Showing posts with label urology. Show all posts
Showing posts with label urology. Show all posts

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.


All. Day. 


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. ;) 


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, 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.) 

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. 

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.

Friday, July 27, 2012

The Buckets Continue

We have crossed off a bunch of stuff again on our summer list of things to do. It has been an insanely busy two weeks, where I have wished numerous times that I had a nanny so that I could stop harassing the grandparents to babysit twice a day, every day. Our house is in full throttle renovation-mode and our new house is in full throttle picking-the-details-mode. As if that weren't enough, toss in a handful of doctors appointments for Cordelia and I, PT appointments for Kinger and I, and a day at the hospital for routine tests for Kingsley. Can we go on vacation now??

fish tanks are very distracting when you have to wait forever to get called in

Anyway, here is the fun stuff that we've been doing:

21. Pretend Makeup: I haven't actually given this to the girls yet, but I have made it and got it all ready to break out at the perfect moment of insanity. They love to play with my old make up, they love to do/pretend to do face painting. I *think* this is going to go over well. At least Kingsley will one day thank me, I'm sure.

22. Play-doh: the ol' stand by. I'm trying to desensitize Kingsley to the feeling of stuff on his hands. He freaks out if he has ANYTHING on his hands, which is crazy making for me. 

23. Crafts for Grandma: my mother in law gives the kids pink flowers on their birthdays every year. This year on her birthday we did the same! 

it's their hand prints!

24. Jello: I take no credit, I found this in one of my pins somewhere. I hate jello, I think it's rather gross and I associate it with vomiting. Playing with it seemed like a good idea. I wanted this to be one of those desensitization things for Kingsley, but the girls were driving me bonkers one nap time so I brought it out early. It got disgustingly awesome. Afterward, their hands were completely dyed red, which reiterated my distaste and decision to never eat this nasty stuff again. 

25. Mini Volcanoes: I think everyone and their uncle has done this pin, except us. It had so much hype and build up that I was certain it was going to be a bust. We finally got around to doing it and it was a 5 star success! All three loved it and there was a solid 40 minutes where the three of them completely got along. That's a rarity.

26. Ice Block Toys: this also had a lot of build up. Rachel saw me pin it ages ago and has been begging to do it since. I finally got around to doing it. Another winner! It was a good morning under the tree on the front lawn. The 12 year old neighbour came over with her 2 year old brother and both were intrigued and wanting to play as well. Not quite sure why, but this was a winner. Save it for a HOT day to facilitate.

27. Catch bugs: there was a moth in my kitchen. The girls are in love with ladybugs, butterflies and by default, moths. I'm hoping Mothy lives until the morning when they've promised to release her into the backyard.

28. Shaving cream: not sure where I saw it first, but I thought playing with shaving cream would be another way to desensitize Kinger a bit. Other kids love this! Mine did not. Kind of a fail. Kingsley freaked out and wanted nothing to do with it.

29. Swimming: I cannot believe I have only been in a bathing suit once this summer and my kids weren't even with me. This knee is slowing me down. Thankfully, my mom and Jeff's mom have taken the girls swimming. Pretty soon, I'm going to take them all. 

30. Date Night - no kids! For his birthday, Jeff wanted tickets to an annual outdoor concert downtown. Four bands were playing, but he was only interested in two of them. We don't get out much, so it was fun, even though it poured partway through. 

The coming week will not be very exciting, I'm afraid. I am in Olympics mode now. The Opening Ceremonies were awesome and I'm so excited for the games to begin! I'm doing my best to get the kids hyped up. So far, Kingsley is not impressed. 

Wednesday, December 7, 2011

How Much Can I Squeeze into One Post??

Well, life doesn't stand still just because you're waiting for an MRI to happen and tell you whether or not your little corner of the world is going to get hit with a bag of coal for Christmas. And while life has continued, we've been dipping our toes in Christmas fun!

For starters, we got our Christmas pictures back. In case you haven't noticed, I do like pictures of the kids complete with coordinating outfits and all that stuff they will one day hate me for. This year, I could only laugh. Their outfits are gorgeous, if I do say so myself. However. Kingsley was in the midst of a cold when photo day arrived. He woke up with dried snot all over his face (I know, you're wondering how my little rockstar could be anything but gorgeous, right? ;)) which left dry red patches everywhere. Cordelia was also grouchy and tired. Rachel was my usual princess. Add those three elements together and you get this:

Yeah, I don't want to spoil it for you if you are on my Christmas card list, but that's what you've got coming to you.

We put up the Christmas decorations, which sparked Rachel's annual roll playing of the birth of Jesus. She's been doing this the last three years. It has improved. The first year she wore an ice cream tub on her head as the halo and was usually naked except for a blanket around her waist. She's clearly taken a page from Linus's book with the blanket and the tie. ;) We all get to play parts in her story. Cordelia is lucky if she gets the roll of Angel (think: Gladys Herdman). Kingsley is usually a barnyard animal of some kind. I think the bunny there is favoured as Joseph. Nudie Baby (that creepy naked baby in Rachel's arms) is always Jesus. My favourite part is when she waddles around with Nudie Baby under her dress looking for a place to stay.

I was nervous about how the tree would go with Kingsley on wheels this year. So far, he has nothing but love. He wheels right up to it and stares in awe. Loves to delicately touch the ornaments and basically try to live inside the tree. I know the feeling, I used to love lying under the tree when I was a kid. It's so pretty. Even when it looks like Christmas threw up on it.

We went to a family Christmas party and met Santa. Like last year, Kingsley and Cordelia wanted no part of it. Also like last year, Rachel snuggled in and would've happily sat there chatting with him all day if it were allowed. Kingsley amazed everyone with his wheeling skills. He zipped in and out of everywhere! I love my little mobile man.

He looks like such a big kid here, eating pizza with his sisters like it's no big thing. 

He was enthralled with markers. Has no interest at home, but here they were the Best Thing Ever. Isn't that always the way?

I also had the very cool opportunity to participate in an online cookie exchange via a guest blog! I'm all kinds of famous now. ;)  Have a look: Maija and I have known each other for about half our lives (*choke*), since way back in the day when she dreamed of being a writer and I dreamed of stealing her answers on Sir Gawain and the Green Knight. She still is an amazing writer, as you'll see if you snoop around her blog a bit. 

Speaking of famous, Kingsley and Cordelia have once again decided that showing off on websites and on letterheads is a bit too run-of-the-mill for them. So, now they are in a commercial spot for a fundraiser for our centre. 

I think that about sums up the excitement for right now. In business news, Kingsley's having some wonky urological things happening again, but his head banging stopped as soon as his pesky molar popped through.  We even had a few days where he was babbling up a storm and all those lost consonants were back. Constantly keeping us on our toes, this one. Four more days, then we'll see. 

Thursday, September 29, 2011

Oh, September, How I Hate Thee...

I had four days left in the month, just four short days and we would've been free from the grips of the Month That Hates Us. Unfortunately, I noticed some strange things with Kingsley...

OK, I'm getting into stuff you may not want to read about. If pee-pee talk is gross, skip ahead to the picture of Kingsley while everyone else reads on ;)

Last warning.

OK then...

So, Kingsley started wetting his diapers. A combination of meds and bladder things means that Kingsley doesn't often wet his diapers and if he does, it's not that much. But three days in the past two weeks, Kingsley has SOAKED his diaper at night and actually even leaked. Daytime diapers were also noticeably wet. So strange. He has even peed on me three times which he's done a total of twice in his entire life before this.

Naturally, I emailed one of his nurses thinking I'd just give them a heads up, figuring maybe he just needed a med adjustment or something. Instead she asked if he could have a UTI or said maybe this was a sign of a re-tethered cord.

Wahn-wahn waaaaaaahn... As Rachel would say. Obviously, not what I wanted to hear.

Bowel and bladder control are at the bottom of the spinal cord, so they are often the first to change when something is happening. If his cord is retethered and is causing problems, he'd need to have another surgery like the one he had in February.

(the Elmo-thing sort of caught on. ;) this smile is brought to you by the letter E and the number 1... and the fact that Elmo's World had just come on TV the moment before I took it)

We could still be fine. I've taken in a sample to be tested for an UTI and I'm waiting and hoping it's just something minor like that. Or maybe it'll just go back to normal and be a random blip. Or maybe he really does need a medication alteration. Or maybe the September curse is hitting us again and this is the start of another very stressful autumn. Or maybe he'll restore all functioning starting down here at the bottom and working up?!?! Oh, come on, I'm allowed to still believe in miracles. ;)

While I wait for results and try to figure out what comes next, we are doing some fun stuff around here! Kingsley is blowing my mind with some of the awesome things he's been doing lately. Have I mentioned that he's a rockstar? Yeah, he is.

Wednesday, November 17, 2010


Just a quick update to let you all know that Kingsley's urodynamic study went amazingly well this morning! It was scheduled for naptime, but there was so much going on and such lovely ladies entertaining him at the start that he didn't seem to be missing it much. He got all tapped in and monitors stuck on, no problem. The test involves putting a probe down yonder and a few sticky monitor things on his hips/thighs to measure... what is it? Flexion? Basically, to see if he's clenching and pushing I think?  Anyway, then a catheter with sensors of some kind. They empty him out, then slowly fill him up to see what happens to his bladder, taking x-rays throughout the procedure.

I'm not sure what went wrong, but after he was emptied, there was a lot of mumbling about something not working and numbers not being what they should be. About that time, Kingsley decided he was about done with the whole thing. He screamed and cried for the next looooong half hour. Poor kid, his eyes were so red and he just kept looking at me, begging me to pick him up and lull him off to dream world. Not so much fun. But, then things on the technical end started working, his bladder started filling and after a bit, Kingsley seemed to realize crying was futile. Either that, or he was so exhausted that he didn't have the energy to keep it up. He was quiet for the end of his test and was right cheerful while we waited to speak to his urologist.

The results were fantastic. As good as they could possibly be, short of telling us he didn't have a neurogenic bladder anymore that is. ;)  No reflux at all (urine sneaking back up to the kidney's is a very bad thing that we will always have to watch out for), bladder was relaxed and easily holding more than a kid his age usually would hold - good sign for staying dry between cath'ing later on, or 'social continence' as it's called; fancy speak for Kingsley getting to wear underpants. The med he's on is doing what it should be doing.  He's also allowed to be weaned off the prophylaxis antibiotic that he's on since he hasn't had any UTI issues. If he gets one, we'll treat it and put him back on it. I feel like there is suddenly a lot of pressure on my hand washing skills!

That's it! We'll see the uro again in clinic in 4-6 months as long as there aren't any problems. WEEE!!! Go Kingsley! One big test down, one to go! :)

Thursday, November 26, 2009


Three big things. One is that I had an MRI today. I'd never seen MRI images or anything before, so I had no idea what to expect, but once again my amazing OB outdid herself. She brought Jeff and I right down to the Doc that was reviewing the images and had him show us and explain everything they see.

It was actually a little bit breath taking. I got to see all of him inside all of me. So incredibly cool. It was almost like peeling my skin off and having a look inside, only less gory. You can see all of his organs and all of my (squished) organs. The placenta is right there. His feet were practically in my bladder. He is gorgeous.

Anyway, he showed us his spine and you could see plain as day how it was all normal up to a spot. He then did a cross section to show us vertebrae by vertebrae and we saw L3, L4, totally normal. Then L5 had some splitting or something going on, but not fully defect-ed. S1 and S2 clearly have the defect and are open. The sort of cool thing was that in cross-sectioning him, my spine is also in the picture and you can compare the two. Seriously, so cool. The Dr's said they don't think L5 is effected, but they can't be 100% sure until he's born. That would be amazing if it wasn't, so cross you fingers and eyes and anything else that he functions lower.

His ventricles (in his brain) are getting a little bit big (with fluid), but there isn't pressure, so they aren't calling it hydrocephalus. They expect them to get bigger, and anticipate a shunt, but not that there will be any problems with it.

The second big thing is the whole induction/c'section debate. All of the OB's at the hospital that my OB presented my case to agreed that an induction would be fine and cause our son no further complications or damage. So, full steam ahead. Then Jeff veto'ed it and my OB said we both have to agree, so it was back to a c/s. Then Jeff changed his mind and said it was up to me. Then (you may have caught), we discovered that our boy is breech again. Back and forth, back and forth. I'm leaning toward a c/s at this point, even if he flips. It's predictable, for the most part. I can plan for it. Even though it still makes me nauseated to think about.

One last exciting thing was finding out about a new spinal nerve re-routing surgery out of China being trialed in the States right now that our son could potentially get when he's 6yo+ that will allow him to have bowel/bladder control. Hopefully, they'll work it out in the next 6 years and it'll be routine by then.

And that's about it. I'm finding it better if I stop reading stuff about SB now. I know what I know, and I'd prefer that our son just teach me what else I need to know. Reading about other kids just leads me to panic about the 'what if's' and best/worst case scenarios. I'm half eager for him to just get here and get on with it, half prefering to make these last weeks drag on forever and not have to deal with it. I'm not sure I'm ready.

Monday, November 16, 2009

Blah blah blah

Having a rough week for some reason. The last neuro and OB appointments are lingering. They didn't even tell me anything new or different, but it's still blah. On Friday I was the discussion at OB rounds or whatever at the hospital - whether they should be rethinking the automatic c/s thing. My OB called today to tell me about it, but I have to call her back tomorrow.  I'm absolutely terrified of a c/s. Why do people choose it??

Anyway, I'm getting huge. I can sometimes feel where he is and identify different body parts. Freaks me out a little. I can feel his back/bum and I just think: this is where it is. Beyond surreal. So strange. I think getting bigger and starting to do things to get ready for him are making it real again on a daily basis. I'm trying to think about it in a good way. Mostly I'm terrified. I'm setting up a meeting with a social worker. It feels like the last step in admitting things, for some reason. She's at TVCC and it will mean I'm officially a client there, not an employee or volunteer.

I found out about a new surgery that they've been doing regularly in China and starting more over in North America. It sort of reroutes the nerves in the spine that are needed for bowel/bladder control. He wouldn't be able to get it until he's six, but it would mean more than just social continence. He could actually have control. That would take him so much further toward 'normal', especially from a peers-perspective. I just hope he'll be eligible and that it would work. So far away though, who knows what could happen before then!

Friday, October 2, 2009

Appointments Begin

We met with the neurosurgeon and neuro nurse this past Wednesday and had a whole bunch of questions answered and got some new information. The only really bad news that we heard was that the referral said the lesion was lower lumbar/high sacral. We had previously been told that it's only sacral, so hearing it was higher was not pleasant.

The nurse confirmed from the u/s pictures and the referral that as of 2 weeks ago there were no signs of hydrocephalus or club foot/feet. But the Chiari II Malformation (odd head shape that was flagged in the first ultrasound) is present, which means that hydrocephalus is highly likely, especially since about 85% of kids with SB end up with a shunt. It's just a matter of time, but the later the better. The feet being okay had something to do with the lesion being lower or smaller or that his feet are moving, but I forget exactly what. It just meant something good, so we'll take that!

The nurse was so helpful regarding answering questions regarding what would happen in the surgery and the days after. She explained how I'd be able to breastfeed still, how he'd need to be positioned and held when we're able to do that, whether we'd get to see him (briefly, hopefully) or hold him (not likely) before surgery, and what he'd be doing in the meantime and with whom. Even though my OB is at St. Joseph's, he'll be born at LHSC which is where his surgery/ies will be. If he needs a shunt we'll see about it after his back is closed.

She explained his bowel/bladder stuff. Not fun stuff to hear, but she explained how they would test his abilities and what they'd be looking for while still in hospital. She said that if he's sent home without a catheter it doesn't mean he'll never have one and vice versa. Like his leg functioning, it's all wait and see and nothing we can really predict or do anything about until he's born. She explained how toilet training would differ for him.

She was very optimistic though about his functioning and kept referring to 'kids whose lesions are so low like his' and things like that. It doesn't sound low to us, but she'd know better!

The neurosurgeon herself was also very nice and helpful. They spent over 2 hours with us! Our neuro seemed an awful lot like my OB in mannerisms and personality, which I liked. She has recently come from Sick Kids in Toronto and before that practiced in Europe, where she's from originally. They had never before been asked about banking cord blood (which we thought was weird!), but said they'd search for any research out there being done with SB/stem cells, if there is any, and let us know.

I think that's about all there was. I have an u/s and OB appointment on the 16th, where we'll probably hear that the hydro has started. Or maybe not! We meet with the neuro again at the end of the month. They've also put in a referral to the SB clinic at TVCC, so we'll get connected with them sometime soon.

Jeff and I are doing alright. We've been reading a lot of books, talking to people, and connecting with some other families online (although things are pretty different in the states - they're all gung-ho on the prenatal surgery which I wouldn't do even if it was an option, which it is not). I have found a forum which has been very helpful to read about a whole bunch of other parents' journeys.  It's been a pretty heavy 2.5 weeks, but everyone keeps saying pregnancy is the hardest part and that once he's here and there is less unknown/more adorable baby boy, we'll be just fine. I can't believe he'll be here in 14 weeks or so! Keep him in your prayers in the meantime.
Related Posts with Thumbnails