Showing posts with label hospital. Show all posts
Showing posts with label hospital. 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.


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...

Tuesday, August 27, 2013

MRI Number...?

I think today was Kingsley's eighth MRI, but I could be wrong. I've honestly lost track. They're just checking things out, for once. We don't have any obvious concerns, but neuro wanted a follow-up after last years virus, and to check the syrinx, the possible retethered cord, space for the Chiari, etc.

This was the first time I've talked to him about it before hand. The Pre-Admit Clinic gave us a print out of pictures to talk to kids about and give them a visual description of what would be happening. Last night, we chatted about it and I showed him the pictures. He started crying. He said he didn't want the mask, didn't want to go to sleep, didn't want to go to the hospital. I was able to talk him down a bit and let him know that I'd be there and I'd be with him when he went to sleep.

This morning, I opened his door and his first words were: "Be-tuz I don't want to have a nap and I'm scared of the mask!!" Oh, buddy. :(

He did amazing though, truly. He was scared. He cried when the nurse put his bracelets on and kept asking for chocolate pudding. We spent most of the morning snuggling and reading books. When it was time to go in, I carried him and he told me how scared he was again. I laid him down on the gurney and the anesthesiologist was so wonderful, talking to him and trying to keep him calm. When they put the mask on, I reminded him that this was just sleeping medicine and it was going to be okay. He just nodded, held my hand, breathed slowly, and drifted off to sleep.

Crush my heart. Three year-olds should not have to be this brave.

He woke up in a great mood, making the nurses just fall in love with him. We watched Curious George and shared a popsicle until he was allowed to go. While we were there, one of the nurses showed me his hospital file. It was about three inches deep. This kid is going to need his own shelf by the time he turns ten.

We get the results in one week.

Thursday, August 22, 2013

Autumn is Coming...

Autumn sucks for Kingsley. 

We discovered the syrinxes in autumn 2010 (and had a bunch of surgeries).

This year, I figured I'd flash the bird at Autumn and beat it at it's own game: I planned a surgery for Kinger. So there! We already know that autumn is going to suck and we know why. I was all: IN YOUR FACE! right up until I hung up the phone on Tuesday with a surgery date and pre-op appointment scheduled. Then I felt like throwing up. 

His hamstring and heel-cord releases (are these even the real surgery names? I may be making them up) are scheduled for October 15. King and I will be meeting with the ortho surgeon two weeks before that to finalize the details. His PT wants her to consider doing some work on his ballerina foot as well to get it less ballerina-pointy and more flat footed. Either way, he'll be in double leg casts for four to six weeks afterward. 

I haven't really figured out how I'm going to tell Kingsley all of this. Right now, I discuss it in front of him, but not with him. He doesn't quite grasp the concept of time and thinks that anything I mention in the future is imminent - for example, thanks to Costco having Christmas wrap out already, Kingsley thinks Santa is coming any day. I don't want him to live in a state of constant panic at the thought that any car ride is going to end at the hospital with him having surgery. It's very different from the last four times when he was an infant. On the other hand, I do need to talk to him about it eventually. It would be rather cruel to take an unsuspecting child into the hospital and have him wake up in double leg casts. SURPRISE! 

One other itty-bitty thing causing me a bit of anxiety is that he has an MRI booked for next Tuesday. It's supposed to be just a routine see-how-things-are kind of MRI. Pleasepleaseplease pretty please with a cherry on top, can this just be a routine MRI and not some fake-out where we discover something we don't want to discover??  I did tell King about the MRI next week and the mask that is going to help him fall asleep. He was not pleased. Apparently, he remembers the Mask of Doom from last year and freaked out a bit when we were talking about it. Eek, poor guy. :/

we had the pre-admit appointment today. I think he handled it pretty well.

Saturday, October 27, 2012

M Argh I

Kingsley had his MRI last week and as usual, he did great. I don't know how we got so lucky, but he rocks the hospital stays. I suspect it has something to do with the fact that rules are constantly bent when he's around in the form of a lot of doting nurses, waterfalls of chocolate milk, unlimited chocolate Timbits, and an iPod that he doesn't have to share. 

Ever since his brief weekend in the hospital and his MRI, King has become obsessed with going back. The hospital is not far from our house, so when we're in the vicinity, he gets very excited. He hollers to go there, turn that way, go back, go see the doctor, go see the Cat in the Hat (there's a big stuffed one at the ER doors). I'm not sure that many kids beg and plead to go to the hospital, but that's my boy. 

We go back on Wednesday to get the results. I'm fairly confident that they won't show anything scary. Which, actually, just typing that made me really nervous about being blindsided... In any case, with his first two MRI's they called me within hours of us coming home to book surgery and that didn't happen this time. I'm taking that as a good sign. 

Wednesday, if you check your calendar, is Halloween, which is how I segue into the amount of pressure I am feeling about Kingsley's costume this year. This and this and this and this (and this and this and this) have caused me intense panic whenever anyone mentions Halloween. I stupidly decided that this was the year I would attempt a wheelchair costume for Kinger. I am not crafty, have I said that enough? My sister sucked all the crafty genes and left me with none, then she moved to the other side of the country so she can't help in these dire circumstances! Fortunately, I have a half-crafty friend and my sister's handy husband was in town. Between the three of us, we have created something that is pretty cool. Or, it will be once I finish it. :)


Sunday, October 7, 2012

Emergency Room

Yesterday, Kingsley and I spent a lovely day in emerge. All. Day. We went in about 10:30 after taking our time getting up and ready, spending a bit of time with the girls, then we were off.

It started as a pretty quiet day in the ER. He got a bed right away, the resident came right over. He appeared to be quite baffled by King and the story I told him, as if his instinct was to label me as crazy, but that I was so convinced of it and there was that wonky eye, he had to follow through. The next doctor knew about shunts and asked all the right questions before paging neuro.

Tricky thing here is that this is our Thanksgiving long weekend, so both of the neurosurgeons who have done Kinger's big surgeries are away until Tuesday. Bad timing, buddy!

Our first trip was X-ray to check the physical structure of the shunt. It's all there, in one piece looking like it should. Phew. Neuro sent down the message that it didn't sound like shunt, but go for a CT just in case.

Hours later, we attempted a CT scan. It was King's first and it did not go well. Lie perfectly still on a bed with your head restrained? No thanks! That was about 6 hours into our visit and the first point where I almost cracked. We were so close to answers!! Fortunately, the nurses decided to give him some meds to make him sleepy.

I may have mentioned before that Kingsley is a rockstar. At this point, we had spent the whole day in emerg, not eating as much, not drinking as much, not napping, and not really going anywhere. I had 4 books, 1 car, and the iPod to keep him entertained. Kingsley, however had his wheels and his smile, which kept the nurses entertained and flocking to help out, which meant he had popsicles, bubbles, stickers, movies, and a hallway to race up and down. It wasn't a bad day.

Then he was given this sleepy med, right around shift change and the kid turned into an angry, drunk toddler. It was a bit amusing, to be honest, though not that much. He slurred, swung his arms wildly, and kept yelling about getting on his wheels and finding his own stinkin chocolate pudding since we were holding out on him. A topped up dose finally knocked him out and off to CT he went.

By this time, the ER was a very busy place. You aren't given a lot if privacy, really, given that kids are often loud and dramatic and only a curtain separates you. I kept catching myself feeling badly for the other parents... Aw, that's rough, their kid is in so much pain, that's so hard, I'm lucky King's not in pain and we're just... WAITING TO FIND OUT IF HE NEEDS ANOTHER BRAIN SURGERY. Nevermind, I win. Oi.

Angry, drunk toddler returned as the meds wore off, just in time for me to meet the Sr NS resident and find out that King's ventricles were enlarged - an indication that his shunt wasn't doing its job and that part or all of it would need replacing. He wanted Kingsley admitted and to have more tests the next day to figure out exactly what wasn't working and where.

So, here we are.

He was finally settled in his room and went to sleep just before 2am. I've had a very short sleep on a very uncomfortable chair-bed, but he's still dozing. I think today will be a sedated MRI and a shunt tap/shuntogram which I'm too tired to explain right now. I'm glad we're here, thankful in a weird way that this is 'just' his shunt, and looking forward to getting it dealt with and behind us.

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.

Tuesday, September 25, 2012

The Post in Which I Vent

It may sound strange, but I like the hospital. We've spent a lot of time there and although the news isn't always good, it's also the place where things are made better. Things are fixed. Problems are solved. Answers are given. It's a huge place, but I usually know where I'm going, will see familiar faces, and feel comfortable being there. I've even worked there, way back in the day.

Today, I am not so pleased with the hospital. I had one of those experiences that I've heard people talking about where nothing happens and you have to fight hard to keep the stink eye from creeping up onto your own face.

Kingsley's blocked. Last week we saw his pediatrician and she said to try getting him cleared out at home. I talked to the smartest people in the world (aka my SB peeps) and they told me to give him mega doses of PEG and try a suppository, then stand back and wait for the magic. I gave him the mega doses, give him the suppositories. Four more days of nada. We went back to the pediatrician who told me to give him the mega dose of PEG and head to the ER for a clean out if it didn't work. We've done the PEG and now Kingsley is boycotting all fluids, so this afternoon I took him over to the ER.

After explaining everything that we've gone through in the last two weeks they suggested that I give him a mega dose of PEG. Really? Fabulous. Welcome to WE DID THAT LAST WEEK and he doesn't want to drink anything. He suggested juice. Brilliant. Apparently missing the part when I said he stopped drinking juice and eating fruit which caused the constipation in the first place. Then said to put it in chocolate milk, at which point I stopped talking and just nodded and asked if we could leave now, because really, if I hadn't already tried any and all fluids I'd consider myself a bit of a moron and I'm not a moron.

So, if this Brand New Idea to hide his PEG in something he really wants to drink doesn't work, then we have to take him back to the ER next Monday and he'll likely be admitted and fed the PEG through an ng tube until he clears out. Sounds like fun, eh?

One more bracelet for the pile.

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.

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.

Thursday, November 24, 2011

One Year

One year ago right now, I was in this room

 After putting my baby on a bed and watching him go rolling through these doors

I was holding my breath, heart in my throat, not thinking, not thinking, not thinking about what was happening.

Watching the clock tick on, minute by minute, hour by hour.

Waiting to run and see my baby.

It's strange how much this anniversary has  been on my mind. Although we obviously are not celebrating, it's so fitting that the one year anniversary of Kingsley's decompression surgery is on the American Thanksgiving, because I do not have words to say how thankful I am that one year ago his surgery went the way that it went; that I didn't think on that day about what could have happened, what almost happened, and what would have happened. Those are all the things that I'm able to start thinking about only now and it terrifies me.

It wasn't Kingsley's first surgery and it wasn't his last. There's no guarantee that he won't need another decompression at some point. He'll need to have surgery for his shunt again. Maybe many shunt surgeries. There's a good chance he'll need more detetherings. This is our reality.  Not having those surgeries would mean not having Kingsley, which is something I can barely wrap my head round. And so we go through it.

But right now, today, he doesn't have to. Today, we went swimming and he did amazing. He paddled with his arms, floated on his back by himself, and blew bubbles. Today, he asked for (and received) hug after hug after hug. Today, he had two candy cane cookies for lunch, because he wanted them.  Today, he smiled and played and pulled his sister's hair. Today is one more day that SB takes a backseat to life. We are so grateful for that.

Saturday, October 15, 2011


For a long time I didn't want to admit this because I thought it was kind of weird, but then one day chatting with other moms like me I realized I am not alone. I collect hospital bracelets. OK, maybe not collect, but I keep them. All of them. Not just the new baby ones with BABY GIRL BELL written on it, but also the big red ALLERGY ones that Kingsley gets and anything else they put his name on.

I have quite the collection. Cordelia has only 4 bracelets from when she was born (including mine and somehow the one that is supposed to set off the alarm that managed to come home with us). Rachel has her birth ones, plus one trip to the ER when her whole face swelled from a mosquito bite. Kingsley has his collection from his birth, his two MRI's, his two surgeries, one ER visit for a shunt scare and now a second ER visit from last night. Lucky boy.

No worries, everything is okay, but we had a big scare! Just as I was about to head up to bed last night, I heard the strangest strangled cries from upstairs. I had to stand in the hallway for a few minutes before I could figure out whose bedroom to go into, as it didn't sound like any of my children. It was Kingsley.

My first thought was that he was choking. He couldn't breathe and was making the most horrible noises as his whole ribcage struggled to get in air. I scoured his crib, looking for any signs of what he could've been choking on. Nothing. Raced him downstairs and out the door for cold air. No change. Panic.

He wasn't crying, seemed totally relaxed about the fact that he could hardly breathe. I think that was what scared me the most. He just wasn't sick. If this was croup, wouldn't he be sick? And if it wasn't choking and wasn't croup, what was it?

That's where the mind flies to 'complications'. Things related to SB. Stridor is a symptom of Chiari. You know, that big bad thing he had that big bad surgery for last November? My mind went there. Jeff's mind went there. When I woke up my poor mom in the middle of the night, her mind went there. I don't have a clue how or why he would suddenly have Chiari symptoms again, but in the middle of the night it doesn't really have to make sense - I raced him to the ER.

About halfway there, his breathing quieted. I could still hear it from the front seat, but I had to listen for it. Thankfully, the nurses and doctors we saw did a good job of not laughing at my panic as they diagnosed him with very mild croup, gave him a dose of steroids and sent us home. Turns out, you can have croup without being sick. Who knew? They did say that if the stridor continued longer than croup would to come back and we'd investigate other stuff. He's doing great today. Some normal coughing, but his breathing is fine.

One more bracelet for the pile.

Saturday, October 1, 2011

Awareness Month Deja Vu

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby:  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine!

The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life.

And then you live.

You have good days  and bad days and sometimes even worse days

You go on vacation (imagine that!) Yikes 

You live

Your other children continue to live

You have blips

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours

This is what it's really like to live with a child with SB

Tuesday, February 8, 2011

Home Sweet Home

I LOVE being at home with all of my kids!! Oh, bliss. Well, near bliss.

The last few days have been long. Kingsley has not slept well in the hospital. He fights sleeping and loathes the crib like you would not believe. He misses the girls and cries a lot. Yesterday, we got a new roommate. She was a four year old who had her appendix removed. She would sleep a lot, then randomly wake up screaming. Usually just after I had gotten Kingsley to sleep. It was frustrating. He would get so excited when he heard her talking, then realize it wasn't Rachel and get sad again.

To keep him occupied (and quiet), we uncovered a wagon and did laps. Lots and lots of laps. Everyone on that floor knew Kingsley by the end of two days in the wagon.

The girls did come to visit again.

And then we did more laps.

His bandage was removed and I got a look at his scar for the first time. It is scary looking. It's a couple centimetres longer than it was before and a lot of the red skin that he had has been... I don't know actually! Sewn in maybe? It's not there anymore. Not as much anyway. It'll be a lot more subtle when it heals.

Today, after doing a few laps in the stroller, he got his discharge papers. Alleluia.

(notice his sleeper? thanks Kathy!! perfect for my rockstar)

Since we've been home, things have been up and down. It is hard to keep him lying down. There's not a lot he can play with. He's sick of his phone games, sick of the usual books, not interested in cartoons even! He's crying a lot. I can't wait until he can talk and just tell me what is going on. He's sleeping now, but refuses to stay on his tummy. He's figured out rolling again and flips over the second I leave him alone. He's not settling well. We went through this last time, where there was a few days of adjustment to being home again. My poor boy. The girls are very happy to have us home. Rachel decided that she was going to throw a party for us and decorated the whole playroom and I've promised Cordelia a morning of snuggling tomorrow, just the two of us while Rachel is at school and Kingsley naps. This hospital thing is just no fun for anyone.

Saturday, February 5, 2011


I still think this surgery (detethering) is far easier than the last (decompression).  Kingsley is doing fabulous. He is far more alert and 'himself' than he was 3 days post-op last time. I can't even begin to explain what an amazing boy he has been. He takes these huge events so well, as if it were just another day. As if it were normal to wake up and find yourself face down on a hospital crib unable to go anywhere, with a big bandage on your spine. That is my baby. He puts the Star in Rockstar.

Twenty-two hours after his surgery, he was moved from the PCCU (paediatric critical care unit) to the regular children's ward. I had mentioned after his decompression what a challenging time we had on the floor last time - packed ward rooms, lots of noise, lights, people, action. Poor Kingsley had such a hard time. Since then, a brand new wing of the hospital has opened up and all of the children have been moved. It is a DREAM on this floor! It's HUGE, absolutely monstrously huge. I love it. There's no more 'nursery' wing, it's all kids on one big floor. Because it is still cold/flu season, there are a lot of contagious kids and kids with more critical things than Kingsley right now, so he is in a semi-private room. His roommate is a 13 year old girl recovering from surgery for scoliosis. They are a strange pairing, but she's quiet and her family is lovely. It's been great.

We haven't seen a lot of movement in Kingsley's legs since the first day, but we are not discouraged. His spine has gone through a big ordeal and spinal shock is normal after this sort of surgery. I am very hopeful for what will happen once the swelling goes down and healing is complete. Anxious and impatient, of course. ;)

Thursday, Kingsley slept a lot. He was dopey and disoriented. He kept pushing up on his hands to look around and see what was going on. It freaked me out and I spent a lot of time trying to coax him into lying back down.

Friday, we started to get small smiles from him. Just little ones. He was still pretty quiet and sleepy.

He refuses to look to the right for the most part. He's always had this preference for looking to the left, since he was born really.  We had to work on it when he was a newborn, again after the decompression and it seems once again we will have to work on it when he gets home. For now, he looks to the left and as a result has a very puffy right eye. 

He misses his sisters. The first smile I got out of him was when I showed him a picture of Rachel. He just pats the pictures all day and then will hand them to me as if he's saying, "Hey Mom, bring me her, okay?"

Then his wish came true and the girls came for a visit! The GRIN on his face was unreal - ear to ear, he pushed right up and just kept reaching out to touch them with the most happy face you could imagine. It was priceless. The girls were equally pleased to see him and give him kisses and comfort him.  Lovefest all around.

Unfortunately, it is a bit hard to occupy a 12 month old who has to stay on his belly all day. My iPhone is the best thing ever. I can let him scroll through the pictures of the kids, watch videos of them, and play his favourite games. His top two, in case you were interested ;) are Peek a Boo Barn and Duck Duck Moose's Wheels on the Bus (we have it voiced over with Rachel singing and he recognizes her voice).

This morning, I was greeted with this:

All smiles and all for me! There's my little man. :) Today was fairly uneventful. His incision is clean, dry and healing well.  No leaking or problems at all. He is allowed to roll onto his side or back while awake, but still has to sleep and spend most of his time on his tummy. There's no word on when he'll be released.

One other fun thing about this hospital stay is that Kingsley keeps getting brought meals. I know this is going to sound odd, but I love hospital food, so I was pretty excited when the trays began arriving. It's nothing elaborate - mostly soup and jello and stuff, but since Kingsley doesn't actually eat any of that or drink ginger ale (really, who makes these menu's??), I've been getting a lot of regular snacks. Today, he was brought ice cream twice! Score! The second time, I thought I'd at least offer him some, expecting a refusal when low and behold - he loved it!

You're probably thinking 'love' is a bit of an overstatement based on those faces, but for Kinger voluntarily opening his mouth for anything is a big deal and he was all over this stuff. Maybe he is my kid after all ;)

Wednesday, February 2, 2011

Out of Surgery

Well, now that we've gone through it, I can say that so far the detethering is MILES easier than the decompression! Not only was it surprisingly shorter than planned, but Kingsley looks great. After the last surgery, he was so sad looking, so pale and puffy. Tonight, he just looks tired and groggy. I can handle tired and groggy. 

 (it's iodine on his diaper, not poop!)

He's a bit puffy in the face, but not too bad yet. I am sure the fluids and being on his tummy will make it worse  eventually. He was extubated right away, but like last time has developed some stridor (difficulty breathing).  His throat is all dry and raw and he's not completely out of it, so he kept swatting away the tube with humid air. As a plan B, they put this cute little box over his head that has humid air pumped into it. It didn't seem to bother him. My baby is in a bubble.

I haven't seen the incision yet as it's bandaged, but it isn't bad looking from what I can tell. His doctor said it's a little bit longer than his original scar. It comes up to about his pant line now, so not nearly as bad as I had envisioned. One loooong bum crack. ;)

Alright, so there are also a few things that are happening that are unexpected and I'm not really sure what to think yet. For one, his toes are wiggling, which isn't new, but they're just wiggling away none stop it seems. Just little wiggles. I'm not sure where I got the impression that he'd be nearly still from the waist down post-op, but I was surprised to hear them say how much his toes were moving and then to see that.

The other thing was sort of big. Oh, Kinger, Mommy's heart cannot take all this back and forth!! We rolled him up on his right side to cath him and while the nurse and Jeff held him up there and I got down to business, Kingsley sort of woke up and got mad. He cried a bit and when he did, his leg moved from the knee, like he was kicking backwards. His thighs were parallel, but his lower leg went back at a 90 degree angle. Jeff and I both froze and I asked if he did it. He said no! Jeff sort of put King's legs straight and a couple seconds later, there it went again. After he was done and back on his tummy, we kept holding his thigh and waiting. He was doing it. He's kicking from the knee. No hip involved, you can feel the hamstring fighting against you. No push back though (quads), but I haven't felt this strong of a movement before from him.

See how his right foot (he's on his tummy) is bent in? He was bringing his foot right up/over to the other leg.

I am very anxious to see what tomorrow brings and after 14 hours at the hospital, I'm looking forward to sleeping through the night for the first time since... well, the last time he was in the hospital. Thank you all SO MUCH for your kind words, your support, you prayers and positive thoughts. I have no doubt that you helped Kingsley sail through the day and I am eternally grateful.

In Surgery

Things were a little tense around our house yesterday. There was a huge storm predicted to roll through. Snowmageddon part two and all of that. 30cm were predicted for last night, blizzard conditions, total white-outs, oh the drama over snow is never ending! Kingsley and I went for his pre-admit appointment and the PCCU doctor casually mentioned that the unit was closed - as in there were no beds, so unless someone left, there would be no place for Kingsley to go post-op... or in other words, there would be no operation at all. One child was due to leave, but if there was an emergency or that move didn't take place, we'd be dropped. Then, if those two things weren't making us nervous enough, Kingsley's cold moved into his chest last night and he got raspy sounding.  Three barriers stacked against us.

No call came through the night to cancel surgery because of a lack of room - one hurdle down. The snow came, but not as dramatically as they predicted. It was a bit rough getting out to the main roads, and things were slow going, but we got to the hospital and were checked in bright and early at 8am. Two hurdles down. The nurse checked him over and declared him still fit for surgery. Three down, let's get it on.

Unfortunately, there was some trouble with the surgery ahead of Kingsley. Not sure what it was, obviously due to patient confidentiality and all that fun stuff, but it went on and on and on and on. And we waited and waited and waited and waited. For six hours.

No worries though, you know what I'm going to say right? Yeah, he was a rockstar. ;)  I had breakfast this morning and I don't generally nap in the morning, but even so I think I was the grouchier of the two of us.

He posed for me....

And paced the halls with Daddy...

Sang to all the nurses... ("Hey kid! Nice wheels!")

He eventually cried himself to sleep around noon (3 hours later than he would've usually napped) and had a quick power nap...

And for the rest of the wait, he just gazed around gloomily, not really interested in doing anything but snuggling and probably wondering what in the world we were doing there for so long...

They took him into surgery at 2pm. It was rough saying good bye. I have realized at this point that it's just not something that is ever going to get easier. The entire 6 hours of our wait I was torn between wanting to hug and squeeze him and never leave the waiting room, and wanting to pass him over as quickly as possible so that I can get him back sooner and know that he's okay.

As I was writing that ^ his neuro nurse came to find us to let us know that they're closing him up already. They're done. Nothing concerning to report and we will see his surgeon in the next half hour to hear how it went. Then we'll see our baby boy again. This is about 2-3 hours faster than we had been told! I'm so anxious to see him.

Friday, January 14, 2011

Angels Among Us

If this journey we've been on for the last 16 month has taught me anything, it is that there are people placed in your life at times that are so perfect, it can only be because they are part angel.

It started with my OB. I had no idea how to choose an OB when I got pregnant with Rachel. My friend Lindsay told me to go with this one that she knew through school/work (Lindsay also told me once up on a time to keep my eyes out for this cute guy named Jeff that I would be working with, so she has golden angel wings for sure ;)). Not knowing any different, I requested her. She was a high risk OB, just starting out at the hospital I wanted and she needed to build up her practice by taking on 'regular' pregnant women. Rachel was the first baby born under her care here.

I went back to her for Cordelia because she said I could. When I got pregnant with Kingsley, I had decided to try out a midwife.  When Jeff and I were going down for the level 2 ultrasound that would end up diagnosing Kingsley's SB, I bumped into my OB in the hallway. She shared an office with the doctor we had been referred to for the u/s and saw my file and she was also friends with my MW. She said to me: "If you get some news today, I would be happy to take you in my care again."  Later on, the OB we who consulted with us told me: "If you want to continue with the pregnancy, you can come under my care."  The difference is small, but spoke volumes to me. I went with my original OB and I could not have survived my pregnancy without her support and care. She was everything we needed and then some.

One year ago today, I met another angel. She is the mother of a little girl with SB and we had been emailing back and forth for weeks. I finally got up the nerve to meet with her. We spent hours pouring over her pictures of her baby girl, talking about our fears and her celebrations with her sweet girl. She told me every detail of her hospital stay and told me exactly what to expect. Our baby's would have the same surgeons, in the same hospital. She told me about how she had had her c/s booked, but had gone into labour a couple days early. The next day, I went into labour 3 days before my planned c/s date, but I was prepared.

This past autumn, I met my second SB mom.  She introduced me to her son and told me about how he had a posterior fossa decompression when he was 4 months old. A few short weeks later, I was sending her a frantic message after receiving the news that Kingsley would be having the same surgery with the same surgeon.  She was able to prepare us in ways that no doctor could and was an amazing source of support through the whole thing. (thank you thank you thank you!!!)

And then, as if I needed more evidence of angels around us, on Kingsley's first night in the PCCU after having his surgery, his nurse told me that we should go home and sleep. I was so torn. I had no idea how I was going to leave my baby boy after he had just gone through such an ordeal. The nurse then causally mentioned that he knew a boy with SB and had known his mother since they were kids - it was the same family we had just met. It was as if someone had just whispered in my ear: See? I got this one. It's going to be alright.

There have been so many other people this year that have done things I can't even being to thank them for. When we get bad news and more bad news,  when we get good news, and more good news, we have an army of people standing ready to send out love and support to us.  How could we have possibly made it through this year without all of you?

As a mom of a child with SB, I am often told that I am strong. I don't know whether or not it's true. Most days it just feels like I'm lucky to have so many angels around me, holding me up.

 This angel most of all.

Friday, December 3, 2010


We're HOME!!!

So so so so happy to be home again! I was so excited to run out of there, I didn't even get a picture of Kingsley until we were in the van. So unlike me ;)

We surprised the girls and the three of them were giggling and smiling and cuddling for ages after we were all home together. Now the two little ones are napping and I'm so happy.  It feels so good to have all my angels home with me.


Kingsley is doing fabulous. And horrible. It has been the longest three days ever! Ughhhhh...

Kingsley himself is amazing. His head/neck is healing really well. No leaking at all, the bandages are off completely. He is also off morphine and just getting by on Tylenol and Advil. He amazes me with his resiliance. Not only is he working hard at recovering, but he is also busy woo-ing the nurses with his adorable smiles and his new tricks - waving and blowing kisses. Could he be any cuter?

The down side of all of this is that when Kingsley is not on medication, he's pretty much himself. Himself being a 10.5 month old baby who is stuck in a room with 3 other babies adjoining a room with 4 babies. With all those babies comes nurses, lights, crying, beeping monitors, parents, doctors, and a million other random things that are preventing him from sleeping. The last two days he cried for 7 or more hours. It has been horrible. HORRIBLE. I was almost very impolite to a nurse at about midnight last night. Instead, I had to walk out and leave my crying baby and then have nightmares about him ripping out the IV in his neck. Which, it turns out, he almost did. They had to remove it this morning because it was all bloody. My poor boy.

So, tonight when we were cruising into nightmare number three, Jeff and I kicked up a fuss. By some amazing coincidence one of the babies occupying one of the private room (we were told they were all there because they all were contagious) was suddenly deemed not contagious and moved into a ward room so King could have that one. He was sound asleep in less than 10 minutes.

I hate being That Mother. It was terrible and so frustrating, but I was ready to walk out with Kingsley if they didn't do SOMETHING that would allow him to rest.  We actually did ask if we could discharge him, but neuro said no. I suppose we could've taken him against their approval, but I'm really glad it didn't come to that. I just couldn't see how you could heal from neurosurgery when you are crying for hours and hours and hours and getting no sleep. Fortunately, the ward moves to a new part of the hospital with all private rooms in two weeks and the next time he's in the hospital we won't have to go through this.

The nurses have been horrified that the only pj's that fit him are pink stripes.  They discourage you from bringing your own clothes or blankets because they'll get tossed into the hospital laundry and they just don't have a lot of larger 'boy' sleepers, so he's been wearing the standard hospital stripes, which in his size are pink (they keep bringing him the yellow ones like above, but they're HUGE on him). I don't think he cares. He has been called 'she' a lot.  Tomorrow, I'm bringing clothes to him. I am praying that he will get to wear them home. I'm ready to bring him home and he's ready to come home. Cross those fingers.
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