Beer Store Shinanigans

Today was the day. That dreaded day that we have been putting off since....October. The garage is so full that I can't get to my car without knocking over a case or two of wine or beer bottles. That and the fact that we're out of beer coming into Superbowl Sunday means only one thing ; its time to take a trip in to the beer store and take back our empties.

This is no small feat considering we have had a collection mounting since before Christmas AND had 20 people at our house for NYE, all of whom started drinking at 1pm in the afternoon. And apparently, according to Rob, "Its my turn". So I loaded the car up- - we filled the entire trunk AND backseat and I drove into town praying that a) I wouldn't get stopped by a cop and b) that there wouldn't be anyone else in the beer store today.

I have to admit, taking back an excessive number of empties to the beer store is an efficient person's worst nightmare. And I'm efficient to a fault. I'm one of those people who walks BRISKLY from my car to the store whenever there are other people around because I can't stand waiting in line behind someone who walked in with me or the whole time I think, "if only I'd gotten here 2 seconds earlier or walked a LITTLE bit faster I would be NEXT in line and not BEHIND this person" Because INEVITABLY, that person, who just barely got in line before me is ALWAYS the person who wants to file a complaint, or use an expired mastercard, or pay with pennies or something extremely time consuming-ly obnoxious like that. Its Murphy's law.

So today it was AGONY because as fast as I was, it still took me 10 trips from the car to the store and back again to get all of my bottles in. So everytime I got in there I had to let people go ahead of me and watch as the line got longer. And longer. And longer.

And THEN because I'm not only efficient, but am plagued by a guilty conscience, by the time I got to the front of the line I felt BADLY that I had 1 Million bottles that needed to be counted and sorted, so I let everyone who was in line behind me go ahead until the store was empty. And even then, the poor cashier heaved a big sigh of annoyance when I pushed my load forward.

But don't worry! My trip into town didn't ruin EVERYONE's day -- as I meekly ducked out of the beer store, 30 minutes later and $25 richer with a replenished supply of beer under my arms, the homeless man on the corner popped up from behind the snowbank. And waving his giant bottle of "something" in the brown bag around he gave me a HUGE toothless grin and TWO THUMBS UP!!!

The Case of the Missing Mum-Mum

We are slowly introducing Toby to his usual foods.  Its harder to do the second time around because a part of me will always believe that the Right middle lobe pneumonia was due to aspiration pneumonia.  For now its just my irrational medical brain speaking - -I'm hoping Toby's wellness will prove me wrong.  And I'm hoping that by me writing it in my blog it won't come true.  But  every time he coughs or sounds congested, that little voice resurfaces and tells me that he's still got something stuck in his lungs.

Its like when you're watching a movie and you see a random scene or flashback and you think, "Subtle foreshadowing..."  Well, if anyone (for some odd reason) made a movie of my life, the one and ONLY exam question that I would remember from medical school would be the Unit 1 CRE when there was a little kid with recurrent pneumonia and the answer was....OBVIOUSLY..the he had aspirated a peanut. Needless to say, I got the question wrong.  Which is probably why it always crosses my mind when  a kid is repeatedly sick or, in this instance, when Toby gets this ridiculously DRAMATIC reaction to RSV and has a radiographically evident right middle lobe pneumonia after weeks of choking on foods in his eager-I-have-ONE-tooth-so-give-me-the-good-stuff ways.

Anyway -- I digress.  Toby does cough now and then, but in general he's doing well.  And we've slowly introduced the foods he used to eat back into his diet.  We know he's not allergic, but we figured we'd wait a bit to introduce "chewing" foods back into his diet.  He was such a cowboy with ONE tooth -- I'm a little afraid of what he's going ot convince us he can take on now that he has THREE teeth.  Yesterday, my mom came up as a last minute request as both Rob and myself found ourselves needed at work, and when we got home Toby was happily eating a mum-mum.  (A baby cracker that is chemically designed to dissolve and be choking-friendly...TOTALLY organic...)  He was gloatingly-not choking on it -- so we avoided the inevitable introduction.

This morning we gave him another mum-mum seeing as he'd had one yesterday.  Unfortunately, it was the last two in the package and they were in pieces so we just dumped the whole thing on his highchair table and let him feed himself.  THe little monster grabbed 2 GIANT pieces and proceeded to stuff his face with them, alternating his little hands in and eating frenzy.  (This is 20 min after he'd finished his lunch, by the way- - he wasn't hungry.  He just loves to eat.)

Being the newly-anxious-parents that we have become, we thought it wise to advise our son to finish chewing what he had in his mouth BEFORE shoving his other hand's mum-mum into it.  This didn't go over so well.  He COMPLETELY disagreed with us and vocalized it.  So we took BOTH of his beloved mum-mums out of his hands and made him wait until he was finished chewing his mum-mum filled mouth.  Again -- disagreement.  So we removed ALL the little mum mum bits from the highchair table and reassured him that WE were in control and we did not want him shoving ANY more mum mums into his mouth until he was FINISHED with his first mouthful.

As we looked at each other in contented agreement, the little bugger - -mouth STILL full to the brim with  mum-mum bits- - slowly gave us a devilish grin as he reached down into his high chair and produced a HUGE piece of mum-mum and, with a flourish, THREW it into his mouth before we could protest.   Apparently he had one hiding under his legs.

The end of the story goes like this - -Toby finished every little last bit of his broken mum-mums and we topped it off with his first real piece of banana.  He didn't choke on a thing and is now officially well on his way to resuming both his monster-ish-ways AND his real food eating abilities.  There's no stopping our little guy!

Benadryl - -more than meets the eye

People have been telling is it will be difficult to resume normal "parenting" in the face of what has happened. I was expecting to be more anxious with the next cold -- down the ROAD, but hadn't anticipated how quickly that anxiety would surface.

Last night after putting Toby down he coughed TWICE around 10pm. This is 24 hours after we'd stopped antibiotics. We didn't say anything about the cough to one another -- but he hasn't coughed in a few days and as we went to bed I could tell that Rob had noticed it. He kept our bedroom door open and didn't put the fan on. When I asked him why he said, "He's coughing again". That clinched it for me.

I lay there for hours anticipating the return of his pneumonia, going back to the doctor's, facing the ER again - - everything. All over again. Needless to say, I got myself a little worked up. And I couldn't sleep.

Finally, sometime after midnight, I decided I was being ridiculous. He hadn't coughed again and was sleeping soundly. So I got out of bed and went over to my trusty medicine cabinet and guess what I found? Aha....our good friend Benadryl. I've never taken benadryl to help me sleep but I had some that my mom gave me "just in case" for those first few nights in hospital with Toby. I looked at the package - -they were 25 mg tablets. The dose I'm used to giving in ER is 50mg so they looked a little wimpy. I then noted the expiry date - -April 1999. They had expired last CENTURY. Harmless. But hey, I am a firm believe in the placebo effect. So I decided to take one.

8 hours later.

I suppose I got back into bed after taking my fine 10 year aged low dose benadryl. I also suspect that I turned off the light and pulled the sheets over me. I don't remember. All I know is that I had a mighty good sleep. HOw Toby managed to stay awake DESPITE a dose of benadryl at 3am while in hospital is beyond me -- that is some GOOD STUFF.

I admit, I was a little groggy this morning. As I lay awake but dopey in bed, I happily listened to the sounds of of Toby laughing with Daddy as he ate his yoghurt. Which was shortly followed by screaming Toby who was DONE with breakfast and desperately wanting out of his high chair. Which was then followed by the CRASH of him having pulled down his stereo system from the shelf in his bedroom. I decided it was time to get out of bed. There were no more coughs, just the continual sounds of a healthy, happy Toby well on the way to recovery.

PS - -this is for Vivian - -Toby is doing very well, thanks. He is making lots of sounds and chatter and back to cruising around the furniture. Every day he reminds us of the little things he used to do before he got sick. Like pulling my glasses off my face in the morning, trying to feed himself but getting yoghurt in his hair, and dancing to Shania and Dance,Baby,dance. Its all coming back and reassures us that our old Toby is just around the corner. My favourite was the other day -- I was lying on the floor talking to my mom on the phone when Toby remembered how to give kisses. He came crawling over and slammed his face into mine and I got a huge one right on the mouth. It was wonderful....

The Lady of the Spa

I don't wax my legs, I don't go for regular massages or pedicures, I haven't had a manicure in years -- but the one girly thing that I do is get my eyebrows waxed.  Its one of those things that once you start doing you just can't stop.  I mean, its not like you can hide your unwaxed eyebrows under your pants all winter long- - they stare right back at you and yell "PLUCK ME OR WAX ME" everytime you look in the mirror.  Despite all we've been through these past few weeks, my eyebrows didn't stop growing, and as things started to return to normal, the evil eyebrow hairs started to yell at me in the mirror again.  So yesterday was the day.  Toby was having a good nap, Rob was catching up with every CSI episode that was taped on PVR while we were away, and I bit the bullet and drove into Collingwood to get my hairy eyes dealt with.

I don't go to a fancy salon or anything -- I go for convenience.  In fact, the reason I picked this particularly grungy salon is the there is NEVER anyone in there.  I can walk in at any time of day -- weekend, holiday or weekday and there is always the same nice girl sitting at the desk just waiting.   I always humour her by saying, "do you have time for an eyebrow wax sometime today?" to which she checks the book and then says, "Why yes -- I can take you right now!"

ONE time- - I think it was a Saturday in the summer - - there was another customer in the room getting her feet soaked. When I asked for a waxing she didn't even have to check the book, "No - -sorry. We're SWAMPED today."  That was the one and only time I was turned down.  Usually, its like my own walk in waxing centre.

So I went in yesterday and the same cheerful girl was there.  This time when she saw me though, her politeness went out the window.  She took one look at my eyebrows and GASPED.   "Oh my GOD!  LOOK at your EYEBROWS."  She ushered me into a room quickly and shut the door.  "How LONG has it BEEN!!?!?"  I couldn't remember exactly.  Sometime before Christmas.

She was NOT impressed.  She warned me that it was going to HURT.  She then applied a coat of wax on my horrifying-ly-hairy eyebrows and then paused,

"I'm going to have to put TWO COATS of wax on or its just going to STICK to your FACE"

So she put more wax on.

Then she paused again,

"Are you SURE you're ready for this?  Its REALLY going to HURT."

(WHat choice did I have, now, with TWO coats of wax on my horribly-horrifically-hairy "face"?)

So I braced myself.  And it hurt.  But this is all in the context of I-just-spent-the-last-two-weeks-sitting-vigil-over-my-son-in-the-icu-at-sick-kids so  it really wasn't all THAT bad.  I think she had been hoping for more of a reaction.

She then waxed between my eyes and told me I was REALLY LUCKY that I didn't grow hair BETWEEN my eyes or I would have had a UNIBROW and look like MEDUSA.

I thought medusa had snakes coming out of her head. But maybe tiny hairs is the equivalent when you're an aesthetician.

After much huffing and puffing on her part, she finally finished my eyebrows.  I'm surprised she didn't charge me extra for all that I had put her through.  And as I was leaving she yelled after me,

"I sure hope you've learned your lesson!"

I smiled on my way out.  Every stranger we met at Sick Kids - -even the parking attendants - -seemed to walk on eggshells around us and treated us with an excessively polite manor.  How nice it was to be yelled at.  It was a little reminder that life is going back to normal, again.  

Toby's Carepage Journal

Here is my blog from our time at sick kids hospital...

Welcome

Posted Jan 12, 2009 11:12am

Thank you for checking on Toby. We created this page to keep everyone up to date on his condition. Thank you so much to everyone for all of their thoughts, prayers and kind offers of helpful things. We are overwhelmed by love and support right now. Thank you for your kind messages. We don't want any visitors or phone calls right now. It is very hard to talk about things and we are trying to stay strong for our little boy.

I'll summarize things briefly (this is new for me!!) Toby got sick on Wednesday with a cold. It developed into a croupy cough and Thursday morning we took him in to Collingwood hospital where the good Dr Smith treated him and sent him to Orillia. He got excellent care but deteriorated and needed to be intubated. He was transferred to the hospital for sick children in Toronto. IT is a fabulous place and he's getting great care here in the ICU. We have a room for parents here. Although we never wanted to be one of the 3 sets of parents who were deserving to get a room here, its very handy.

He is currently on a ventilator and is paralyzed and sedated. He's on more morphine than Rob and I could handle combined. But he's comfortable. He has lots of tubes in him - one helping him breath, one into his artery to monitor his blood pressure, one in his bladder to drain it, one in his stomach to drain that and 2 IVs- one in his hand and one in his head. That being said, he looks very peaceful and comfortable. I left him to come down here and all his vitals were good and he was listening to his favourite, Shania Twain. My mom thinks his heart rate went down a bit when she put it on. Not totally convinced but we'll go with that. The nurses are enjoying it at least.

For those of you who are medical: He does have RSV (which stand for Respiratory Synctial Virus) and he did have croup. He has from that developed a secondary bacterial pneumonia. He's on Ceftriazone, Biaxin and they are starting vancomycin today. He also has bilateral pleural effusions. He had some fluid drained from his lungs yesterday and its reaccumulated and septated. They are going to put a few drains in today and do that under ultrasound guidance. They're also using TPA in his lungs to clear the firbrous septations. Its all very complicated and beyond my comfort level/clinical knowledge. People keep trying to show me his blood gases. I have NEVER been good at interpreting blood gases. His pH is good. We'll leave it at that. According to the good Dr Guscott "his vent settings are excellent". He is technically in Acute Respiratory Distress Syndrome for now but I am staying positive that their interventions will get him through this.

Thanks again for checking on him. Please leave a message if you'd like. I'll let you know when we're up for phone calls or visits. We appreciate so much all of the love and support from all of you. We are so lucky.

Much love, 

Lyss, Rob and our precious Toby

Monday - 5pm Small steps

Posted Jan 12, 2009 4:33pm

Toby just had a procedure to drain some fluid from his lungs. They thought they would get about 10 mL of fluid off and weren't sure if the effort to wheel him down the hall and do a procedure on him was worth it but it was. They ended up getting >100 mL off and they left the drain in. I look at the fluid in the collection thing and can't imagine how uncomfortable it would be to have that in my lungs. So I'm glad they did it. He's back in his room listening to Shania.

His fever has been down all day and they are no longer needing to pack him with ice. So I've been able to run my hands through is beautiful blonde hair this afternoon which has been wonderful. They had to shave part of his head for the 2nd IV and Rob thinks we should give him a buzz cut when this is all over so he doesn't look lop sided. With both my mother and I in the room at the time, he did NOT win THAT debate.

They're hoping to start weaning the paralytic agent tonight. The doctors/nurses keep referring to it as the "muscle relaxant". It's rocuronium. That's some pretty potent "muscle relaxing" that’s going on. My mom thinks it sounds like a kind of ice cream. But it’s the only thing that's keeping him from extubating himself right now. Well, that and a continuous morphine infusion and regular doses of ativan... They cut back slightly on it and he started bouncing his feet to the Shania beats which everyone thought was pretty sweet. I think they're underestimating the feistiness of my little guy and are in for a rude awakening as they try to skip the next dose. I'll keep you posted :)

I'd better get back upstairs. Thank you all SO much for the messages. It is incredible how much your love and support helps. I know it’s not easy on the other end as well just helplessly waiting for updates and feeling helpless. But believe me, you are helping just by what you are doing right now. Please pass the website along to anyone else that wants to be in the loop.

Much love, 
 Lyss, Rob and Toby

PS Do you think it will do him any psychological damage for him to keep hearing "Man I feel like woman" over and over again in his head? I REALLY hope those aren't his first words...

One more thing...

Posted Jan 13, 2009 4:58am

I just closed my Internet connection and noticed a "sign"....

For months my old Dell laptop has been doing this crazy thing with my desktop. It suddenly loses the picture that is the wallpaper and disables the active desktop. Or something. And sometimes I can go to the control panel and reload it and sometimes I can't. For some reason this week (starting on Wednesday) the picture of Toby I had as my wallpaper started disappearing. Just the bottom few millimeters and then more and more. It’s the picture of him with his head on the ball. I couldn't help but feeling eerie about the fact that Sunday morning just after we'd arrived here there was only the very top of his head left along with a black screen.... I tried frantically to reload the picture (as I had been doing since Wednesday) but still the computer wouldn't let me.

This morning, as always, I turned my computer on to see just the tip of his blonde hair along with a black screen but this time it popped up with the control panel and I tried a few things as I was updating all of you...and closing my browser I saw for the first time since Wednesday the picture was back and his beautiful blue eyes were smiling right back at me.

It’s going to be a good day.

Good Coughs

Posted Jan 13, 2009 5:20am

I just realized that my initial FIRST update got lost.... the one about the sign should have come afterwards but I guess I lost my connection and it didn't go through...I'll try to rewrite it again...

Thank you all for your kind words. I woke up at 3 am this morning and for the first time in days didn't feel like my stomach and heart fell into my boots as I realized where I was. I really feel the positive energy you are all sending us. Although I DO feel slightly guilty that we may have started our own Shania Cult as a result :) (I won't mention that he also likes his "Dance, Baby Dance" CD...)

Toby had a good night. His fever came back but that's to be expected at night. They are giving him Tylenol and advil but had to put the ice packs back on. They don't use ice blankets but actual bags of ice. Its slightly barbaric but then again, so is the amount of Shania we are forcing the nurses to listen to on repeat...

They managed to keep him off his "muscle relaxants" with the help of our good friends, Morphine and Ativan. He was sleeping peacefully when I went in at 5am.

He continues to cough which is a good thing. But it’s hard to watch. 

He coughs and arches his back and then moves junk into his ventilation tube and his Oxygen level drops to the 80% range so they have to suction him. This is the part I can't watch. (Hence the reason I'm emailing at this ridiculous hour...) Imagine if you'd just finished having a coughing fit and then someone told you to hold your breath so they could ram a tube down your throat and suction your lungs out. When they have done it long enough they bag him but usually the suctioning mobilizes more secretions and they have to repeat the process again. And again. And all you can do is sit there and listen and watch is Oxygen levels beep at you. Rob and my mom are much better than I am at watching the whole thing. Toby is getting better with it. He's coughing less and its not taking as long to clear things. So hopefully mommy gets better with it today, too.

The only other news is that he blew one of his IV's last night. He's very puffy and edematous from leaky blood vessels throughout his body because of the inflammation. So getting another IV will be tricky and they are likely going to have to give him a central line today. That’s basically an IV in a big vein in his leg or his neck. I'm just glad they're not going to ask me to do it...

He's still not having great urine output but they're giving him lasix and as things clear up he will hopefully be able to diurese all of the extra fluid in his body. He is still on the vancomycin and will be until the culture results come back later on today. Then they will put him on a more pared down regimen of antibiotics. It seems so silly to me that a few weeks ago we were so careful to wait 3 days before introducing new foods and now he's had every medication in the hospital pumped into his system over the course of 3 days. Rob says he's going to start him on peanut butter when he gets home....

I'd better get back up to him since I've been down here WAAY longer than anticipated. Thank you all again SO much for your messages. Some of them make me laugh and some make me cry. Basically I'm sitting here fixated on my computer as I alternate between the two. I must look like a mad woman. I believe they call that rapid cycling mania? Doesn't matter. I find everyone's positive energy, love and support is making this whole process seem bearable.

Sorry for the mixed up updates -- the one about "the sign" should come next. I will update again when I get the chance.

Love to all,

Lyss, Rob and our little man Toby

PS To the medical folks-- his CRP yesterday was 487.2. The normal range in kids is up to 8. I never thought they'd be checking my boy's CRP until he was 50 and assessing his cardiac risk factors...

Coffee machines and Chloral Hydrate

Posted Jan 13, 2009 12:18pm

I don't have much to add but it sounds like people enjoy hearing more news so I'll just send a quick one now.

They've started him on regular doses of lasix (to make him urinate) because his urine output is pretty poor. It was only 1cc an hour which totally freaked me out for a while but then I realized we're only looking for 1cc/kg/hr and he only weighs 9 kg so it’s not that bad. I have to stop applying adult medicine to him. His creatinine is good which means his kidneys are still working; he just doesn't have anything in his blood to filter, as his blood vessels are leaky from all of the inflammation. Once he starts improving they'll he'll hopefully start to diurese on his own.

They're giving him Chloral hydrate to sedate him and it’s working better than the advil. I don't know too much about this drug but I know it’s a good one. Lets hope I never see his pupils this constricted again. Who knew I'd have a 10 month old strung out on such potent drugs!!! Never again, Toby! As Meredith pointed out, now when he asks to borrow the car at 16 I can say no because he's used up all my worry tokens. (That came from Meredith Lortie -- not Meredith Holloway.... she’s not advanced THAT much further than Toby over the past week!!!)

They've also weaned his PEEP pressure from 10 to 9 and his O2 from 50% to 45%. Small steps but all going in the right direction.

I'll conclude with a funny story- - my dad came down last night to have dinner with us here at the hospital. He didn't come see Toby because I didn't want to upset him but he wanted to see us. WE were sitting together waiting for my mom and Rob to come down and a little kid walked through with an IV pole and all the fixings. (Sadly, this is a regular sight here and it has become the "norm" to see such sick kids walking around with IV poles...) MY dad looked at the kid and then at me and then at the kid. He thought for a bit and then leaned in and asked, "Lyssie- - does that kid have a COFFEE machine with them?"

Flexibility of a 10 month old....

Posted Jan 13, 2009 8:19pm

How wonderful it is to see Toby throw his feet in the air again. If only he didn't try to put them in his mouth and almost knock out his ventilator tubing in the process it would be pure rejoicing. We are also enjoying seeing his "grimace" back again. In fact, its so nice just to see him move that it ALMOST makes up for the fact that in the process of doing so he throws his vitals out of whack, sets off all alarms on his ventilator and sends the nurses running for ativan/morphine/chloral. It also, unfortunately, sends mommy into a tizzy. Let me tell you, if I were hooked up to a machine that measured all of MY vitals it would be going crazy as well.

So although its great that he's able to move, we're not wanting that yet. HE still has at least 2 more days before they'll think of extubating him so we're walking the fine line of keeping him sedated enough NOT to wow up with his circus moves, but awake enough to take some breaths and cough up the phlegm.

Tonight, unfortunately, Rob and I aggitated him by our voices and our touch. Touching his hair, singing him a song, reading him a book or just chatting with one another set Toby off into aggitation. What breaks my heart is that he obviously hears us and must be thinking "Why don't you pick me up and make this all better?" and the more we try to soothe the more aggitated he got. SO finally I just decided to come down here and update everyone and we'll just sit by his side and try to hold back our urge to touch or coddle him too much.

Seeing as this may be going on for the next few days.... could someone please tell me how to spell "aggitate"? Is it one "g" or two? Thanks...

I'm so happy to see so many people have joined this site and spread the word. Although I have to admit I'm a little embarrassed that so many of my colleagues will discover my hidden (or maybe not quite so well hidden...) inadequacies with blood gases. I told the RT, Nicole, that today and she gave me a refresher course, so fear not! I will leave this hospital well versed in vent settings and blood gases!!! There is hope for me yet :)

In any case, it has been a good day. The attending showed me his chest x-rays today and there is definitely some improvement. Walking back to the room he caught me glancing at the huge "Bereavement for Parents" display and touched my arm and said, "Its a one system problem -- his prognosis is excellent". That's all I needed to hear.

Good night to everyone. I wish I could call more of you to talk but please know how much we feel your love and support every day.

Love, 

Lyss, Rob and Toby of the flexible feet

The PEEP is down to 7!!!

Posted Jan 14, 2009 7:52am

(To be sung to the tune of “The Farmer in the Dell”)

The PEEP is down to 7
The PEEP is down to 7
Hei-ho the merry-oh the PEEP is down to 

I sing Toby the farmer in the Dell all of the time at home but I never remember the words - -this morning I’ve made up my own words. I was so excited when I came in and saw this that I started humming it right away…. I am obviously not singing it with words in front of the nurses - -just standing above him humming it to him. They just came around and did rounds. About 30 serious doctors/health care professionals standing around reading out his stats and making decisions about him with very serious faces. What I WANTED to do was rip off my gown and mask and jump into the centre of the circle and dance a jig singing my new song “THE PEEP IS DOWN TO 7…” while twirling the gown above my head...but I think that would either get me kicked out or formed. Good thing I was wearing a mask so they couldn’t see me smiling at the thought…

PEEP stands for Positive End Expiratory Pressure - -its one of the things we need to wean to get him off the vent. Basically it means he’s doing better. IN adults we wean down to about 1 but in kids I think around 5 is acceptable.

His blood work is looking good- - Hb is up a bit to 98 so he won’t need to be transfused. WBC count is 15 which are down from 17. BUN and Cr still in the normal range. pH is normal. CRP was in the 300s yesterday.

He is on full feeds now by NG tube. They’re giving him Enfamil formula (which he HATES) but it’s going down well. They haven’t mentioned the central line today because he’s tolerating the infusions from his head IV. He hasn’t been draining much from his chest tube so they may reposition this today – he still has an infusion. He isn’t urinating all that well over night despite q8hr lasix so they’re starting a lasix infusion. The fellow had to pull out his handbook to see how to order that. So that’s definitely not too normal. But hey, “The PEEP is down to 7” so we’ll focus on that.

People keep mentioning how strong we are in the guest book. Thank you for that. But to be honest, when you are forced to face the thought of losing your child, the strength that I imagined having to muster up was overwhelming. And the bargaining I did enlightened me about the bare necessities of life -- Toby. If we walk away from this with some semblance of our Toby bear then the rest of it is just a bonus. And turning that corner yesterday, I felt in my heart for the first time that he really IS going to pull through this, and realizing all the other things we still have on TOP of that – life has never seemed better. When I picture the return of bath time, and him dancing to Rob’s guitar playing, and him and Meredith trying to poke each other’s eyes out, and the sound of him saying “Mnum num num” as he eats makes me almost euphoric. Life will never be the same again. And I have never felt so lucky or blessed.

Love, 

Lyss Rob and Toby the Trouper

PS Thanks for all of your spelling help…and to think -- I haven’t even had to use the word agitated yet today...

CPAP!!!!

Posted Jan 14, 2009 5:13pm

Another day full of positive developments….he is now on CPAP which means the ventilator is not initiating breaths but just providing him with some extra pressure when he takes breaths on his own. If this keeps up for another 24 hours or so they’ll be able to extubate! I can’t believe my smiling, tubeless Toby is potentially just a 24 hour distance away….

Rounds were exceptionally short this afternoon so I don’t have too much to add. In fact, I can sympathize with them all wanting to get out of here. Rob and I find our only break from the hospital is when we have to move the car at 11pm from the lot to the overnight street parking. (Did I mention that we have a room here? There are 3 rooms for parents of kids in the CCU and they give it to you based on how critical your kid is—you have to check in every day to see if you’re still eligible. Although it will make life slightly more complicated when we get kicked out, I am eagerly awaiting the day they decline our request!!!) Anyway -- a few nights ago when we went out to the car I said to Rob, “Hey, wouldn’t it be fun to drive around the block?” and Rob-I-only-use-the-car-when-absolutely-necessary-because-I’m-environmentally-friendly-to-a-fault-Henry actually COMPLIED!!! In fact, we had so much fun on the first loop around that we drove around the block TWICE. SO last night when we went outside there was a PERFECT parking spot right in front of the hospital and I said, “Gee…I guess we can’t have our late night drive around the block or we won’t get that perfect spot” to which Rob-I-only-use-the-car-when-absolutely-necessary-because-I’m-environmentally-friendly-to-a-fault-Henry said, “Don’t be silly- - I’m sure we can find a different spot if that one’s not still there when we get back”. And so we seem to have started a little tradition of extending our world by a 2 block radius just before bed. So you see – we DO leave the hospital, sometimes!

We're off to check on our room status and have some dinner. Thanks again for thoughts, prayers and messages. They make our day.

XO 
Lyss, Rob and Toby the CPAP-er

Teddy Bears

Posted Jan 15, 2009 7:10am

Life continues to be an emotional rollercoaster. I went in this morning to see him and the nurse told me he had a great night. She then proceeded to say, “But your son sure scared me last night!” (Is that line not in the manual of pediatric ICU nursing as one of the top 10 things NOT to say to parents in the morning?) So I very calmly replied, “Oh?” And then she explained that she had walked over at one point and his eyes were wide open, staring straight ahead. And that had scared her.

As my heart rate slowly returned to normal I noticed that he had a big stuffed teddy bear ON his head. And not just a little stuffed bear, but a BIG one. The feet were resting on Toby's shoulders. Random. So I said, “It looks like he’s got a Teddy Bear on his head” to which she said, “Yeah, he really liked it when I rubbed his head so I put a the teddy bear on it instead”.

Now, I’m sure that line is NOT in the manual - -but perhaps another thing not to say? The guilt I feel about sleeping through his eye opening and his desire to have his head rubbed is immense this morning. I know, I know - - I need to sleep, too, but after all my little guy has been through I just wish I could have given him the head rub he so deserved…

His blood work is all looking good. He continues to need lasix and his abdomen is very distended but they think that’s constipation and are giving him some lactulose. I’m sure it will make him seem a bit more like Toby when I get to start changing those diapers again. He remains on CPAP but I didn't have time to check the vent settings before I was kicked out for nursing handover. I'll keep you posted on the respiratory status as the day goes on....but for now ’m off to remove the Teddy Bear and do some mothering…

Love to all of you,

Lyss, Rob and Toby Bear

Code Brown

Posted Jan 15, 2009 10:22am

Wow - -that lactulose is GOOD STUFF! Toby had the LARGEST poop I've ever witnessed. Not to get into gory details but I was POURING out of his diaper -- all over his sheets and tubing. Yowzers. "Man, I feel like a mother!!" The nurses all thought I was nuts but I was HAPPY to finally be back to changing diapers! Rob, on the other hand....

So today MAY be extubation day. They have got him down to pressures of 8 on 5 and an FiO2 of 35%...I'm still hoping its tomorrow as he still has a pleural effusion (water on his lungs) and they just took the chest tube out this morning. Although I'm happy about all this progress (to say the least!!) things seem to be happening a little too quickly for me... I'd rather be absolutely sure he's able to cope with things before they throw us back into the world of independent breathing...

He had some more eye opening this morning but just gives us all a look of disgust and then closes them again. It is heartbreaking that the sparkling eyed Toby isn't the one we're seeing right now - -I just want to say to him, "Hey- -don't look at me like that! I didn't do this to you!!!" But I know it’s just the morphine and the fact that he's still just so sick. And I'm sure that sparkle is just around the corner...He DID give my mother a much deserved eyebrow raise to her Shania dancing :)

Before I log off I just want to clarify from my earlier post- -we absolutely ADORE his nurses here....I hope my last post doesn't make people think that we don't appreciate the care they have given him. His nurse last night, like all the others, was fantastic. And I'm sure my own patients could write a manual about the inappropriate things I've said at times, too. It’s a difficult job that they do and they do it well.

Happy Shania dancing,

Love, Lyss Rob and Toby Bear

Extubation Update

Posted Jan 15, 2009 3:39pm

Toby will not be extubated today -- there is still inflammation around the tube and he had some desaturations today. Nothing major -- everything is still moving in the right direction, just slower and a bit more cautiously. He is getting some dexamethasone (steroids) so that the inflammation around the tube goes down and they will hopefully try to extubate tomorrow.

I reviewed the X-ray films with Dr Hutchison today and it looks like he still has a pleural effusion and there is a definite pneumonia on the right side of his lungs. They'll start weaning some of the big gun antibiotics soon but only one at a time until he's on a reasonable antibiotic for pneumonia and he'll likely finish the course with that one.

All of these things make me anxious. I have felt very secure knowing that there was a tube taking over his airway and a machine taking over his breathing while the rest of his body could recuperate. This time tomorrow we won't have that security. I know we have to eventually just bite the bullet and do it and I'm sure everyone's prayers and positive thoughts will help! (I never thought I'd write that I felt good about my son being on a ventilator!!!)

I'll keep it short and sweet for now
.  Thanks again for all of the kind words - -it helps so much

Love, 

Lyss, Rob and Toby the Tubed (for now...)

Tube-less Toby!

Posted Jan 16, 2009 8:58am

The tube is OUT!!! We were told last night at 11pm that they would be taking it out at 6am. My medical brain went out the window as mommy brain took over and I imagined all of what we’d been wishing for this past week coming true at 6am sharp. It was only a matter of hours. I guess I pictured the doctor waiting anxiously outside his door until the big hand hit the six and then running in and yanking the thing out and a soap opera version of Toby fluttering his eyes and then sitting up and smiling at us before reaching out to hug and kiss us. I had Rob set his watch as we went to bed and wondered how we would ever fall asleep knowing that our Toby bear was just around the corner….Needless to say, that’s not what happened.

To start with, we both slept through the alarm. Which is LUDICROUS since this was potentially going to be the TSN turning point and when we woke up at 7:15 and realized we’d just MISSED it – its like forgetting to pick him up at the airport. Or sleeping through Christmas day. And THEN we realized with HORROR that we weren’t even allowed in during shift change which went from 7:15 until 8pm. We couldn’t have planned our sleep in at a worse time – we then had 45 minutes in which to agonize over our unfortunate sleep in.

It was also apparently shower day for the entire east Indian family that live in the CCU lounge. There are about 10 of them who are here day and night. They are lovely people who take turns on the prayer mat and in with the child. I don’t think I’ve ever seen one of them leave the hospital yet. But today was the day they ALL decided to shower. All I needed to do was brush my teeth but there was a line up down the hall. So obviously a shower was out of the question.

Anyway - -FINALLY 8am arrived and our unshowered selves eagerly ran in to greet our now tubeless son.

And our hearts broke. The tube is out. He is doing well. The morphine is weaned. And he’s lying on his bed in an oxygen box, staring to the side with tears rolling down his cheeks. His voice is too hoarse to cry but we can tell by his eyes and his down turned mouth that he is. What a horrible thing to wake up to. We can’t pick him up. We can’t even touch him because of the glass box over his head. Our words seem to be doing nothing. He is just lying here crying silently to himself. I don’t want to know what’s going through his head. I don’t even want to guess. I just want this to be over.

We are once again faced with the agony of knowing how hard this is on his little body and the helplessness of not being able to explain it to him with words or kisses. I know we continue to take steps forward. This time tomorrow we may have our soap opera image of him. But right now all we can do is hold his little hands and cry with him as we keep praying that this will all end soon.

I don't want to end on a negative note so I'll end with my "humorous" moment of the morning. I went in to the washroom down the hall (to brush my teeth) and someone had obviously left some papers by the sink. I took a glance at them but it was an article that makes your brain hurt just looking at it. The title itself was about 4 lines long and contained the words "apoptosis", "DNA synthesis" and some sort of gene or DNA piece with a name like "tP64EPOg67b" or something complicated like that. I averted my eyes and had a moment of thankfulness that my research days are over...About 15 minutes later I walked past the lounge and saw the Grandfather of the East Indian family sitting in a chair by the bathroom. (He had obviously made the wise decision to skip shower day and stick to teeth brushing only...) He was holding the article with two hands and perusing it with such a look of determination in his face. Life at the CCU is SOOO boring that we cling to ANYTHING new to read. And this poor old grandpa was sitting here reading this ridiculous article on DNA synthesis...who knows? Maybe he discovered a gold mine and some poor research student will lose his job forever for letting the secret of "tP64EPOg67b" out....either way, it made me chuckle...

Happy Friday, everyone and thank you all so much for continuing to check on us. Sending updates is very therapeutic for me as it faces me to see things with some sore of positive/humorous spin on things.

Lots of love,

Lyss, Rob and Toby the Tubeless

Not such a bad day after all....

Posted Jan 16, 2009 2:24pm

Things continue to steadily improve. Toby is such a strong fighter- - he’s managed to wean himself out of the glass box and he’s already doing fine just with some blow by oxygen by his pillow. Too bad I wasn’t in a euphoric moment while he was in the box or I TOTALLY would have had you all singing the song, “Its my kid in a box”. If you haven’t heard of it, I don’t think I’m allowed to actually write the REAL title on a kids Internet site. Trust me, though, a) its funny and b) you’ll be glad not to be humming it all day long…

Anyway – back to the good news. Toby is out of the box and lying in his crib. He’s still crying to himself whenever he thinks too hard about things. The foley catheter is out and they PROMISE me that they will still be checking his urine output by measuring his diaper weight. So far today he’s had zero based on my frantic touching of the inside of his diaper every hour or so. I miss the foley. I was much less crazy when he had a foley.

His arterial line, the IV in his head and his NG tube are still in place but if things continue to progress in this manor he will be without some of them within the next 24 hours.

I DID finally get to hold him this afternoon. It was a complicated process involving 3 of us navigating our way through tubes and machines but finally he was in my arms. I would have burst into tears if he wasn’t already doing so from the annoyance of the whole situation. But after he calmed down I was able to have a long awaited snuggle, smell of his hair, stroke of his toes and kiss of his eyes. It is a moment I’ll never forget. Ever.

After a little bit we were able to feed him. Rob and I had to support his little head - -he has no muscles after over a week of complete bed rest and “muscle relaxants” so we had to hold it up for him. He was ravenous. Our little Toby is still the monster he used to be when it comes to food. And GUESS WHAT?!?!? IT turns out he CAN take a bottle!!! That’s right, he DUPED us. All those months this summer while I was FRANTICALLY trying to get him to take it so I could go back to work and he refused and refused- - today, high on morphine and deprived of food for 1weeks our little guy FORGOT that he pretends not to know how to suck on a bottle. AHA! Turns out he can.

He also, apparently, has some new teeth. We saw 1 new one on the bottom and 1 new one on the top. If our addition is correct that would mean he now has THREE teeth. But his nurse from Monday came to pay us a visit and swears she saw 5 teeth. To quote her, “I’m pretty sure there were 5 in there- - I remember singing him the ‘I have 5 teeth’ song”. Now, I’m not sure how that song goes, but if I learn it I promise to let you all know so you can sing along to “I have 5 teeth” instead of “its my kid in a box”.

Things are certainly looking up. Grandpa and Grandma Henry are in with him today and my mom is on her way. A little love from grandparents goes a long way….

We’re hoping to be on the ward tomorrow and then they say another week or two before we’re home. In the meantime, happy weekending to everyone.

Love,

Lyss, Rob and our brave little Toby

A Good night's sleep for everyone...

Posted Jan 16, 2009 9:55pm

I'm writing this episode from my parents’ house which is - -wait for it-- MORE than 2 blocks from the hospital. Wowzers. Things really ARE looking up. After an exhausting day with parents and grandparents and various doctors and nurses (and LOTS of Shania), Toby was absolutely wiped out. So we put him to sleep for the night and ventured up to my parents' house for dinner. Grandma and Grandpa Henry are checking in on him on their way back downtown where they're staying and we'll be down first thing tomorrow morning. And it’s been 2 hours and so far I've only called the hospital once. He's doing well. He's asleep and has a 1 on 1 nurse who is going to get paid an extraordinary amount of money to watch him sleep tonight. Hopefully. Maybe we should start asking our babysitter to check his vitals and urine output every hour. Haha.

So I'm having a good night's sleep before the task of taking care of a rambunctious 10 month old on respiratory isolation in a hospital room sets in tomorrow. The plan is to send him to the general pediatrics ward tomorrow. So Rob and I did some laundry tonight and sorted Toby's "things" to bring to him . How wonderful it is to fold his sleepers, pick out his favourite toys and pack a bag of food that we know he will eat. The last time I saw his things I was packing them into a car to send them to my parents house- -it was too painful to look at them without knowing for sure he'd need them again...

Today the son of the East Indian family died. They called a Code blue on him this afternoon and everyone came running. It’s an odd culture here in the CCU. In any other hospital a "code blue" is broadcast over the speaker system and sends a chill up the spine of everyone in the hospital. When a code occurs in the CCU the rest of the hospital is not informed. In fact, according to our nurse, often the parents don't even realize it until the entire staff of nurses, doctors and respiratory technicians come racing through the door with their pagers echoing behind them. No wonder its not broadcast overhead. Not a parent in the unit can witness that without a jolt of reality about their own situation surging through their brains.

I like to put a humorous spin on thing, but there is nothing more to be said about this. I watched a lovely family lose their child today and there's nothing remotely positive to be said about it. It was awful.

I'm off to bed in a place that is familiar to me, while once again my child sleeps under someone else's watch in a place I hope never to see again.

I look forward to updating from the 7th floor tomorrow where the 3 of us will be tucking into bed together.

With love to all of you-- especially Em - -I hope you had a fantastic night on your 30th birthday. Was thinking of you all night and wish I could have been there. 

I LOVE surprise parties!!!

XO
 Lyss, Rob and Toby the Terrific

Computers and Chloral Hydrate

Posted Jan 17, 2009 1:48pm

Sorry for the long delay in updates...my computer seems to have died on me. Which is a nuisance since I seem to have become somewhat of an obsessive blogger this week....but in keeping with our new enlightened view of life – this is really not a big deal. Computers are replaceable. If this had happened last week it would have been a big deal - -perhaps even an argument about when and where to get a new computer, a day of travel to Barrie to buy one, the agony of disrupting Toby’s nap in order to do so and juggling around of money to accommodate the purchase. Today when I realized it was busted I said, “Hey, Rob, the laptop’s broken” to which Rob looked up and said, “Oh.” to which I said, “Oh, well” and he said, “Better get a new one...” My how life has changed!!!

Toby is doing well. He’s due to go up to the ward sometime today. Rob and I had a good rest last night so we’re all set for the thrills of sleepless night, diaper changes and parenting without the help of ICU nurses.

 

He’s very tired today because he was up every hour last night every time they check his vitals. He’s so upset every time someone looks at him that he wasn’t able to go to sleep for his nap. Not to mention the fact that his throat is probably ridiculously sore and he still has a feeding tube down his nose, an arterial line in his arm and an IV in his head. I wouldn’t be able to sleep, either.....This morning I was out of the room for a little bit and when I came back there were 4 people in yellow hospital gowns with face masks on hovering over him as he whimpered and cried. The nurse looked up as I came in and said, “He’s not sleeping” (duh) “so we’re going t have to give him something to get him to sleep. We’re going to give him some Chloral Hydrate” (an anesthetic agent) to which I said, “WHAT!?!?” I know he’s tired and all, but I don’t usually like to DRUG my kid to sleep. ESPECIALLY when he’s precariously breathing on his own right now for the first time in a week.

Much to the nurse’s dismay, I did not agree to the “chloral hydrate” sleep solution. Instead, I suggested that maybe I try to pick him up and rock him. (SHOCKING, I know) And perhaps the multitude of yellow gowned and masked individuals take a few steps away from him for a bit. The nurse was not impressed. (She was just the covering nurse, not his real nurse – she’s excellent) It took a little bit of finagling with tubes and wires but eventually my poor crying little boy was in my arms. This time he immediately buried his head into the crook of my arms and hid his face. And slowly as I rocked him to sleep, the “yellow people” started to dissipate. And as I sang him his usual lullaby he settled down. The stridor stopped, his heart rate came down and his breathing slowed.

The ICU nurses are excellent. The team here has saved his life. But its great to know that mommy still knows best. And sometimes, although it may be TEMPTING to use good old chloral hydrate, all he needs is a little love and snuggles from his parents to erase all the bad in his life right now and get him to sleep.

Feeling good about being a mommy again,

Lots of love to all,

Lyss, Rob and Toby-the-irreplaceable

New Home on 7B

Posted Jan 17, 2009 6:30pm

We're finally out of the CCU in our new home on 7B! We have our own room complete with bathroom, TV and seat-like-bed-for-one which will be our nest for the next week or so. Toby is very upset and emotional today. Who would blame him? He can't look at anyone or be moved or touched without completely breaking down and crying. We think a lot of it is morphine withdrawal, but some of it is pain and hopefully a small amount of it is his newfound distrust of anyone who goes near him. We're hoping that after a few days of only good things he'll go back to trusting that people are not going to hurt him. We have a long road ahead of us.

I actually miss the other parents in the CCU and find myself wondering how they're doing. The entire time we were there we didn't exchange a single word with any of the other parents. (Not even in the morning while we waited in line for the shower...) Instead our communication consisted of consoling smiles, or polite averting of the eyes when people were breaking down. I'm happy to be out of there but hope to see some of the other families joining us soon on the 7th floor.

I'm off to try out the new "bed" and dream of happy Toby and functioning computers.

Lots of love to all,

Lyss, Rob and Toby of the 7th Floor

Life on 7B

Posted Jan 18, 2009 9:11am

Toby had a surprisingly good sleep after an awful evening. We couldn’t get him to stop crying for hours - -and the more he cried, the more stridorous he got. There were so many different factors we couldn’t figure out exactly why he was so unhappy but we all knew the best things for him was a good night’s sleep. If I ever decide to try drugs please, someone, remind me of how TERRIBLE the withdrawal from morphine is. He seems to be inconstant discomfort and suffering from extreme emotional liability. He was extremely sensitive to touch, sound and sight so the overhead announcements and beeping in his room made bedtime particularly challenging. It took us 5 hours to get him to sleep but finally we did and an hour later his nurse came in to say that he wanted to feed him and check his vitals at 1:30am. I know its protocol but the thought of waking him up just to check his blood pressure seemed ludicrous to me. 

Anyway - - the long and short of it is that he did manage to sleep last night. HE slept through the 1:30am vitals and the doctor allowed us to skip his overnight feed. I slept on the plastic couch type thing and poor Rob had the floor. We heard him cough every 30 min or so and his alarms went off about 4 times overnight because his heart rate was less than 100. (This time last week I remember rejoicing that his heart rate was finally under 200….) Needless to say, neither of us had a great sleep - -but a number of times overnight I smiled to myself about how great it felt to be together again, just the 3 of us.

This morning he has been less emotional but he’s very weak, He can’t really hold his body up but is able to hold his head up. We have read him his Bear book about 30 times so far and he has just started to touch his favourite pictures. But he can only use his left hand so far. I tried to get him to sit by himself but he’s too weak to do that, yet. It’s hard to watch him have so little control of his body. Only a week and a half ago he took his first few steps and discovered that he could walk around the house with only one hand on the wall and the other hand holding something. He and Rob played a game where Toby would get something from his room and walk it over to Rob in the kitchen (taking the long way around, of course...) Its so sad to know that he’ll have to start from scratch in a way but hopefully his milestones will come quickly and he’ll be back to cruising around the house in no time. We are keeping our fingers crossed.

I posted some pictures last night - -now that he’s doing better I am able to look at the pictures and find the positives in them. I have some of while he is intubated but I didn’t post those because he looks so sick and awful and I didn’t want to upset anyone. So just the ones that document the improvements.

Wishing all of you a happy Sunday. Thank you all so so so much for emails, messages and everything you have done to make us feel special and thought of. It has helped and continues to help as we face the new challenges of "recovery".

Love,

Lyss, Rob and the Tobinator

PS For those of you who have seen Wall-E - Toby right now reminds me of the scene at the end when Wall-E is there but not there. Its heartbreaking, but I'm hoping for a happy ending. For those of you who haven't seen Wall-E I’m sure that doesn't tell you anything because you probably don't even know what Wall-E is, yet. See the movie. Its fantastic.

Tubes

Posted Jan 18, 2009 9:21am

This is for Lisa- - he's still got an NG tube but he knocked out his head IV (while I was out of the room- -thank goodness!!!) and they took his arterial line out last night. When he came up tot he unit they detached his 3 chest leads but have left the "Magical toe" (O2 sat probe) on his foot.

That O2 saturation thing- - although, granted, it tells us whether or not he's breathing -- is a pain in the neck. It is ALWAYS falling off or not picking up an accurate signal and keeps beeping to us that his sats are 64%. Which, after what we've been through, sends us into an irrational panic every time. This morning he has a FANTASTIC nurse who examined him and decided that he could probably take it off his toe while he's awake and we're watching him, but if we had any concerns about his breathing we could put it back on. So now we've only really got the NG tube to contend with and we don't want to lose that yet as he is still not eating on his own.

One tube to go!!!!

XO Lyss :)

Weddings and chest hairs

Posted Jan 18, 2009 4:11pm

Toby is showing gradual improvements. Having both Grandmas and Grandpas around has done him some good. He is showing some interest in a few things and reaching for people which makes us all feel loved and one step closer to reuniting with the old Toby.

He was able to sit up for a short period of time earlier and he has enjoyed watching the cars go by out the window. Much more excitement here than at boring old Brewster Lake...

I have to digress for a moment to let you all in on a secret I've discovered. HSC is THE PLACE in Toronto to plan a wedding. Or, at least, to meet with your wedding planner. During our one week stay here I have, on three separate occasions, overheard a meeting between a bride-to-be and her wedding planner. I have nothing against weddings - -in fact they are the most wonderful, beautiful things we do in our society. But when your son is critically ill, the conversations I was forced to listen to while waiting to be allowed back in to see him seemed somewhat....from a different planet? Here are some of my favourite quotations,

"Well, like, I really wanted to hire you because, like the WORST thing I could imagine would be if like I really HATED the music and so I could come up to you and be like 'Oh my GOD this music SUCKS' and you could like go and tell the DJ to change it."

(priorities....)

Here's another favourite...

"If you REALLY want a classy wedding its ALL about the flowers. HUGE flowers are SO out. You don't want ANYTHING huge. I HATE huge flowers at wedding. You should make sure they are small and classy. That’s how you have a classy wedding."

...meanwhile back at the first table...

"And the OTHER thing I've been worried about is whether or not my favourite songs will be played. I've made a spreadsheet of like all the different music types and categorized it in the order I'd like the different categories played. And I'd really like the DJ to like play my 2 favourite songs in each category before taking requests. So, like, if my DAD for example wants some lame song then like that's totally fine as long as I've had MY two favourite songs played in that category first."

....and moving on from the flowers

"I don't know WHY we have to have dancing. I mean, its basically going to be two of my friends dancing and maybe a really OLD couple and some young kid running around in the background. I don't care what people think. It’s MY wedding and I don't want there to be any dancing."

I really wished these brides-to-be had been here on the same day so I could have introduced them all to one another. I'd also have enjoyed overhearing bride #1 and bride #3 discuss the pros and cons of dancing at the weddings.

I hope that doesn't sound mean -- please keep in mind this is all coming from someone who had a 2 year engagement and thought her own wedding day would be the most important day in her life. It was. Until now- -thank goodness we don't have crystal balls. I would have hated to have had 2 years of forewarning to prepare for this last week of my life. Sometimes it’s a nice thing not to know what's waiting around the corner. I wish them all wonderful happy wedding days- - but more importantly, healthy children down the road.

It has taken me a while to type this update because I was interrupted by the sound of Rob laughing which was shortly followed by the sound of Rob saying, "Ouch! Stop it!" So I got up to see what was happening on the other side of the cot. Toby is in Rob's arms, trying to fall asleep...and as he was doing so he was running his hands over Rob's shirt and discovered some chest hairs poking out and he started pulling on them. Apparently, having tiny fingers playing with the ends of your chest hairs is extremely ticklish. (NOT speaking from experience...) And apparently having tiny fingers the PULL on your chest hairs somewhat painful....and apparently seeing your son regaining some sense of mischievousness while hearing your husband laugh for the first time in a week is excruciatingly....wonderful.

Update delay...

Posted Jan 19, 2009 10:14am

I have been told by a few people that when there are no updates for over 12 hours people get anxious so I thought I'd just let everyone know that an update WILL arrive later on today.

Told from a sleep deprived and frustrated mother's point of view, the update will take a humorous look at the way a 10 month old experiences morphine withdrawal, with particular attention to the side effects of INSOMNIA, EMOTIONAL LIABILITY and HALLUCINATIONS. It will compare and contrast the feelings of relief and frustration at the fact that, after enduring 10 hours of crying, a dose of benadryl and enough rocking to make mom seasick, Toby just wanted to play with his tambourine that he got for Christmas.

Not to worry- -the update will end on a positive note as, once again, Grandma steps in to save the day.

Until then, I'm off to sleep, shower and gear up for another night...

Lyss, Rob and Toby-who-is-still-awake-by-the-way

Sleepless nights

Posted January 19, 3:48 p.m.

I’m back at the hospital and my little guy is still refusing to sleep. We are pretty sure this is morphine withdrawal but it’s hard to know without being able to ask him. Last night was one of the most challenging nights of my life. He we started bedtime at 5:30 because he was SO tired he couldn’t cope. It was an ongoing process of rocking to sleep and then putting him down and having him start irrationally and hysterically crying as soon as our hands lifted off of him. After a few cycles of this he stopped settling even in our arms, . By 2 am we were both exhausted (at least, more exhausted than the usual state of exhausting we’ve become used to) and soooooo sorry for Toby who was obviously exhausted but NOTHING we did could help him to sleep.

I know I’m contradicting my previous SWEEPING statement of shock and horror when the ICU nurse suggested we try chloral hydrate to get him to sleep. By 2 am I was ready to try some benadryl. When you’re dealing with an insomniac 10 month old who is picking at his body its easy to convince yourself that perhaps he’s itchy and if benadryl has the possible side effect of sedation then maybe it would be worth at try :). It took 3 of us to get it into him and just as the hope started settling in he barfed it all up. So now we were exhausted AND covered in vomit.

It was at this point that Rob made the brave suggestion for me to go home. Perhaps my pacing around the room wasn’t helping. I certainly wouldn’t sleep well if my mother was pacing around MY room. But hey, we were trying anything at this point.

I feel like this post is harping on the negative. So I’ll add some of the good things. We saw his smile last night. Now, granted it was such a psychotic smile which came after he started to pluck things out of the air. And it was associated with a crazy LAUGH (which was great to hear, but somewhat inappropriate as it came out of the blue while he was sitting in his crib at 11:45 pm). That was the hour where we looked at each other and said, “Hmmm…he seems to be hallucinating” but it was still great to see his smile and hear his laugh. We aborted the sleep mission for 30 minutes and turned on the lights and enjoyed playing with him as he continued to laugh hysterically at the teddy bear (which has been sitting in his crib with him all week). He must have seen it in purple with three heads or something REALLY funny like that. It didn’t seem all that funny to US at the time but it was a welcome break from the monotony of Brahms Lullaby and incessant rocking.

The other positive (and this MAY be a bit of a stretch) is that he had 2 poopy diapers overnight. After 3 days of nothing at all, we were glad to see that the lactulose was working again. And once again, being able to turn on the lights and do something productive, even if it was just changing a diaper, was another highlight of the night for me.

So…I left my dear husband at 3 am and went to my parents’ house to sleep. The nurse used some miraculous “fish-mouth-neck-stroking” moves to get the next dose of benadryl down and I went with the assumption that it would help in some way and took the opportunity to go so we wouldn’t both be…what comes after sleep deprived? More sleep deprived….the next day….Rob told me this morning that he eventually fell asleep at 5:30 and was up again at 8 am. We have a LOOONG day and night ahead of us.

I’ll end this post by remarking on what strength Rob has. Everyone has been saying how strong we have been to be posting the updates that we do. And I thank you for that. Although the candid posts are my domain, the real strength has come from Rob. I was done last night. It all accumulated into one moment when I couldn’t do it anymore. And Rob took a deep breath and sent me home and was able to carry on for 4 more hours, providing our sleepless baby with the love and support of two parents all on his own. I don’t know how he did it but I’m sure glad he could. I’m a lucky person to have such wonderful boys in my life- - Toby and Rob.

Love, Lyss, Rob and Toby the Tired

PS In the 10 minutes since I've been sitting here at Starbucks posting, I've already overhead a girl talking on her phone to....guess who???...I'll give you a hint...she started the conversation with "The engagement was SO EXCITING that I can't WAIT for the Wedding". I am now sitting at the OPPOSITE side of Starbucks. Three's my limit.

Meanwhile...on the other side of Starbucks

Posted January 19, 3:54 pm

Well, life on the other side of Starbucks isn't much better. I'm now sitting beside a crazy lady who is PRETENDINNG to drink Starbucks but is just using the cup to spit into. She's also singing to herself (which was nice for the first few minutes) but took a break in her singing to announce (loudly) to me that "IT IS A BLACK, BLACK MONTH". You know – that’s not something that parents want to be hearing here at sick kids.

As I was finishing my post she secured her spot as "the crazy lady" be leaning over (and almost spilling her spit cup onto my computer) to ask if all of "those buildings" (being the elevators and the wards of the hospital) were "Nice restaurants". When I told her politely that they were NOT nice restaurants but the cafeteria was around the corner she yelled at me, shook her head and pulled out some knitting.

I think I'll go back upstairs now. At least Toby SMILES while he hallucinates.

Home at last

Posted January 20, 7:27 p.m.

I thought this day would never come. I thought, when it did, that we would leave skipping through the hospital in giddy excitement. I thought we would stop by the ICU so he could meet everyone as his old healthy self.. I thought I would be eager to go back to work and resume normal life.

If I've learned anything this past few weeks, it’s that you can't predict anything.

We left the hospital today in a surreal fog. I was happy to be leaving. I was BEYOND happy that Toby is better. But I'm scared and apprehensive about the next few days ahead. I feel like I've lost the ability to put my child to sleep and to decide what and when he eats without weighing his diaper and recording things on a computer through a nurse. I wonder how we will trust that he's OK throughout the night without the trusty O2 sat monitor on his big toe, constantly reassuring us that his heart rate and oxygen levels are in the normal range. I don't know how I'll be able to sleep 8 hours in another room from him, let alone leave for work in the morning and think of something OTHER than minute details of his bodily functions, for a full day.

Each day we take baby steps. Today we took a HUGE step. Don't worry- - we took lots of photos . We smiled a lot. We fought back tears. And right now we're all safe and sound in my parent's house- - Toby is in a familiar crib, surrounded by love.

We are SO thankful that this whole ordeal is over and thank you all again for taking this journey with us. I have more to share - -including photos- -but first I'm going to go eat something...and maybe enjoy a nice glass of red wine...

Love to all,

Lyss, Rob and Toby

The things we've learned...

Posted January 20, 10:27 p.m.

What I've learned from this ordeal...

1. Life is unpredictable.

2. Starbucks really IS good coffee.

3. When you see someone breaking down in the hallways, don't stare

4. Trust your instincts

5. Take the stairs -- even if it IS to the 7th floor...its as good for your brain as it is for your body

6. Friends ARE family. How lucky we are to have them both

7. Write.

8. Let people help

9. Chocolate chip cookies are a good substitute for breakfast, lunch OR dinner

10. Drink water. You may not feel hungry, you may not feel tired, but thirst will get you first.

11. Don't cry over broken computers.

12. Know your child.

13. Read.

14. Plan your wedding in a discreet location.

15. No matter how hard things are on you -- it’s even harder on your mother.

16. Acknowledge people's concerns or emotions- - no matter how irrational they seem to you.

17. Have children

18. Become a mother.

19. It’s ALL worth it.

...and last but not least...

20. No matter how tired you are, at least you don't have to go to 10 inaugural balls tonight....

Final Update

Posted January  22, 10:37 a.m.

We're home at last!!! I can't believe we're finally here, safe and sound, all three of us!!! WE arrived home in the afternoon yesterday and had been treated to a visit from the Holloway fairies who left bags and bags of groceries, a new toy and book for Toby and had shoveled our front steps. What a treat!!! It’s SO good to be home.

Toby had a good afternoon exploring his toys - -he remembered some things right off but is still very cautious and moves around quite slowly. I don't think he remembers that he can just crawl over to things whenever he likes. Although I'm antsy for him to get back to 100%, I know I should enjoy this slightly calmer version of Toby before the chaos resurfaces :) The other new thing he does is reach out with one hand and wave it around above his head. He does this so often that I finally started saying to him, "are you waving to your guardian angels?" Maybe he's thanking them for a job well done...or maybe he's waving them on and letting them know that he's OK.

Life is slowly getting back to normal. I realized this for sure today when I got an email from my mother detailing every spelling mistake and grammatical error I'd made in my carepages updates....  I have to hand it to her- - she did a great job of biting her tongue this whole time. In fact, she did a great job at EVERYTHING she did these past 2 weeks. We couldn't have made it without her.

It finally hit me last night when I was going to bed. As I pulled back the familiar sheets, I suddenly remembered this feeling I'd had that first night we tucked into bed in the pull out couch in the parents’ room of sick kids hospital. I remember crying myself to sleep that night and LONGING for my bed at home. And the thought of everything we would have to overcome before we could get back home made me realize how far away it was and what a long journey we had ahead of us. Or the heart stopping alternative- - that we'd be home sooner. How could I possibly bear to get into my bed ever again and sleep without my Toby in the next room? The fears and reality of our situation were more real to me that night than at any other time and the feeling it left me with drained my heart and my brain....

So last night, when I got into bed, the reality resurface and I realized - -it was over. Thank God we were led down the path we took. Thank goodness Toby has so many guardian angels - some alive and some not. You know who you are... And thank heavens for Holloway fairies and all of the friends who have helped us on this journey. As Shania says, "From this moment I have been blessed. I live only for your happiness...My dreams come true because of you....from this moment on...."

I guess this will be the last update on our website. But I'll keep you all posted if I do decide to start my own "blog". I have truly loved writing and recording everything and sharing our story with such a caring, loving and supportive community. But I do warn you - -I am not expecting anything EVER again in my life to be as "exciting" as these past two weeks have been....so it may be a boring blog. Here's to that.

I'll conclude with a word definition (to make my mother proud...)

We chose the name "Tobias" partly because we liked Toby. Partly because there has never been a grade 8 student or a Camp Kirk camper named Toby. And partly because of its definition...."God is good."

Love and thanks to all of you, dear friends,

Lyss, Rob and Toby Bear