of rocking. In the morning, he was grouchy again, but I was able to run through all of the tests I could think of to make sure he still had all of the same movement and functioning in his legs that he had a month ago.
I mentally went through the Chiari warnings while we went about our morning and didn't find any that raised red flags.
I went through the all-too-familiar shunt watch list in my head and didn't check enough to warrant concern.

Then I stuck my finger in his mouth and rubbed his gums while he practically purred.

Teething.

Exhale.

OK.

It's so much easier to think clearly when the sun is out, isn't it?
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