Showing posts with label detethering. Show all posts
Showing posts with label detethering. Show all posts

Sunday, February 2, 2014

Schmanniversary

It was Groundhog Day for about 19 hours before I realized that Groundhog Day was an anniversary for Kingsley. It's been three years since his tethered cord surgery (surgery #4 for him). I probably wouldn't have remembered at all except that when I told King we had to go to the doctor tomorrow he said he didn't want to have another surgery.

It happened last week also. And the whole week after his birthday. It's not that I forgot that these dates were big deals in Kingsley's life once, but just that I didn't remember. I didn't remember the anniversary of the first day I held him. The day he got his shunt (surgery #2 - I remembered the next day). The day he moved out of the PCCU. The day Jeff first held him. The day we brought him home.

For his first three birthdays, the events were burned into my head. There were a few days leading up to his birth, then the eleven days afterward, I would relive the moments in my head as the anniversaries rolled by. I remember the dates of his surgeries. The anniversaries of the days he came home, every time. I wondered if I would always remember them... I guess not.

His first year seems a long time ago now. Life rolls on. Things just get better. :)

Wednesday, February 20, 2013

The Back Bone's Connected to the...

We got in to see ortho! I was sent an email this morning about a last minute opening this afternoon. Craziness, but we made it happen.

I really like our ortho. She's new, but seems to really know what she's doing. SB isn't the most popular diagnosis these days, so I sometimes get the impression that some of King's specialists or people are kind of dusting off cobwebs to remember SB details when we talk. I don't get that with her, she asks the right stuff and looks at the right things.

Anyway, she was not concerned with his back. She said a degree or two a year is to be expected and he looks alright to her. She and I talked over tethered cord, what I'm seeing, why she's not concerned about that. Lots of relief. She sent him for x-rays afterward (which he did not like) to see how much he's changed/if he's changed. She also recommended that his wheelchair get adjusted since the kid is growing and this is likely impacting his stability, which is totally true. We also talked a bit about long term scoliosis, what it involves, what it would look like if there were actual problems, what those problems would mean. Nothing I need to worry my little head with now.

She also checked out his feet while he was there and asked about his ballerina foot and whether it was getting worse. She thinks that he will likely need a lengthening in the back of his ankle at some point, to keep his foot at 90 in shoes. Right now, his AFO's are doing the job.

So, phew! She's going to call us if there's something on the x-ray we need to know about, but otherwise, let's get on with the move!! :)

Friday, February 15, 2013

When it Rains...

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

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

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

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

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

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

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

Saturday, December 3, 2011

Round Three?

The MRI is booked for December 15 with a follow up appointment on December 21, temporarily. They're still working out times since they want to do a full head and spine and that will take two appointment slots instead of the one they had originally planned on.

In the meantime, I have at least a dozen points in every day where I am convinced that we cannot possibly wait that long, something is wrong NOW. And then I have at least a dozen points in every day where I am convinced that I am overreacting because Kingsley is clearly as awesome as ever and not a thing is wrong with him.

Our concerns are that he had some sudden bowel and bladder changes in late September, followed by some rapid tightening in his hamstrings and odd twitching in his calf (tethered cord). He's also banging his head and grabbing/hitting his ears (shunt). He's waking at night, crying and he's much more irritable than his usual cheerful self (shunt). He's sleeping less and is eating less (shunt/Chiari). His language peaked and then has regressed, yet again (no clue). He's arching backwards in his Bumbobile and stander (Chiari).

On the other hand, he's teething and has been for about a month. His molar FINALLY broke through last night. He grabs both ears equally (his shunt is behind his right ear) and hits his head when he's frustrated, not really out of the blue (common in kids without language). His bladder stuff is all back to normal, his bowel stuff resolved when I dropped his PEG dose a little bit. He's fascinated with exploring his world now in both sets of wheels and seeing it from all angles - now that that is finally possible. When I'm with him or the girls are home, he's his usual self. When I go check to see why he's crying at night, he's all smiles and snuggles the second I get him in the rocker with me.

I just. don't. know.

While I am not remotely looking forward to putting him through another MRI, I am anxious to get answers.  My house is benefiting from the stress, but my wallet is not.  ;) I'm blazing through my list of Things We Need Done Before We Move. Christmas shopping is nearly done and if all goes well, the Christmas tree/decorations will go up in the next couple of days. I need the distraction or my mind takes me to places I can't function in. It doesn't matter. Either he's fine or he's not fine, but he will be.

Tomorrow, we meet Santa. I predict a lot of screaming. :)

Wednesday, November 30, 2011

All I Want for Christmas...

My two nieces and my sister watched Never Say Never, the Justin Bieber movie. And when I say 'watched' I mean they had it on Netflix and watched it about a dozen times in about as many days. And when I say 'a dozen' I really mean three. They became big Bieber fans. So, when I was at Costco a couple weeks ago I was thinking of them and I grabbed Justin's new Christmas CD with the intention of listening to it a few times and maybe ripping it for them passing it on to them. However, it turns out my nieces aren't the only ones who love "Justin Beaver" because all three of my children have clung to this CD like it's the best music in the world and they insist on listening to it all. day. long. Truthfully, I don't mind. I love Christmas music and if you haven't heard the CD it has a remix of Mariah Carey's All I Want for Christmas which is one of my favourites.

Over the last couple of weeks while this CD has been on repeat, the words of all of his songs have blurred together and played in my head even when it's not on. There's one message that comes up over and over in so many of the songs: All I want for Christmas is you. Tell Santa I'm good this year, my present is standing right here. If you're the only thing I ever get for Christmas then everything I've wished for has come true. I realize Biebs is probably singing about a girl, but when I hear these words, I look at the kids and I think: YES.

I have been walking around the house, just savouring the drawn out Holiday buildup. The lights are up outside, Buddy the Elf has returned, the mail has gotten really exciting, we're going to put the tree up this weekend, lists are being made and checked twice, pictures are done... we're in the Christmas spirit and there's this feeling of just soaking it in and enjoying it all. A true appreciation that we are so incredibly lucky to all be home, to all be healthy, to all be together.

When I was thinking last week about Kingsley being in the hospital a year ago, I remember the rush to do things in the week leading up to his surgery. I remember doing my online shopping from beside his hospital bed. I remember the heavy reality that with one sudden fever, we could be spending our Holiday season in the hospital instead of at home. Getting released on December 2 was one of the best Christmas presents ever.

And the year before that with the sudden scare and hospital stay mid-December before he was born.

We just don't have a lot of luck with this month. Kind of like September.

Which is why I have one wish for Christmas. Just one.

I want Kingsley to be home. 


Because what I didn't want is for his PT to have concerns about his legs. And I didn't want the concerns of September to be brought up again. I didn't want to see their faces when I mentioned some things I had noticed. I didn't want to see the look on my moms face when I told her the concerns that people are mentioning and see that she has the same concerns.

I don't want to hear back from the neurosurgeon and I don't want to know what the inevitable MRI is going to show. I want to continue appreciating that we are all home together and not subconsciously start planning how we are going to get through this month if we get bad news and have to be split up.

It could be nothing. It could all just be explained by... something else.

Or these changes could all be related.

I think we might need a Christmas miracle on this one.


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.

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

Healing

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.

Saturday, January 29, 2011

Detethering

Yep, there it is. Surgery number four is booked for Wednesday.

I talked to his nurse yesterday about the results of the MRI. What I wanted to hear was that there was a lot of space and free lowing fluid through the decompression site and a reduction in the size of the syrinx and that the tethered cord was now responsible for the loss of functioning. A quick snip and all would be restored. That may have been a pipe dream, I don't know. Sure wasn't what the case was. There is some space that has been opened up at the decompression site, not a ton, but more than there was the day after surgery. Enough that they are not interested in going back in right now to open it up more. The syrinx has not shrunk. If anything, it has grown. That was a huge pill to swallow.

Today I talked to his neurosurgeon and the consensus is to go in and do a detethering. I've been reading up on tethered cords and it's starting to make more sense to me now. From what I've read, a tethered cord can cause fluid build up along the spinal cord.  Hopefully, this is the cause and once fixed, the syrinx will shrink or at the very least, the detethering restores some functioning.

The average spinal cord dangles down and ends somewhere between L2 and L3, depending on how old you are. Because of the Chiari, Kingsley's brain hangs down to C3 in the top of his spine and ends down... I forget where. I'm looking at the MRI image from last time and it looks like she has it circled in the high sacral area, about where his defect was when he was born. That's about 3-4 vertebrae lower than it should be and it stuck there by the scar tissue. From what I understand, this tethering stretches the spinal cord like an elastic. The difference between it and an elastic is that it's not supposed to be stretching, it's supposed to be dangling and this stretching causes damage to it.

The surgery will be 3-4 hours long (shorter than the decompression) and will involve the dr going in near the original scar from when they closed his back. His scar will now be a bit longer/higher than before, which is too bad. Currently, it's hidden underneath his diaper. When he's swimming or topless for some reason, you can't see it. I liked that, for his sake. Although, really, we're sort of beyond the point of hiding his scars anymore after the last surgery.

He'll be in the hospital for about a week, on his tummy for the first few days. His dr says he will recover faster than after the closure because he's older now. The other good news (in my opinion!) is that the baby/kids wing of the hospital has been moved and the nightmare we had last time with the noise and lights and people will be avoided because it's all private rooms! YAY!!

The only wrench in this plan is that Kingsley (and I) are currently sick. The girls have been sick all week and it knocked us out yesterday. He's got a low grade fever, he threw up twice and he's not sleeping well. I know, half of you automatically went: EEEK!! SHUNT!! ;) Thank goodness we got that MRI done or we'd be sitting in the ER right now. I'm quite relieved to have his first real 'sick day' without having the added panic of wondering about Billy (that's his shunt's name). I'm going to take him to the walk-in later today to rule out an ear infection so that he's on his road to health by pre-admit on Tuesday.

The surgery news really hit me hard yesterday. I knew it was coming, but I was still holding out for that miracle. Today, I'm in go-mode. I'm planning.  I scrubbed my house from top to almost-bottom (I wore myself out before the floors got done), I'm making meal plans, grocery lists, lining up babysitters, talking to Rachel and Cordelia about another week away from them.  Life is on hold again.

And just so I remember later to follow up - I read something last night about scoliosis and tethered cords. No one has ever mentioned it in regards to Kingsley, but he leans all the time to one side. I've been told it's not a hip-thing, possibly a neurological thing. I wonder now if it's related to the tethered cord. Or perhaps I should stop reading.

Friday, January 21, 2011

DING! Round Two...

I kind of like data, so I'm sure it's not surprising to some of you that after seeing the neurosurgeon again last week, I started taking data. Data is nice. It's objective. It is what it is. You can't argue with data. So, while Kingsley is having his diaper changed, the same time every day, roughly the same length of time, I watch his legs and count the kicks. Nine days of data.

The trouble was the operational definition. First, I counted his kicks, when he pulled his legs up with his thighs perpendicular to the floor.  Then, I was looking at just pulling his legs up. Then moving his legs in any way. Then twitching. And no matter how many times I changed that operational definition, the numbers still kept going down. You can't argue with data, even when it's lousy.

I've been working on his sitting as well. You would think that after a couple of weeks, he'd be even stronger, but that's not the case. He leans more, he uses his hands for support more.

I called his nurse today after finding excuses for the last two days to put it off. They're going to try to fit him in for an MRI next Thursday. We have to go through pre-admit again on Monday.

And so it begins again...

His nurse tried to explain what they are thinking is happening, but I had one of those rare moments where my brain just stopped functioning and I only half heard and understood what she was saying. They're going to check out his shunt, obviously.  Otherwise, I think the assumption is that the decompression was effective and won't need to be repeated, because he did have improvements. I think they think that there's something else at play, that 'something' being his tethered cord.

I'll sidebar for those who don't speak SB-ese.  Most people with SB have a tethered cord. Your spinal cord is supposed to dangle inside your spinal column. Because of all the fun stuff happening with Kingsley's spinal cord being open and the Chiari and yadda yadda, his cord hangs lower and has gotten attached to the scar tissue in there. They're thinking that they may have to go back in to his original scar area, where the opening was when he was born and ever so carefully slice the spinal cord away from the scar tissue so that it dangles freely again. A tethered cord doesn't always cause problems. If it does act up, it's usually during growth spurts like puberty. I don't think it's common during babyhood.

Clearly, I need to ask more questions. I don't understand what is happening and it is scaring me. Terrifying me. I'm horrified by the thought of more surgery. I'm scared they'll find an answer. I'm scared they won't find an answer. I'm scared of things I can't even put into words.

And all the while, my little boy doesn't have a clue that this is going on. He's showing absolutely no other signs that something is going wrong. He's chatty (added Dadadada and Nananana to his vocab), he's eating and even starting to take some milk from a sippy cup (ALLELUIA!!), he is still Mr. Social and Flirty and most importantly, he's happy.

He's also turning into a little techie.  See that focus? My phone is the new primo cath toy. ;)

Wednesday, January 12, 2011

Let's All Hurry Up and Wait!

Yesterday, Kingsley's PT and new PT-to-be came to hang out with the cutest boy in my world and I asked about his legs not moving much again. They watched him, played with him, were stunned at his progress in sitting and tummy play in one short week, and then reluctantly agreed that his legs were pretty still compared to a week or two ago. I called his neuro nurse and left a message.  I held my breath and stayed off the phone until 6pm, anticipating a call back, but it never came. I relaxed. A little bit.

This morning, I didn't even think about it. Kingsley had another appointment, this time with a Gastroenterologist (poop doctor) and while we were waiting, his neuro nurse came by and asked if we had time to meet with his neurosurgeon afterward.... wahn wahn waaaaaahn. :(  Nothing too noteable - it is still too soon post-op to do another MRI and see if anything has changed for the better or worse, so we have a follow up appointment in one month and I am to watch and see if anything considerable changes in the time being. If there are big changes for the worse, I am to call and bring him in earlier. Could be a fluke. She mentioned the S- word. This time it was 'detethering surgery'.  *hurk*

And as usual, Kingsley continues to impress in other areas while this one little thing keeps bringing him (or me, really, he's happy as ever!) down. His gastro doc wants to see if he can go without PEG (Miralax/Restoralax depending on where you live) and do something more natural, so we are going to start giving him a tsp of ground flax seed at each meal and gradually decrease the PEG. He says Kingsley has some tone, so there is a chance at that stuff not being as much of a problem... if you don't know what I mean here, that's probably for the best. ;) 

And as usual, the resident did feel the need to ask me if I took folic acid when I was pregnant. I am sure this is vitally important information for a gastroenterologist resident to know - that is relevant to his pooping, right? Yeah, thought so. Gee, I wish more people felt the need to ask about that.

 
So, here we sit. :) More waiting, more wondering. No real answers. Possible surgery. We've been here before. I really wish that this road was simpler. Is it ever simple? At least we're sitting pretty, har har.
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