Showing posts with label decompression. Show all posts
Showing posts with label decompression. Show all posts

Saturday, November 10, 2012


I realize I'm dreadfully overdue for a Halloween report, to the point where no one even cares about Halloween anymore! But, some big things happened on Halloween, so trudge through it.

Firstly, Kingsley rocked his boat. He has been asking at regular intervals to go to a Halloween party and anything remotely resembling a pirate his him growling: "I'm a piwate! AARGGH!!" He was a huge spectacle (like that's new) and everywhere we went on Halloween he was fawned over. I'm telling you, wheelchair costumes are unheard of here, to the point that a lot of people did double and triple takes before they realized that it was actually a wheelchair and not just some insane mom putting a huge box on their child and making them walk around with it.

Halloween morning, King had his follow up with his neurosurgeon. The MRI had shown nothing that would cause the eye issues. Great news! Especially since his eyes have gone back to normal...?? We're all a bit baffled. I have photographic evidence, this crazy eye thing was witnessed by a lot of people, it wasn't in my head. Now it's gone and there was nothing to cause it in his brain. His ventricles were a tad bigger, but she has decided that it's because he is bigger and thus, his brain is also. September (and October) were a bunch of mostly-unrelated, flukes that sum up Kinger. Good enough for me!

Except one little blip where she said that at some point he is going to need another decompression because there isn't a lot of space back there. She said we will wait until he needs it, to watch for the signs. Insert knife directly into my heart and twist. Ouch. I'm not thinking about this one. I will deal with it when I need to.

Anyway, next up was a party at his playgroup, home for a nap, and then we got the girls and were ready for Trick or Treating! It was a dark and stormy night, unfortunately. Ever since Rachel was old enough to go out, we have been going Mall'oweening. This has worked out perfectly since curbs, driveways, walkways, and porches are terrible obstacles when you're a wee one on wheels and our malls are accessibility dreams come true. My charming little pirate cleaned up at the mall, to the point where I felt badly for the other kids ;) He got double candy at pretty much every store, despite my protests that a two year old really didn't need *that* much candy. We did attempt a few houses when we got home, which Kingsley was all for, but I was cold and wet and was pretty Halloween'ed out. All in all, a successful day.

Lastly, for those of you who have an interest in wheelchair costumes, Cassie from Beyond Measure has started up a blog to share costume ideas. If you've made a wheelchair costume before and want to share it or if you want to attempt to make one or just like stalking random things, check it out!

Wednesday, December 21, 2011

Christmas Miracle

Kingsley is fine, just fine.

We saw his neurosurgeon today. She said his syrinx is still there, still significant, but stable. She asked a whole bunch of questions about what we've been seeing, what Kingsley has been doing, what the concerns are, what changes he's had. She believes they are because he is doing so much more, using so many more muscles in different ways and so there are some side effects - his hamstring is tight because he's realized he can bend that knee to move around and so bends it (he doesn't have the quad muscles to stretch it straight again). The increased twitching is enervation and conscious movement where before it was passive. He's just doing well.

One small shadow: his Chiari area is a bit tight. She asked about his eating and if he chokes and whatnot. He isn't showing any symptoms that concern her, so no surgery now. She is not keen to jump in and open it up more without a really good reason, as doing so could cause more problems so there's no point in putting that risk out there without a very good reason. The same with putting a shunt in his spine to drain the syrinx - there are no guarantees that it would help the situation and no guarantees that it wouldn't make things worse. So, while everything is stable, no surgery. If he has significant changes, we'll have to look into those things.

More good news! His brain is perfectly wonderful. His shunt is working perfectly. There is nothing there that would be causing language problems, as far as she could see, so the delay is just a delay that he will work through, as far as anyone can tell.

This is all pretty much beyond what I could've hoped for. I was imagining terrible things and not a single one of them came true. It's like Christmas morning, his birth day and winning the lottery all in one.

Uploaded from the Photobucket iPhone App

This afternoon, my sister came home to celebrate with us. Really, they came home for Christmas, but this was a pretty good second reason. ;) Christmas can officially begin again. All is well.

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. :)

Saturday, November 26, 2011

The Big Scar

I do have some exciting things to post about, but before I get to that, I just wanted to post a couple pictures of Kingsley's decompression scar. My last post had a big ugly picture of his scar at a couple weeks post-op. It's dreadful, isn't it? It's my own son, my amazing rockstar and it still gives me the shivers to see that enormous, raw scar down the back of his head and neck.
This was just before getting the stitches removed.

This was just after getting the stitches removed

Fortunately, it looks nothing like that now. I wondered for a long time how it was ever going to heal and become less noticeable or if people would forever be staring at the back of his head. It did! I think the only people that notice it now are the people who cut his hair, but even they have never mentioned it other than to spend a few extra seconds parting and brushing in the back when they think I'm not looking.

So, for those of you who don't often get to see Kingsley's head in real life, here is how it looks now:

It's so amazing what the human body can do, isn't it?

Thursday, November 24, 2011

One Year

One year ago right now, I was in this room

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

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

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

Waiting to run and see my baby.

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

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

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

Saturday, February 5, 2011


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

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

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

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

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

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

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

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

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

This morning, I was greeted with this:

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

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

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

Wednesday, February 2, 2011

Out of Surgery

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

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

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

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

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

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

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

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

Friday, December 10, 2010


We were told that it might take up to three or four months to really see what sort of a change the big surgery would have with regard to Kingsley's leg functioning.  I imagined a very long winter spent hovering over Kingsley's legs watching every flinch and twitch, praying with every breath that I would see a change.  I feel like that was pretty much how I was in the hospital there, holding his legs with both hands, waiting for any sign of pressure against them.

But since we've been home, the hovering and holding on hasn't been necessary at all. You can SEE the movement. All. Day. Long.  

Each diaper change is getting more and more ridiculous as I find myself sitting there blinded by tears and a huge, dopey grin.  One of the things I remembered was that I used to have to hold Kingsley's legs while cath'ing him so that he wouldn't get them in the way. I don't remember when it happened, but at some point I stopped having to do that. Instead, I was propping the bottle (that I drained the cath into) behind his knee and walking away to get a diaper, a change of clothes, get Cordelia out of trouble or some other thing that needed my attention. The bottle never went anywhere because he just wasn't moving his legs.  Since we've been home from the hospital, he's knocked the bottle over three times and soaked himself. Now I hold the bottle. 

In my head, I've been knocking off the months, working backward. I've been watching like a hawk, trying to remember what I've learnt about what muscles do what action. His trunk is also more solid again, I'm almost certain. That was something that was getting weak in October and November, just before surgery. Definitely, lifting his legs from the hip doing a frog kick sort of thing. That's good, that's what he had in September, I know for sure. The frequency of movement has increased more than I can really explain. He just moves his legs all the time, where before surgery we would only see him move them once or twice a day if we watched closely.  I barely remember seeing him ever move this much.  

Here's where I love this blog and the way things get chronicled because I've been obsessively watching the video in this post:  since September. He wasn't doing this in September. In fact,  I think this was pretty much the last time I got any good movement from him on camera.  I took the video June 2, 2010 and I remember feeling slightly fraud-ish even posting it because he so rarely showed that much movement at all when I posted it; it felt like a misrepresentation of his abilities in early July. Today, when I was changing his diaper just before lunch, he was almost there. He was doing almost those exact movements on the left side and some of them on the right. I just watched in disbelief as he bent his knee and pulled his leg up, over and over. I could have sworn he also straightened his leg back out a couple of times. 

I feel like it's so surreal. I need someone else to see this movement and verify that YES he really is moving his legs again and that there might actually be quads and hams moving and working. It feels too good to be true! To see this so soon is like a miracle. I just can't wrap my head around it. LOL! I feel that way about everything relating to Kingsley lately! If he's come this far in just two weeks, imagine how far he could go. Can you even imagine?

He also got his stitches out on Wednesday, which means he's gone from this:

 to this:
and it actually looks even better than that now. More stuff I can't wrap my head around. I'm amazed at how he heals. It's both shudder-inducing and awe-inspiring to look at his scar right now.

Wednesday, December 8, 2010


Things are going okay since we got home. I thought (naively) that Kingsley would be all ready to jump back into a routine once he got home, but that didn't happen so much. His sleep has been all over the place, he cries inconsolably, he doesn't look to the right, he has pretty bad separation anxiety and he hates everyone except the four of us... but other than that, he is WONDERFUL. He's so happy to be home, he's healing well, he's waving and blowing kisses and clapping and his eyes have their sparkle back. Our house feels full again.

It's been a great week to be stuck at home recovering. Sunday night it started snowing and it hasn't stopped. I think they're reporting about 110cm or so. The city has been shut down for two days and tomorrow everything is cancelled again. No school, no university or college, no buses, no shopping. Even if we had wanted to go out, our street wasn't plowed for two days and we couldn't! I have not minded being homebound at all. We've been baking, watching Christmas movies, doing crafts, and drinking lots of hot chocolate. I love this time of year.

 it's a hot chocolate mustache 
 back yard and front yard - Day 1 of the snow
 back yard and front yard - Day 2 of the snow

 more crafts
 loving the snow
 staying inside and snuggling with Nana (but notice that he has to be facing me)
reading stories with his girls (Rachel's new thing is hamming for the camera)

Sunday, December 5, 2010

Kingsley's Decompression with Music

"... and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."
  ~ Little Bee, Chris Cleave

I make videos for everything. This is Kingsley's 9 days in the hospital. One more battle scar.

Friday, December 3, 2010


We're HOME!!!

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

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


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

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

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

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

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

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

Sunday, November 28, 2010

Up and Down

Kingsley is doing so much better today, as far as returning to his usual self. He smiled and laughed a bit while we were playing and he was awake for over an hour, looking all alert and adorable. His swelling has reduced quite a bit, which makes him look more like himself. His oxygen is off, but the tape has left red marks on his cheeks. Slowly but surely, every day I am getting my sweet baby boy back.

But, he has had a set back. The incision is leaking a lot and they think now that it's CSF. It's the lower part of his incision, which is on his neck, making it very hard to put pressure on it via a pressure wrap. He's on his back, but turns his head to the side a lot.  I've been told it's still okay for me to feed him and hold him, but now I'm trying to do it with him sitting up more instead of lying across my lap. So far, it's okay. The verdict is still out as far as whether or not he'll need to go back to the OR for more stitches or whether it will eventually close up on his own.  There is also a big fear of infection right now because the leak indicates an opening and also means the incision is wet. I'm on fever watch.

Right now he's sleeping so peacefully, it's hard to believe there is anything out of the ordinary happening at all.

I thought he was giving everyone dirty looks, until I realized his ng tube tape was pulling his lip up. He's less snarly looking now that I peeled it back.

What Happened

I can explain now what led Kingsley to having the surgery he just had and what the procedure actually entailed. He's in a ward room right now, so there are other parents there with their babies. I found myself telling his tale to another mama yesterday and halfway through describing his surgery I just stopped and started laughing. She was in there with her 6 month old daughter who has CP and just got a shunt put in. She just said, "Yeah. It's sort of crazy what our kids go through."  It's hard for someone who doesn't have a kid with these sorts of special needs or medical needs to fathom this sort of thing. It's hard for me to fathom most days. It's literally so far outside my realm of normal that it makes me laugh to think that this is actually happening to my chubby, happy, healthy little boy. Not that it's funny, just that I don't really know how else to digest it all.

Well, Kingsley wasn't doing so well with his leg functioning.  It wasn't just a matter of him not moving as much as expected, but more that he used to move more and now he moves less. We took him for an MRI to find out what might be going on. There was a large syrinx (like a cyst) right down his spinal column, top to bottom almost, putting pressure on his nerves. There was a larger part in the lumbar area (below your ribs) and a larger part in the thoracic area (mid back).  His NS thought that the syrinx had been caused by this other problem he has called Chiari Malformation II. That essentially means that part of his cerebellum is not tucked up inside his head like ours is, but instead hanging down in his spinal column.

The CMII is most often asymptomatic. Kingsley's is asymptomatic - he's never had trouble with it, it just is. However, it's filled up the space at the top of his spinal column and not allowed CSF (the fluid that moves around in your brain/spine) to move from his head to spine and thus caused pooling in the spine, aka the syrinx.

So, the goal of surgery was to create more space there that would allow fluid to move freely and hopefully, in time, allow the syrinx to drain it self or something and ease up on the nerves. To do that, they had to a procedure called a decompression. It has a fancier name - something like posterior fossa decompression, but I may be saying that wrong. If you find this stuff gross, stop reading.
.... okay, I warned you. They made an incision from the bump on the back of his head, down his neck. Then *lalalalalalacoveringmyearslalalalala* they took out part of his skull and part of two vertebrae (C1 and C2) and half of a third, I think (C3) and then put a patch (Jeff likes this part - says they took something from a cadaver's thigh, which may very well be true) of some sort of dura tissue stuff and put it over the place where the bones used to be, but not on as tight. That was sewn in, then everything else (muscle) sewn back up over top.  Ta-da. Big franken-line scar for Kingsley. :(   I hope I explained that all right. 

The MRI on Thursday night showed that there was indeed fluid now passing through around the cerebellum.  Not a ton, but it's there. He also has a lot of swelling happening right now. Hopefully, when the swelling goes down, there will be lots of room in there for the fluid to flow. In three or four months, he'll have another MRI to see how successful it was. Hopefully, between now and then we will see a return of some of the leg movement he used to have.

And that is why my baby is sad. Although I did get a smile out of him today! Just one, but so worth it. He's off the oxygen now and other than seepage from his incision (not CSF), he is doing fabulously well. He's very swollen all over from the drugs he's on, but that is going day by day.

Saturday, November 27, 2010

Day 3 Post Op

He's dopey still. Such a serious face. Nana and I tried to get a smile out of him, but all we got was a "Hm." When he's awake, he's more awake. Interested in playing a bit.  He's still really puffy, especially on his left side as you can see from his eyes. No more leaking though and his feet are a little less swollen. I'll get my smiles yet.

Friday, November 26, 2010


Oblivious of what is to come.

Up waaaaay too early!

Snuggling with Daddy before going in

Our little panic waiting room 

After surgery

Saddest face ever. He mouth looked distorted from the breathing tube and he had red pressure sores on his forehead

His 'computers' as Rachel called them. He was well hooked up.

All his tubes and wires

Day after - looking a little better

Rachel is getting over a cold so she had to wear a mask when she visited

She thought she was the bees knee's. Was sure that everyone was going to think she was a doctor.

Can't go without popsicles! King had nice nurses.

Kept trying to tear off his mask, so he was switched to the prongs. Also better for his MRI to see how thing are going (they are going well).

This morning. Soooo puffy!! They say he'll get better over time, but he'll get pretty bloated from the meds before he'll get better. He's like a little stuffed sausage.

Free hands! No more IV's stuck in everywhere. Getting unhooked and ready to go up to the nursery wing, out of PCCU.

The top part of his incision. Bandages off and getting some air. It's about 4-5 inches long, I think.  There was a bit of leaking at the bottom, but they don't think it was CSF, just blood and yummy stuff like that.

New room up in the nursery wing. A lot less monitors and a lot louder. He's sharing a room with 3 other babies. Single rooms are reserved for all the respiratory kids in this time of year. Booooo.

Snuggled up in his new room.

Today has been eventful. I've hardly had a moment to sit down. Monitors going off, other babies screaming and waking him up, nurses and doctors and specialists coming to poke and unpoke and do everything else imaginable. We got our first hint of a smile when we came in this morning. So awesome to see. But he's been pretty grouchy since. I also got to hold him and breastfeed him this afternoon. He was in heaven.  Would not let me move a muscle or he'd just clench on with a definitive grunt of complaint. It's hard to see him so puffy and uncomfortable, but every day he's improving. He hates the nose prongs and is trying to pull them out now that his hands are free. 

I'm going to go hang out with him for a few more hours before going home. He still has his ng tube in to feed him when I'm not around. They didn't want to trouble him with bottles since he hates them. The feeding team was fighting to get him an actual bed so I could side-lie feed him and not have to jostle him, but no winning that fight yet.
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