Showing posts with label GI. Show all posts
Showing posts with label GI. 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....

Monday, January 13, 2014

It's A Big Deal

A couple of months ago I was out at Target with Kingsley and being unfamiliar with the store, we wound up in the underwear aisle. Kingsley, naturally, started screaming and cheering the fact that there was Thomas the Train... underwear. My heart squeezed. I turned him quickly and got out of that aisle. Fast.

Underwear is like the Holy Grail in our world. Social continence - the ability to stay clean all day long, though with non-traditional methods - is a huge quest. The very very bottom of the spinal cord is the part that controls continence, so nearly everyone living with SB has to work to achieve social continence in some form or another.

I have probably said far too much about our quest for social continence ;) It has been a battle for about a year and a half now.  I have been googling and googling and emailing and messaging and reading and consulting and trying and trying and trying again.

And then this weekend, Kingsley wore underwear all day. And all day today.

Underwear. 

All. Day. 

Kingsley. 

Do you know how long I've waited for this day? It was pretty darn exciting. 

I kind of feel a teenie bit like we are cheating on the underwear thing. While our #2 issues have been completely, totally resolved (ALLELUIA!!!), the brand new #1 issue is still there. I can't figure it out, but as the timing was exactly when we figured out #2, it must be related. So, anyway, to address that business, I got Kinger what I call men's maxi pads. They're Gentlemen's Incontinence Pads, but let's be real - they're blue and shaped like a pear instead of an infinity loop. Whatever you want to call them, they are significantly cheaper than diapers. Although, it was more awkward buying them than when I stock up on KY (which is not a wink wink thing, it's for Kingsley and I do buy about 10 tubes at a time and get a lot of averted eyes by cashiers). 

So, with one of those guys hidden in Kinger's Toy Story unders justincase, he is good to go! 

He is still going to have to wear a diaper at night for the foreseeable future until we get that stuff worked out.  He doesn't actually care what he's wearing or even notice. I mean, other than the big underpants parties we had all weekend. ;) 


However.

As thrilling as this is, it is not a permanent fix. The things we are doing now, the way we do them, Kingsley cannot be independent. It is different for every person, there are so many relevant factors - gender, leg/body functioning, age, continence issues... but we have come to the conclusion that for Kingsley to be both continent and independent, surgery is his best (and likely only) option. This has not been an easy decision, despite my previous thoughts on it. The procedure(s) we are investigating are far more invasive and scary than we first thought. The recovery will be long and unpleasant. The risk of complications are real. But, we have yet to find someone who regrets having the procedure done. The only regret we have heard is the regret that it wasn't done sooner, when they were younger. I don't know when we will be having it done, but the decision has been made. The next chapter will begin. 

Saturday, December 21, 2013

One Giant Leap Forward

I remember the glory of my children sleeping through the night, like, really sleeping straight through the night. That heavenly feeling of going to bed at night and knowing that I was not going to be woken up at all, just left to sleep... Bliss. All three of them sleep 11-12 hours a night still and it's delicious. They didn't always though, before they realized sleeping was where it's at, they woke up. A lot. So, when the change happened, I celebrated. 

That amazing experience is happening again in the form of diapers. As in, I don't have to change them. As in, they're not dirty. As in, hallelujah, the clouds are parting, we have SUCCESS!!!! 

It's amazing. I cannot state enough how much of a game changer this is for us. Nearly four years of all. the. time. ALL THE TIME. And now I've got it all figured out. BOOM. Merry Christmas to ME! 

To celebrate, Kingsley takes a lot of baths. Don't make me elaborate on why he didn't have a lot of baths before. Now, he bathes all the time. Anytime. He can take a one hour bath if he wants, I just let him play. 

And just when I was having visions of underpants, something else changed. He's wetting his diapers. Soaking them. I don't know why, it's so strange. He literally has never in four years soaked a diaper during the day or even really wet it. I am completely stumped. There's nothing obvious going on here, just that. Much better than the previous situation, but a bit confusing. Another riddle for us to solve.  

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/

Thursday, October 10, 2013

... And Then My Head Exploded

I wasn't exaggerating when I said our lives revolve around poop these days. It still does. Since meeting with the general surgeon a couple of weeks ago, I have also met with the GI again, Kingsley's paediatrician, and today King's urologist. It's been great, and by 'great' I really mean mind-bogglingly ridiculous. 

Here is a breakdown of what we are discussing:

GI: do a cecostomy and do it now. Stop messing around and cut to the end where this happens either way. No MACE, MACE is bad. Maybe a mitrofanoff. 

Surgeon: no cecostomy, there are too many risks. MACE would be better, but try enemas for now. 

GI: what?? The risks are minor. Don't do enemas, that's a waste. Try senna for now [sidebar: worst advice ever. That was an ugly, ugly week]. 

Paediatrician: Cripes. I can send you for a third opinion, where would you like to go, who do you want to see? Are things better in Toronto? [another sidebar: is there anything better than a dr that admits this isn't their specialty and refers to experts whenever you ask? No. There isn't <3]

Urologist: cecostomy? Never. He needs a MACE and I will do it. And maybe the mitrofanoff, we will see, but likely [insert awkward moment of him trying to explain why, LOL!!] And yes, do the enemas now. But get a MACE soon. 

Which is about the time my head exploded. What do we do? Whose opinion do we trust? I have no idea. At this point, we are going to hang out with PEG until after the casts (that he gets Tuesday) come off. Then we will try enemas. Then we will start talking about a timeline for the MACE and investigate the mitro further. There is some security in knowing that this is somewhat status quo in the SB world. 

Good grief. Kind of makes me want to punch myself for ever whining about potty training Rach and Cor. If only a sticker chart and Strawberry Shortcake underpants could solve these problems! 


(not that you shouldn't whine about how awful potty training typical kids is. It really is horrid. Worst 2 months ever. Kind of. Well, whatever, it sucks, I remember.) 

Wednesday, September 25, 2013

I Changed My Mind

This is another one of those posts where I use big words and talk about that stuff no one likes to talk (or read) about. So... Last warning here...

3...

2...

1...

Alright, well after complaining to an innocent neuro resident who asked the wrong question when I was a bit grouchy, I ended up getting a referral and appointment with the surgeon who would do Kingsley's cecostomy. I met with the surgeon yesterday. She examined Kingsley. She answered all my question. She asked the right history questions. These finer details really seem like obvious things, don't they? *sigh* 

It was a great consultation and in the end, I decided Kingsley is not going to be getting a cecostomy, at least not now. Some of the things that changed my mind are:

1. Proximity to the shunt line. King's shunt tubing ends very close to where the cecostomy would be. This could potentially cause contamination issues, at least while healing. An option would be to move the shunt line, but I absolutely hate the thought of touching the shunt and jinxing the perfect 3 years, 8 months and 1 week we've had with it so far. Don't mess with magic. 

2. You 'can't' have a cecostomy and a mitrofanoff. Whether it's truly anatomically impossible or just flat out difficult, I wasn't clear. She drew pictures. Anatomy is not my forte. Regardless, this seems to explain why people pair the mitro and MACE. At this point, we don't imagine Kinger will have a mitro, but I'm not ready to rule it out as an option before he's managing his needs on his own and we get a better idea of what is/not possible. 

3. Enema's. Finally. Finally, I had someone equally mistified by everyone's avoidance of the topic. She saw no reason why they wouldn't work for King and said that the very reason he couldn't be treated as a typical GI kid was the same reason these could be good for him... Something everywhere else in the world has figured out except our area, apparently. I wanted to give these a try before surgical options, but was given blank stares and brush-offs at every turn. Now, I'm going to do it! YouTube, here I come! (That sounds terrifying, doesn't it? LOL!) 

 She also wants to rule out one thing (with a long name I've forgotten) before persuing surgical options, so she's going to do a wee biopsy while he's under for his ortho surgery next month. We will have that knowledge in case we change our minds back. 

That's it. We have a follow up with the GI on Monday and then the new adventure will begin. Wish me luck! 

Saturday, July 27, 2013

Going Nowhere Fast

*** This is a poop post. The vast majority of you will want to just skip on over it. It's okay. Come back soon, I'll have something less gross to talk about, like swimming or my nieces visiting or anything that isn't brown. For those of you walking this walk, carry on. ;)

seriously, mom, this is so gross

So, the ongoing frustration continues. After being referred to the new GI doctor, I had high hopes about finally coming up with some great plan to deal with bowel business. I spoke with his nurse practitioner who said she wanted us to do a full clean out before the next step. 

Let me tell you, we've done clean outs before, but never to this degree. I wanted to vom on an hourly basis. Once again, both King and I were traumatized by poop. I will spare you the gory details, but Rachel and Cordelia are more than willing to describe the puddles. 

Puddles, people. 

I now have a toothbrush reserved specifically for the task of scrubbing itty bitty crevices in King's wheelchair. 

Anyway, once that was done, we found out the answers we wanted (there are no little caves or cavities made in his colon anywhere created from constipation and holding stale poop for endless amounts of time. yay.) and Kinger was all cleaned out. And then some. I called up the nurse, eager to hear what the next steps would be. 

Give him fibre so he's not constipated. (he's not constipated)
Give him other fibre so his poop is solid (his poop is solid)
[insert review of King's diagnosis and what neurogenic bowel means for him. for the second time since apparently it wasn't written down the first time. reminder that we want surgery. in the meantime, we want something else to do so he's not going all day, every day]
Try to train his bowel to go at the same time every day (November. Every night since November)
Have him sit on the potty multiple times a day (haaaahahahahahahaha!!! 30 min/day, multiple times a day?? good one)
OK, have him sit on the potty in the morning before breakfast, instead of at night (sigh. really? ok, we'll try)
Ummm.... (ummm??)
Maybe when his lower ab muscles are stronger he'll learn to push. (*crickets* uh... yeah and when his leg muscles are stronger he'll learn to walk, right? kthxbai)

And that's where I hung up and put my head down on my kitchen counter and King rolled up and asked me if I was sad. Oh, buddy. 

I don't know where we go with this. No one wants to talk about enema's, no one has any other suggestions. No one other than his urologist and I seem at all concerned that the train doesn't stop. I'm frustrated. 

A couple of interesting things DID come out of this experience though. The first was that just before we did the clean out, King did get constipated. Nothing changed - his diet, his liquid intake, his liquid output, his health, his activity level, his medicine - other than this. It's just one of those odd things that happened, but it's never happened before without some ominous reason.

The other was that Kingsley is acutely aware of every time he poops, toots or has a stomach gurgle. This is also new. He gets a look of absolute panic whenever it happens also, which makes me sad. I'm glad that he's aware of it, so that he can be changed quickly. I am not glad that he is so bothered by it. 

 are you STILL talking about this??

That's it, I'm all done. We have been having a great summer other than this nasty bit. Hopefully, it'll be our only blip! 



Monday, June 3, 2013

Surgery #6 ...and Maybe #7

Holy crap, right? He hasn't even had his 5th surgery (the hamstring/Achilles/foot release in the fall) and already we are planning more. It's like booking a years worth of vacations, only a lot less fun. But it's free, LOL! 

We have a whole lot to think about, but the ball is starting to roll on a surgery called a cecostomy. This is where you might have to Google while I convince myself that by not explaining it, I'm respecting his privacy. ;) It's going to resolve all of the poop woes. We hope. 

This is where my head feels like it might explode. I feel like for the last few months I've been throwing my hands up saying that if a c-tube is inevitable, then let's cut to the chase and just do it. Now, his specialist was like, 'it's inevitable, let's do this!' And I'm balking. 

Here is where my head is at:
Is it really inevitable? Really really? How really really? Is the alternative constantly monitoring and ruminating about nothing else? Because I'm not down with that. 

I can't find a downside, risk-wise. I think things will need to be changed out, it's a surgery, so the usual complications would be at play. But he's young, he heals well, and at this age, he will barely remember. 

It feels like a big decision to be making FOR him, but his GI described it like getting his ears pierced - you can always take out the earring and let the hole grow back in. 

Doing it this young (I think I'd aim for next winter after he's done with the ortho fun) was unexpected, but I'm all for skipping more med experiments, enemas and anything else that may cause damage and frustration, only to end up here in a few years, exhausted. 

While we were there, he also tossed out the idea of doing a mitrofanoff (Google) at the same time. THAT was not even on my radar. Jeff is all for it and I am not so sure. At first, I was an immediate NO! Because we don't have uro issues, he's all good and managed, so let's not fix what's not broken. I may come around though. There are some pro's to that as well. 


He will have just turned 4 when/if we do this. He will have 8 months to adjust to this before he starts school. Doing it then will also mean I will still be at home with him, since I'm going to have to find myself a job or something when all three kids are in school ;) 

I'm a little bit freaked out right now. I'm trying to remind myself that this isn't really making him more atypical since the way we deal with these things now is not at all typical, it's just different. Different is scary. Scars were once scary. Shunts were scary. AFO's, wheelchairs, catheters, drugs with long names- all scary once upon a time. This will be a piece of cake. One day. 

If anyone has any experience with these, any good stories or glaring reasons why we should stop all contemplation, then please, let me know. 

Sunday, June 2, 2013

Wassup

I've noticed a lot of other mom bloggers who have kids with SB sort of trail off posting after their kids turn three, which I am totally guilty of. I have one explanation: the unmentionables. 

King is almost 3.5 (holy crap!!!!) which means he's at the age where a lot of his peers are doing or done the potty thing. By 4, most kids are there. I have lofty dreams of winning this battle by about that time, but for now, it's a daily angst. 

Imagine your worst potty training experience. Multiply that by one neurogenic (aka totally ignores your pleading and plans) bowel and add in the fact that this is 100% out of Kingsley's control and you have my frustration. 

I can't talk about it much because 1. It's poop and poop is gross, 2. No one wants to read that, 3. King will one day keel over from embarrassment that I've said this much. 

So, this is our life. 

There have also been a few other minor ortho-type stressors, but by some miracle everything has started to work itself out as of a week or so ago and we have a bunch of appointments lined up that should start to ease my stress and hopefully give us a plan. 

When I'm not dealing with that unpleasantness, we are living smack in the fishbowl that is our house. The yard has been in progress for weeks, but pretty soon it will be done and I won't be literally surrounded by work crews and various tradespeople stopping in to do this or that. It's all worth it, but it's a bit strange. 

We are hiding in the basement so we aren't on display. 

Thursday, January 17, 2013

With No Segue

Our new house is awesome. No, we do not yet live in it. Long, boring story, but hopefully very soon we will be moving. In the meantime, I torture myself by daydreaming about how amazing it will be to actually live there. It is a Dream Home in every sense of the word. ;)


The potty action started great, then as I should've anticipated, everything went out the door when the holidays hit. Bedtimes were all over the place, we were all sick, lots of grandparents needing to babysit... Anyway, as soon as our routine started up again, I dusted off the potty and we got back to it. It's so very strange to potty train when nearly every factor is in my control and he has none.

All in all, things are going well. Lots of clean times during the day, lots of potty action, but it's still a learning curve I'm trying to master. All in time.


Remember the pregnant Mom I met at the library? In this city, six degrees of separation is really only about two degrees, so I was able to find her! And of course, she blogs ;) Her beautiful daughter, Ava, was born on December 4th and she's doing very well. This little fighter and her family are amazing. You can follow her story here.


Kingsley turned three this week. It feels like his first year was really heavy and consuming and action packed, and the next two have been kind of chill and just a chance to settle in and be comfortable. He really does feel like a three year old though. He didn't feel much like a one year-old when he was one because of the absence of walking and talking or all of that physical growth stuff. He didn't feel much like a two year-old because of the lack of language and tantrums (aw, shucks!) and toilet training trials that happen then. But three feels like three. I think three is going to be a good year for him.

For those of you who keep track of these things, tomorrow will also be his three year shuntiversary! He's still rocking Billy the First, which is awesome.


We are officially  members of the YMCA. Kinger and I went in there last week and had our tour, signed the papers and got our cards. We went for a workout Monday and had a wee snag though. When I dropped him off, I was one of the first there and they asked if he could stand. No. Could he crawl? No. No biggie, just have him sit there on the play mats. When I picked him up, I realized I had put him in the baby room and he was surrounded by infants. Today, he hung out with the kids his age and I had to drag him out of there (not) kicking and screaming.


And whatever is a mama to do when her camera stinks and her photorific sister refuses to cross the country to update her ancient blog header? Well, obviously, I went back to Laura! So. Ridiculously. Cute. The restructuring is a work in progress. I still need to play around a bit. :)

Monday, December 3, 2012

Big, Stinky News

Alright, so Kingsley is almost three years old (*sob*) and as he is nearing the end of what I would consider his babyhood, I suppose the time has come for me to stop discussing things that would make him cringe to read as a teenager. However, this is a big deal and he's not yet three and people talk about potty training all the time, so I'm going to also.

We started potty training Kingsley.

Okay, so yes, I realize 1/3 of you are thinking: "Sure, that's cool. Have fun." and that's just because you don't understand the ramifications of an announcement of something like this for someone like Kingsley. IT'S HUGE!!!
1/3 of you are scratching your head wondering vaguely what in the world this would entail, how..???
And the other 1/3 of you have kids with SB and have either already heard the gross details or are wondering what the gross details are.

I'm not sharing gross details here! But if you really want to know, you can ask me on Facebook or somewhere else that I can discuss it where Kingsley won't ever read it. ;) I will share some G-rated details though.

In the long laundry list of diagnoses that Kingsley has on paper, neurogenic bowel and bladder have been on there since just after he was born. Basically, he doesn't have control over that part of his body. Everything functions, just not within his control.  He will never be 'toilet trained' the way other boys will be. We use a combination of medication and catheters to control the bladder business and when that is working, he is dry during the day. Yay!

The other stuff is a bit more complicated. He's been on various medicinal interventions since he was six months old to make sure that he doesn't get constipated (like September!), but that just means he goes. All. The. Time. No control means that if he laughs, cries, yells, sneezes, coughs, bends, turns... yeah, you get the picture. I've had about enough of this, so decided it was time to do something about it.

My first change was adding probiotics to his diet. THIS IS A MIRACLE WORKER!! I can't express how amazed I have been by this one change. I put Kefir in his milk in the morning and voila! There was a change. There's no way change two would've happened without this change first. I wish we had done this ages ago. The 'change' is graphic though, so I will spare you those details. You're welcome.

The second change was the actual bowel training, as it's called. We are now training his bowels to empty when we want it to and not empty when we don't want it to. Isn't this just lovely talk? Bowel bowel bowel. It's such a gross word, but why would it be anything else? Anyway, we have started with the least invasive technique that doesn't require very much effort and that I'm not describing here. Then I put him on the potty seat and he sits there, playing on the iPad, happy as a pig in... Well, anyway, he sits for about 20-30 minutes and *knock on wood* then the magic happens and he goes and that's it! We throw a party, he yells out, "I poop on potty!!" even though he has no real clue about what this means and then I put him to bed and call my mom to celebrate and send disgusting pictures to my poor sister who also celebrates.

This may all be premature as it's only day four of the Training and it's only been the last two days that the magic happened, but I have high hopes. He wore one diaper all day long! It was clean! Like underwear!

Underwear, dude. It's a comin'.



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.




Wednesday, September 26, 2012

Relief

I can't tell you what it took, what extraordinary measures I had to take, but Kingsley is clearing up. I truly can't say, because one day Kingsley will not be two years old and he will never, ever want to hear these details, nevermind know that the whole interweb heard about them. So, I'll just say things are getting better and I never ever ever want to go through this business again.

And like a miracle, my baby boy is back. Instantly.

My sincere apologies go out to everyone who has encountered Kingsley in the last few weeks. That was not my little boy. The scowling, angry, grouchy, moody, yelling kid has finally left the building.

We're not through the woods yet, but I can see the light.

THIS is what he's been doing all afternoon: playing tricks, being sneaky, making jokes.

video

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.
Related Posts with Thumbnails