Home is Wherever Mr.B is

Okay Momma, time to take this thing off now!

HOME!!!  Yippee!  We brought Mr.B home on a weekend 'pass' to see how the new feeding schedule will work out at home.  It was a bit questionable last night if we'd be able to come home or not as he was showing signs of Rotavirus virus but we were still cleared to come home.

Asleep in his own bed where he belongs

We did complete B's contrast study yesterday and it showed...nothing.  Nada, nilch, zero...which is awesome don't get me wrong, but frustrating too.  That means that there is still no answers as to why any of this (the inability to tolerate food) even happened to begin with.  It was incredibly stressful going into the test just knowing what he was going to have to endure but my child, my Angel, was such a trouper through it!  Mr.B was so fantastic, yes he cried and yes he was miserable but he/we got through it.  I am pretty well known in the Diagnostic Imaging rooms (who am I kidding probably the whole blooming hospital) as the 'singing Mom' and I did just that, I sang and sang.  B is really very soothed by music so I don't much care about the world around me, I sing, a lot...like all the time during tests.  I'm fairly certain that I might drive some of the techs and such a bit crazy at times but it is really all about B, all of it.  If there is anything I can do to soothe him and comfort him I will certainly do just that!



Yippee!  Look at me!!  Bye-Bye ACH!

It was a fairly hilarious trip home as Mr.B has finally graduated up to a 'big boy' carseat and is now facing forward.  He was just taking in everything around him that he could see out his window and giggling.  He was happy to be home as well but I really do wonder what goes through his mind.  You've gotta wonder if he thinks it's just for a 'visit' or not since the last time home was very short.  It took a bit to get him settled tonight and it will certainly take an adjustment period for me to figure out a feeding schedule that will work.  It feels a bit like we might get into a routine of sorts and then we'll be headed into surgery.

Arriving home

Oh yes, surgery!  We've got a date for August 7th and we've got the new g-tube, ear tubes and the GI scope on board.  I don't know what happened with the Opthamologist, I don't know if Sheena ever heard back from him.  I guess that will just be for a later date.  I did also put in a last minute request if there is any way we can get his teeth cleaned at the same time.  With the severity of his oral aversion I can't get near him with a tooth brush.  He still only has the one little front tooth on the bottom but he's now up to four molars and they are not getting cleaned.  I really don't think we need to add dental issues to our list just yet!



Okay so Mr.B might not have been as impressed...sorry boys!

We had a bit of a blast on Thursday, it was a crazy busy day but full of fun for the kids.  The big boys attended a 1/2 day of school to wrap up the school year since they missed the last week due to the floods.  They got a chance to get all of their 'stuff' (I have NO idea when I'm going to sort through it all) and they got a chance to see (most of) their friends to say 'have a good summer'.  I think it was certainly a harder time for the teacher then it was for the students and parents, we'd already had a taste of summer!  The boys got to have their final 'fun lunch' as a picnic outside of the school and say their good-byes.  We jetted off to ACH to join in the festivities of the Canada Day Party in the main area.  As well as Canada Day they also invite the Stampeders to come each year on the day before their opening game.  I have to say that the two times I've met some of the team I've been impressed.  They are really nice guys that take the time to be patient with the kids (and the parents).  I applaud the Stampeder's organization for it's commitment to giving back to the community and their participation at ACH.



After the party at ACH we zipped off to the boy's first swimming lesson at the Highwood Pool and the boys did a great job!  I have my fingers crossed and re-crossed that they might finally get the beginnings of swimming.  Torin seems to have turned a corner this year in his sensory issues and water...he was excited to go to swimming lessons, YAY!  I am so proud of the both for their bravery!



Peeking out his hospital window at
the world outside

Mr.B had his own 'moment' yesterday, the next few pictures will tell the story but I have to say just how much this child amazes me.  He might have zero strength on his lower right side of his back but he is really adapting life to his own.  He is getting so much stronger elsewhere that he is finding himself getting faster at getting around and trying new things.  How can you not be amazed and inspired at the strength and perseverance that this child shows each and everyday?  I am simply astounded at his ability to adapt to his situations and I can only begin to imagine where we will go from here!


Gripping the couch to hold himself upright

 



Using Ashley's help to follow the people he's watching outside

There's no stopping his curious mind!

And of course...he's stuck, again.

Resting his chin on the couch and just
daydreaming about being outside

From Our HOME To Yours...

Radioactive Baby

Um, Little help here maybe Momma??

It's funny how each time you (we) go into Emerge the thought is always 1) whether or not he'll be admitted and 2) for how long.  I certainly wasn't expecting a 3 week (and going) visit this time around that's for sure!  It really just goes to show you never know with this kid!

I didn't do a post last night so that I could go to bed early (kinda) and take a sleeping pill.  I did do that but unfortunately felt more tired this morning...I don't get this trying to sleep thing I guess!  Frustrating!

Pink Jailbird!  Love the hospital jammies, guess my Mom
should do some of my laundry!

The exciting news of the day (well one of the exciting things)...is that my In-Laws should be arriving at my house shortly after a very long trip in from BC today.  After all of the road closures and construction I'm sure they're going to want to sleep for a week straight but I think T and Ry will have other plans!  The boys are beside themselves knowing they were going to be arriving (of course they think they'll be here tomorrow...surprise!).  I'm so looking forward to see more smiles and more laughter at home, not that the boys aren't 'happy' kids it's just that life is that much more wonderful when Grandparent's (or Aunts and Uncles) are involved!

Nurse Stephanie!  My Momma met Steph when she was
pregnant with me before she even became a Nurse at
ACH so I love her that much more for altering her
career path to take care of me...:)

So about this BIG Metabolic test that has been stressing me out with a non-stop stress headache?...Monday it was postponed due to all the issues with the flood, Yesterday they came in to do the test right after he woke from a 3 hour nap (unprecedented) and told me they want him asleep for it (whaaaaaaat??) AND today we scheduled it for a time that he 'should' be napping and the little Turkey wouldn't go to sleep!  I finally got him down 1/2 hr later than planned and the lady doing the test was supposed to be paged.  Somehow, somewhere the page wasn't gotten and she came down after he'd been asleep for 1 1/2 hrs and he promptly woke when she put the cover over his head....seriously.  I asked her if she wanted to run it anyhow and I would try my darnedest to distract him but she said if he got at all upset the numbers would be off....ugh.  This poor boy has had to go without food for a minimum of 4 bloomin' hours before the test each day...no more.  Dr.Volmiero called it quits to the test, it's just too much for data that isn't crucial to his wellness.  Frustrating (from the inability to just 'catch' it, not with Dr.V's cancelling it).


This boy and music!  He is always enraptured with
Sarah the Music Therapist.

All in all B's been holding steady at his 100 mls/hr boluses with continuous overnight feeds.  He's still retchy but not full out retching (generally) which is great.  Dr.V's in no hurry to push him (which is wonderful since she's probably getting pressure to get us out of here), she's willing to let him go slow and steady.  We've also decided (I like to think my opinion matters here!) to do the full contrast study which will look at his whole gut, stomach to bottom (no pun intended...okay maybe it was).  Yes it is more contrast (radiation) and yes, yes, yes more and more xrays but I really feel like we (the proverbial 'we') are missing something.  The more Dr.V, Dr.Brindle and I talk this through it just doesn't make any sense (shocking with Braeden).  How and why does he handle 250 mls over an hour for weeks and weeks to barely being able to handle 100mls in that time frame now?  It just doesn't make sense, there are no real symptoms and no other major changes (aside from the retching and pain).  I'm happy with the decision to look further and yes, it sucks that it has to be another contrast study but I don't think I'll be happy without it...I'm worried about him (no surprise there) and very concerned about what this means going forward with his feeds.

Who doesn't want a 'pants' hat?  Yes, my Momma paraded
me around the entire Unit last night like this...sheesh!

Mr.B was an absolute card tonight for Dr.V!  She was crouched on the floor with him and he was doing circles on the floor around her.  Completely showing off all his moves and having all of us in stitches!  He was doing some forward crawling and we all cheered so he stopped, looked at us, then (as I narrated he would) rolled onto his back so he could clap...brilliant (I soooo wish I'd recorded it)!  Pretty sure he made Dr.V's day.

Volunteer and Friend Dana came by for a visit.  I had to
show off my house and doorbell for her!

Slow and steady is how we'll proceed and I'm not too sure when the contrast study will be yet (in the next two days).  I am hoping (fingers crossed) it is Friday, not tomorrow simply because the kids go in for a 1/2 day tomorrow (since school was cancelled due to the flood) and I would hate to not be here.  The only thing worse then having to watch you child be strapped to a board screaming is to NOT be there with him.

Showing Nurse Jenny how to clap!

Mr.B continues to be his usual entertaining self and after three weeks of hard work and perseverance (by his Nurses) B started blowing kisses yesterday and again today.  He's only done it a few times but man, once this kid sees the reactions he'll get he'll be giving them out left, right and centre, just you watch!

On the flip side Mr.B's been coughing more and more the last 24 hrs...but I am trying to ignore it (not really).  Fingers crossed and positive thoughts that this is just passing through please!

Life continues to be difficult in terms of finding our (my) balance but at least some of that will be alleviated even further with the arrival of the Grandparents.  School is 'officially' out tomorrow and summer is upon us.  Adventure awaits...(if you don't count this non-stop adventure ride I'm already on).

I wanted to share with you the most amazing quote that I came across today as well:

 

"Perhaps strength doesn't reside in having never been broken
but in the courage required to grow strong in the broken places"

 

I simply love it!

 

From Our Home (Hospital Room) To Yours...

Room With A View

I just have to say that this city and it's citizens are amazing!  There was a call for 600 volunteers today for various tasks and (I think as there are mixed reports) that as many as 7000 people showed up to help!  Way to go Calgary!!  I'm still trying to figure out how and when I can be of assistance for the clean-up so if anyone knows of some smaller jobs please let me know as I'm happy to help!

Onto Mr.B...

Just chillin' with my (upside down) book

Happy Dance, happy dance...we have our own room!  Yay!  It was a long 5 days in the procedure room that's for sure but we made do and B really trooped through it.  His Nurse Rose put him in his bouncer in the door way a few times in the past two days so he got lots of lovin' from the traffic going by.  I can't even count the number of Nurses that commented on his smiles that he was freely giving out!

Waiting on my Girlfriends...

I can't even tell you how happy I am that Mr.B will finally get to see some daylight again!  It is hard living without a few things at the hospital but to never know the time of day is awful, simply awful!  Not to mention how much easier it is on our bodies to have some hours a day of 'natural' light and not the constant of halogens.

The boys and I went up for a visit tonight after dinner and we took Mr.B for a short walk around the hospital (gotta do all the floors and elevators of course) and when we got back to the room B's face light right up and he just beamed when he realized that "The Cat in The Hat" was on TV!  Hilarious!  It is sad when you realize that TV is one of the saving graces of hospital living...hard not having it for 5 days.  Keep in mind this is an active toddler who wants to go and interact and be entertained!

Apparently all of my anxiety leading up to the Metabolic test today was for naught...it was postponed until tomorrow...sigh.  I understand the need to postpone it, I am just feeling stressed knowing the B will be stressed.

Yesterdays bathtime bonanza!

His feeds seem to be going decently although he has had some tummy pains again the past two days.  He is up to 100mls over an hour every 2 1/2 hrs and all night feeds.  Everyone keeps asking me when we are going home and I'm not too sure.  I am thinking maybe as soon as tomorrow but more realistically maybe Wednesday?  The all-night feeds are going to be an at-home challenge but we'll figure it out and survive, we always do.  Envision a tube from his stomach attached to a tube running food and said tube comes detached during a night terror...ugh, mess.  Not to mention his feed is only good for four hours so his Momma will be getting up to warm new feed, clean/wash out the bag and reset the pump every 4 hours (not like I sleep anyhow right??).  All in all, it will be nice to be home again and to try to find some sort of rhythm for the summer months.

Getting a wee bit big for this but man was he happy to be in water!

Torin is on me repeatedly  lately asking if we are going to BC this summer.  I've not said anything to him about the possibility of a trip but he remembers the years gone by and he was devastated about not going last summer (some of you might think devastated is an overstatement but to a child with Autism it really sums it up).  I would love to go, few things would make me happier but it is looking less and less like a feasible option.  Mike certainly has more and more on his plate with his site and there is no way he'll be able to even have a weekend off this summer let alone any time to travel (to come out and drive back with us).  Dr.Brindle did mention she's gone for the last week of July and first week of August so we do at least know surgery won't be those two weeks.

Not too sure who is a bigger flirt?

I ran into Dr.Brindle today and we chatted for a bit about B and she'd seen him that morning and was pleased he was looking so well.  I explained that he'd been having 'pain' episodes again the past two days and she took some time to re-look at his xrays as well as his last contrast study with me (which I can only assume she was supposed to be doing 100 other things).  She said there really was nothing outstanding to her on it except for the fact that when they did the contrast study they were searching for upper GI answers (like if his Fundo was undone) and not looking at the whole gut.  It is possible that his 'problem' area is lower down and that doing another contrast study that follows it through might give us a better understanding of what is going on.  Since it is a wee bit of an invasive study they will only proceed with it at this point if B has trouble maintaining his feeds going forward.  

Dr.Brindle did mention as well that there have been numerous surgery cancellations and such with the flood issues so she really has no idea now what our time frame will be for surgery.  I know she has us in the back of her head though and if something comes up she'll think of B.



So very stuck...again (am thinking I should make a 'stuck'
photo album)

I'm not too certain what Dr.Volmiero's plan is for the feeds at this point, she was so very busy with other little ones today that we didn't really spend any time chatting about B (completely understandable).  I think we are getting to a point (fingers crossed) that will be adaptable to living at home.

Tomorrow we are onto the Metabolic test (which no one seems to have really seen or heard of...) and hopefully a pain-free tummy day.

I have to give some huge Thank You's! 

Thank you Gina for taking the big boys off my hands on Friday when the schools were closed unexpectedly from the flood.  Thank you as well for offering before I'd even thought about the fact that I was going to need help!  AND Thank you as well for going and picking up my 'essential' needs off my grocery list (after having my kids over to play AND during the craziness of the State of Emergency when the stores were crazy!)...you're wonderful!  You said you'd wished you'd been able to help me more?  Friday was a dream come true my Friend!

Thank you as well to Lisa and Preston for offering to take the boys today.  Not only did my kids get in a great playdate with their buddies, they got taken out to lunch AND a movie (with treats)!!  Both boys were so happy, relaxed and exhausted tonight!  Can't thank you guys enough for taking them again!

I honestly don't know how any of this journey would have been possible without our amazing friends and neighbours that have been willing to help on a moments notice time and time again!!  Thank you!!!

From Our Home (REAL Hospital Room) To Yours...

Hangin in the Procedure Room...Still

Day 2 of Calgary's State of Emergency and it is still very surreal...the sun shone today and from my end of this city you'd never know there was crisis elsewhere.  I've heard many stories today about families evacuated and people that have possibly lost everything.  I chatted with a Hutterite gentleman tonight at ACH and he was telling me stories of his community and how some people have lost everything.  We (I) think that this is just affecting highly populated areas, of course that's not true...I am intrinsically a 'helper' and it pains me that there isn't anything I can do at the moment.  I do have a few ideas though and I will keep you all posted.

There is a family that is part of the ACH family here that is displaced from High River.  B and Sawyer were next door neighbours in PICU when they were tiny so I have spent many a day seeing their familiar faces.  They have 5 kiddos and their little one had lived here at the hospital for 568 days (yes, almost 2 years).  They JUST got to take him home this week to High River only to be evacuated by boat only a few short days later.  They are back here in ACH so he can be properly cared for (he's on a ventilator) but they are now displaced with 5 children and only the clothes/toys with them.  I asked how we (I) could help today and she said they are okay right now with clothes and they have a place to stay but they are short on toys and entertainment for the kids.  If anyone has any ideas or electronics that they would like to donate please let me know! Here is their story...CLICK HERE and then click on Sawyer's Story.

Jumpity jump jump

Other than the chaos of utter devastation in the city (be thankful for all you have everyone)  Mr.B had a pretty low-key day.  He had Rose for his day Nurse who he's gotten to know so I took the morning to spend at home with the big boys and made them brunch (no guilt...who am I kidding?).  I realized awhile ago that B's been bored but I figured today that I would bring in his bouncer for him to give him some exercise.  He was very slow to jump in it which is hilarious because he used to love it so much.  He did seem to remember it after a while and then went to town.  He pretty much had every Nurse on the floor come to see who was making all the noise (we've not been kicked out yet).

climbing the walls...

I also had him out on the mat on the floor as well but he gets quite frustrated that I keep putting him back on it...the floor here scares me a bit.  I let him crawl a bit and then feel panicky that he might catch something else (that was brought in on a shoe?) and put him back on the mat.  He is getting really good at moving forward though, he's so very determined at times.  I think by the time I get him home he'll be mostly moving forwards because he is seemingly headed in that direction (when motivated).



Pretty sure Allison was more entertaining then B...count the
legs, he's a popular guy!

The only 'odd' thing of the day today (with B that is) is that he had some fluid coming out of his left ear.  I saw some wax on his ear lobe and rubbed it only to find it was wet.  There isn't too much to worry about, it was clear fluid.  The Resident came up to take a look and she said she can't really see if there is a hole in his membrane or not but it could be the source of a fluid leak.  He's not got any swelling or pus in the ear so that's a very good sign.  He doesn't have a tube in that left ear drum anymore and has had fluid behind it for quite some time now so I wouldn't be surprised if it has a leak now.  He is also on two antibiotics that he takes daily for other things so it could just be keeping the infection at bay enough to not get much worse.  The only other thing is that he's been running a low grade fever on and off but again, it's not all the time.  It is simply another 'wait and see'.

Breanna and B...if only I could take these Nurses home!

The craziness of the hospital has seemingly subsided a bit today as well with the openings of many road in town.  We were looking at possibly being moved to Rotary Flames House at one point last night.  We are still in the procedure room as the Unit is still full but we are making it work.

'Chatting' with the brothers tonight on Momma's phone

The announcement has just come down tonight as well that our school's will be closed again on Monday...I think the school year could be done early.  Not great timing for us, that's for sure!  I am counting down the days until my In-laws arrive for some much needed entertainment for the big boys!

listening to my 'tunes'

From Our Home (Hospital Room) To Yours...

Back Into Hospital and Calgary In Crisis

So many lives have been changed dramatically in our little piece of the world in the past 24 hours...we (in Calgary and Southern Alberta) are in a State of Emergency from flooding.  That being said, we (my little family unit) are fine (mild basement flooding), we are up high above the rivers but many of our friends are not.  So many are in fear of losing everything but what they left their houses with after being evacuated.  Please, if you can take a moment to send some positivity out into this vast universe of ours for them.

Mayor Nenshi (Calgary's Mayor) was speaking to a CNN reporter this morning and they couldn't understand why our temporary shelters weren't full of 10's of thousands of people.  The Mayor responded in kind that we are Calgarians and Canadians.  We certainly are and I sincerely hope we will get through all of this as a community and a city.  If it would just stop raining...


Onto Mr.B...

Playing with his hospital drum (compliments of Nurse Breanna)

We are back in hospital, we did make it until Thursday.  I was tracking his feeds at home and he was only able to handle every second or third one (completely) even though we'd moved to smaller feeds.  The issue he's having is that he'll get 1/2 way into a feed and then just start screaming and hunch over into the fetal position.  Not what a Momma wants to see.  If I vent him at this point (essentially pulling feed out of his stomach) he'll settle but the moment I put any of it back in it is the same reaction.  This is how we woke up yesterday morning so needless to say the boys didn't make it to school on time.  B's been really cuddly/clingy lately too and I couldn't put him down for an hour and a 1/2 or he'd scream.  So after calling Dr.V to explain all of this she told me it really was just best to bring him back in so she could actually lay hands on him.

Back in we went but not before having to explain to his brothers that he'd not be home again when they got home from school.  I dropped two sad little boys off at school (only 45 mins late mind you!) and came home to pack.

Stuck

I tried to pack lightly knowing we'd be in the procedure room but it is hard knowing what toys will interest him.  I got him settled in and had to head out to pick up the big boys from school.  When I got back to ACH Breanna (Nurse Extraordinaire) told me he'd had a nice 'screaming' episode for her when she ran his feed as well.  I was very happy to hear that, not for the fact that he gave her a hard time but because he did for her exactly what he'd been doing at home and it was now documented.  As if this boy wasn't confusing enough!

And...stuck here too

What the basic consensus is (after much head scratching and shaking) is that he's just unable to tolerate any amounts of feed over about 100mls (less than 1/2 of what he is supposed to eat and USED to eat per feed).  Dr. Volmiero went back through all of B's last two weeks with a fine tooth comb and figured that he'd just been pushed too fast with his returns to feeds.  She also explained to me that during his last contrast dye study that they'd inserted about 100mls of fluid during the test and that his stomach was very distended with this volume (of course keep in mind this was put in over 5 mins).  It would seem that his tummy just doesn't 'stretch' like it would before all of this started 2 mths ago (when all the retching increased).  The other thing to note is that the contrast study watches the stomach empty (which his does well) but it's not like they hang around to see if it stays empty...my hypothesis (yup, my Medical opinion) is that if there is in fact a motility issue in the intestines that the stomach empties well into the intestines  but then hits the motility spot and can't get processed fast enough thus backing up, causing him to feel ill (retching), increasing oral secretions (clear snot out of the nose) and on and on.

What the heck do we do now?  Well Dr.V's put him on 24hrs of continuous feeds to give him a break and to give him a full day of calories.  We'll start with small feeds again tomorrow run over an hour with an hour off in between for the weekend and then she'll re-evaluate Monday when she's back in.  There really is no real rhyme or reason to all of this, it is just Mr.B being, well, Mr.B.  I still have a niggling concern at the back of my brain that there is something more going on with his intestines and such but he is really soft and palpable when his tummy is examined.

I am really hoping that the upper GI scope that we're waiting for will give us some answers or at least guide us down a better path for his feeds.  The problem with that test is that it is part of the 'surgery' he needs to be under sedation for it and so they won't attempt that until he is at least 6 weeks free of infection (pneumonia).  We've only got another 4 weeks to go...yay?

In the meantime Dr.V has ordered a metabolic rate test for him as well that we were supposed to have done today but the tech had issues with all of this flooding.  We've rescheduled it for Monday but I'm really not too sure how it is going to go.  The Dietician explained it to me by saying that they put a clear plastic dome over his head measuring his oxygen and co2 emissions...oh and did I mention he's supposed to be STILL for this test AND it takes an HOUR??  I laughed and said he doesn't lay still for an hour when he sleeps and her response was that they generally hold the child down...for an HOUR???

Maybe I'll call in sick Monday...

In all seriousness, we are I think (oddly) fortunate to have the procedure room for B to stay in as the hospital(s) are bursting at the seams.  It is harder to be in here due to some limitations (no bathroom or window or tv) but we're making do and B can't be on continuous feeds at home, I just can't do it.  The biggest positive about this room though is that it is down the hallway on the way to the staff room so B gets to give out lots of smiles.  The other great positive is that he's got Breanna as a Nurse for the next couple of days as well.

I'm not too sure what I'm supposed to be doing with myself though, I know B is safe here so again I am torn about being with the other boys through this crazy emergency time.  We are in great need of milk and bread for the weekend but it would seem as though the grocery stores have been picked dry already.  It is hard trying to convince myself to leave when I know B is bored and there's not much I can do to assuage that other than being here (and that surely isn't always working either).  Once again I'm at an impasse with myself.

From Our (Soggy) Home (Hospital Room) To Yours...

Body Bags and Children Don't Mix

I'm not too sure how to write this post or rather how to start it I suppose.  It's been an interesting ride the past day and a half.

Home sweet Home

The short of it is that B is home, we came home yesterday.  He is doing 'okay' at home but it was a very rough day to say the least (more to come later).

The reason I didn't write a post last night is because something took my breath away yesterday and it's taken me this long to even start to recover.  I'm not sure why it has affected me so badly but I've been badly shaken and rocked emotionally.  

Yesterday afternoon I was just casually staring out of B's window (like every other day) overlooking the cafeteria and loading bays down below.  As I was staring into nothingness I started watching two men with a stretcher.  It is then that I should have stopped and walked away but it is like a bad car accident...you  s l o w  down to process it...it was a body bag.  A child-sized body bag being taken from ACH and loaded into a van.  Now I'm not daft, I know people die in hospitals but people please, I just wrote about how positive a hospital experience can be.  I am not naïve, I know people that have lost their children but I was so shaken to my core to see that smaller body bag that I can't even find the words to describe it to you.  It was simply, purely horrific and devastating to see.  I've replayed it over in my mind repeatedly and each time I feel a punch in the gut knowing that there were parents in the hospital with us that are s-h-a-t-t-e-r-e-d, broken, never to be whole again.

I am aware that children die at ACH, of course they do.  We've been oh so very close to being those people ourselves with Mr.B but for some reason in my head and in my heart children should not be in body bag, never, just should not.  I know it might be a bit hard for some of you to understand why I would take this so hard and I wish there were words to describe it.  There is so much wrongness in a child dying to begin with that I've never stopped to think of all the other 'stuff', the other parts that play out.  I honestly wouldn't have been nearly as disturbed to have seen a coffin instead of a body bag...there just seems to be more safety and security to a coffin.  I don't know.  I've cried a great deal of tears in the past 24 hrs for a child that I most certainly never knew or their family for that matter but more for the injustices of life. 

That being said, I've also had a hard 24 hrs with Mr.B too which doesn't help with my already overloaded stress levels.

My afternoon didn't get much better yesterday when B's Nurse came in to tell me (with so much regret) that we were being moved out to the 'procedure room' because another child needed B's room. 

The 'procedure room' on the Unit is just that a small, windowless room that is very basic (no bathroom, storage, or a place for the parent) and used for simple procedures or last minute patient storage.  It certainly does have a door and therefore offers some sort of privacy but it is certainly not a 'happy' or comfortable room to be in (or quiet, it is next to the automatic doors) to the staff elevators).  My immediate thought (that I voiced out loud) is that we'd just go home then.  Allison (our Nurse) told me that she advocated for us and that I should think about it.

Heading home (thank you Student Nurse Kelly!)

I was already upset and feeling incredibly anxious after watching the happenings out of B's window that I just felt all of the sudden so overwhelmed with all of it...with life...with B's never-ending GI issues...with having the big boys there with me making noise (being kids) and driving me nuts (overstimulated).  I just started to cry, I tried so hard not too but I was d-o-n-e.  Ashley, bless her kind heart, noticed I was sliding downhill fast, grabbed the big boys and took them for a walk.  Unfortunately Torin noticed I was upset and repeatedly asked me why (my tears are very upsetting to him).  I placated him the best I could until Ashley left with them and then I went into the bathroom for a good, snot down the face, puffy eyed, shoulder shaking cry.

The frustrating part is that I had been wanting to take him home, fighting to take him home even and finally conceded defeat realizing that it was just easier to stay in a few days longer.  Dr.Volmiero and I had had many, many discussion earlier that day about the best course of action and plan of attack regarding B's feeding.  I was simply so far past frustrated with having finally come to a conclusion that we'd stay till Thursday and give the feeds a few more days and THEN they say we are being moved.

I realized at that point that I really was so far past my stress breaking point that taking B home was really the only option for me, for us, and for B.  (I didn't make a decision that wasn't backed by the Dr. by the way, it was always an option, I was just trying to do what was best at that time and stay)  So I started to pack.  I told Allison with much sadness that we'd just go home, it was easier and I'd feel better.  I had no desire to sit in a little windowless room for at least 8 hrs a day for the next few days and watch B be miserable.  There are no hard feelings at all in regards to the decision to move us...it had to be done, they needed the space and B was the healthiest kid to move...an executive decision, that's all.

Dr.Volmiero came rushing in (she'd been paged) apologizing, and took one look at me and I started to cry again.  (Keep in mind this is the Dr. that 'Coded' B so she and I have seen some rough times together but I don't know if she's ever really seen me cry)  I had to explain to her it wasn't really the move it was seeing the body bag and then the move on top of that.  She gave me the biggest hug and asked me many many times if I was sure about going, and assured me that we'd make it work. 

She was fine with my decision to go and fully supported it and we decided together that I would take him home on a 'pass' meaning that if anything were to happen I could simply come back 24/7 to Unit 2 and they'd have to house us.  You might have remembered we've been out on pass before, it is something really great that they can offer you if you need that 24 hrs to realize you can make it on your own.  Dr.V even said she'd come to us if we needed her.  I would never ask that of her (this is a woman that is constantly needed in 16 places at once and she's a damn fine Dr. through it all) but it was so very kind for her to even say it.  She assured me she'd call us (and she did) and that I could call and have her paged anytime.  Did I mention I love it when she's B's Dr. on Unit?

Off we went after much fandangling with all of our stuff, three hungry kids and a sad heart. 

Playing on Ry's bed

The positives of yesterday were that we got into Seating Clinic, (thank you Colleen for giving that email) and got Mr.B's high chair refurbished (again).  It was a matter or removing some of the supports that they'd added last time and making some new ones so that he's fully supported.  For those of you with kids that can sit on their own, unsupported, you'd be amazed at what is involved for those that can't sit.

We had also brought in our stroller to be assessed at the same time (it hadn't been done yet).  I kind of had the idea in mind already that we were going to have to look at other options for the stroller just knowing how unsupported it was.  I had actually discussed it with Colleen (our previous PT through Home Care) when she stopped by for a visit on Monday.  I has asked her about options and admitted that I was well aware that B may not walk for several more years to come.  We discussed wheel chairs but there are also 'stroller' options available as well.  It is essentially a very cool, supported seat that you can put on a stroller base or a chair base (of sorts) for therapy uses.  I won't post much more about it until we have our appointment to see the different styles and make our decision.  What I will say though is that the seat part is covered by ADL (gov't Disability funder) after we pay our $500 portion BUT the base(s) are not covered at all and run at least $1200 to start for each.  Ouch.  We might just be seeing a fundraiser in our future, I'll keep you posted with what we come up with.  Apparently some people have had much success with approaching corporations looking for donations but we thought we'd do something with a personal touch for B maybe...I'm really not sure, I'm having enough trouble formulating sentences at this point.

Which brings us to today...did you want to go get a snack??

Mr.B had a decent first night at home, I was only up with him 4 times (which is stellar in my home).  Michael started him on his new feeding schedule at 6 am and his first feed was a full feed run over two hours.  B woke about 7:30, was crabby but otherwise good.  He however was not cool about being put in his carseat to take the big boys to school.  I think he thought that he was going back to ACH maybe!

Ashley got rained out of her job at the Golf Course so CFS was SO SO SO very kind to let her assist me for the day and man, did I need assistance.  We ran B's second feed at 10 am and it was a small one of only 175 mls over an hour and 20 mins...he should have been able to handle that.  He was sleeping through the first hour of it and I went to lay down but didn't sleep as I heard him fussing with Ashley shortly after that.  I still laid in bed, knowing that he was in good hands, but knew I couldn't sleep.  I got up and Mr.B was snuggled into Ashley on the couch and she said she couldn't put him down, he was miserable.  She said he woke screaming and was refluxing through the last 20 mins of his feed.  I took him to vent him to see if I could get some relief for him and when I vented him he seemingly got worse, not better.  Twice over the past few days he's screamed and rolled onto his side into the fetal position when he's being vented....scary.  Mr.B also only cries tears when he's in actual pain, he had tears streaming down.  After taking out a whack of feed (not to bore you with numbers) I got a decent amount of air out and I tried to get the feed back in.  As soon as I would put any back in (same as yesterday too) he would scream again.  Feed out, fine...feed in, scream.  I finally gave up at trying to get the 90 mls in and asked Ash to run him a bath to try to soothe him.  His intestines are so very sensitive and he always is seemingly in some sort of pain or discomfort with them these days (months).

Ding Dong! A favourite toy

The bath certainly helped distract him since he'd not had a 'proper' bath with his bath seat in two weeks.  He got to kick and splash up a storm!  His joy (and ours).  He was somewhat better after his bath but was still 'off'.  I had called to page Dr.V since when I'd talked to her when she called in the morning, everything had been going well.  I got transferred through to our Nurse Practitioner instead (Dr.'s right hand if you will).  I explained the situation, about the venting and the inability to get the 90mls in (he only got 85mls of feed total).  She explained that when I vent I shouldn't be pulling out feed that he can't handle the volume when it goes back in....long story short, I've been venting this kid for a year and I know how it works for him, it may not be the 'taught' version but it's worked for him (which is all that counts).  I ended up being very frustrated and felt somewhat talked 'down' to so I ended our conversation in tears.  Of course I got asked 'why I was now teary' and I simply expressed my exhaustion/frustration.  (I'm not generally a crier so I've kind of thrown everyone off the past two days).  It's certainly not the case that the NP doesn't care, I know she does, we just generally have differing opinions on treatments and such.  She's very clinical and practical and I'm, well I'm the Mom and make decisions accordingly.  Anyhow (this is the short version??), I ended up simply being more frustrated with it all. 

Ashley and I plugged along, meaning I was a stressed out mess on the couch and she cleaned for me (I LOVE HER).  Thankfully my girlfriend extraordinaire Lorna showed up with a 'picnic' lunch for us of sorts and gave me a nice distraction. 

So as to not make this the longest post to date (and the power could go out at any time with this crazy rain/thunderstorm), I will simply say that after much discussion (both with Dr.V and the NP on speakerphone and then again with Dr.V tonight), we are staying put at home for now.  I still have the option to go back in if we need to and I will reassess with Dr.V in the morning again.  B's feeds have gone better tonight but certainly not great.  Keep in mind, if I have to run five feeds a day over two hours each and he is only up for 10 hrs...it's hard.  He does get his first and last feeds generally when he's asleep which makes life easier but there is still 6 hrs in his day when he, a toddler on the move, has to be strapped to a chair...it sucks.

My positive end is that we ARE home and it is pouring, simply pouring sheets of rain that are cleansing to my psyche and my mood.  I love Calgary weather (as long as I'm not changing a tire on the side of the road in it. Been there, done that).

Perhaps I should put your names in hat for a door prize if you were able to make it to the end of this post??  Really, thank you for slogging through it, you're a trooper!

The laugh for the day...this is what happens when Mom isn't around
much for two weeks (and I sent him to a b-day party)...."they aren't
wings Mom, they are cool 'fire feathes'"...I feel waaay better now!

From Our (Stressed Out) Home To Yours...

We're Out...Oh Wait, No We're NOT

So funny story, I'm sitting here in B's hospital room listening to him sleep and looking at his discharge papers beside my computer.  Okay, not so funny really....here's how my day went:

I came in this morning with the high hopes that we'd be strollin' on outta here around noon, waving good-bye to everyone and sayin' "see ya soon!"...sooo not what happened.

In all fairness, my hopes weren't dashed right away, they took awhile!

I chatted with Rose (Mr.B's day Nurse) about how well he was doing and that we were headed out today.  B and I had a good play on the mat in his room and I put him back into his crib for his 11 am feed (I figured there was no point taking him home till after his feed to make my life easier).  He was about 3/4 through his feed when Dr.Volmiero and Sheena (NP extraordinaire) came in to go through the discharge. 

Sheena gave me all of his updated sheets and all of us new appointments that she scheduled and such.  As we were going through this Dr.V was chatting and playing with B and asked him if he wanted 'up'.  Now Dr.V is one of our favourites for many reasons but one of them is that she's the Dr. that B's had the most out of anyone in this hospital, she knows us, she knows B.  She picked B up and he started to pitch a fit! 

So much love and healing

Long story short we had a retching episode and they left while I was venting him but I called Dr.V back right away because he was retching out straight, bright yellow stomach acid (not white feed).  Really what we don't know is if being picked up put pressure on his tummy (he doesn't like to bend at the waist, it hurts sometimes) and he realized he wasn't feeling well, or if the crying kind of precipitated this?  Who knows.  What I do know is that when I finished venting him and tried to finish his feed he couldn't tolerate it, instant retching.  Sigh...

lounging in Momma's lap

Mr.B seems to do this, his tummy will plod happily along and then just decide it's tired and just stop cooperating.  We decided to give him a bit and let him settle and so I started to gather his laundry.  I realized that his sleeper and receiving blanket that I picked up was soaked in feed as well as the knit blanket in his crib...he'd lost his first feed of the day as well.  I asked his Nurse about it and she went through the notes and the 'leak' had happened right at shift change and the night Nurse thought he'd only lost about 30mls (1oz) of feed and gave him a bolus to make up for that loss.  I guess she didn't see the knit blanket (and it was still wet in the crib) because he certainly lost more than that.  He had the feed when he was sleeping and she reported that the med port opened up.  What I think happened (as has happened before) is that his tummy was under too much pressure (couldn't tolerate the feed) and it popped the med port open.  Thus pouring out his feed (stomach contents) and the rest of the feeding being pumped in would just leaked out.

So adding two and two meant that he'd now had two feeds he most likely couldn't tolerate.  Dr.V and I went round and round about possibilities about still taking him home by spacing out the feeds again and such but about the third time we talked about it she felt he'd just do better here.  I realized too that I was digging my heels in wanting to go home and in reality, we're already here and he can be watched 24/7.  It's simply just easier all around to stay in and deal with it all now. 

Here we are!  We've gone back to running the feeds over 2 hrs and that seems to be working well (one and a half feeds in).  He was apparently very snuggly and would not let his Nurse Allison leave his side after I left this afternoon (not typical B but maybe he just felt Ali needed extra love...don't tell Sarah, remember the pout from a few days ago?).  He was in good spirits tonight when I got here and we had a good play and such.  He did a big pain scream when Allison picked him up into a seated position though so it really begs the question of how uncomfortable his intestines really are at times.

"I love you so much BB"

I'm not unhappy to be here, really I have quite a good time being here (especially when Nurses get to the ends of their shifts and get a little giddy) when B is feeling good.  It's somewhat disappointing but also keep in mind that I never really lay down any set plans when it comes to B.  The hardest part is going to be keeping him entertained over the next few days while we adjust his feeds and such, he's simply bored.

Hospital living

I know some of you think life in the hospital is unimaginable but really, there are amazing people here that are a part of our lives and it is great to see them.  Yes, it is certainly harder and more stressful when B's not as well but it is still not ever really a 'bad' experience.  I quite love our ACH family and it's nice to be able to see everyone over the stretch of a few weeks and B loves the attention (who wouldn't?).

The moral of the story?  Onwards we go, if we need to be here then here we are.  There is still an end in sight, it's just a bit further then it was 24 hrs ago. 

The big boys were certainly disappointed (although I was very careful to say he 'might' come out today) and it certainly does make our day to day more difficult but we are in the swing of things now...I got this.

I need to also say a Thank you to Linda F., a reader that we've never met from Ontario who always has something nice to say.  Thank you for your gift in the mail today, it was a surprise and simply so very kind.

Also a Thank you for the entertainment given by Sarah and Allison tonight...I needed the laugh ;)

From Our Home (Hospital Room) To Yours...