Tuesday, 25 March 2014

A Mr.B I-Like-To-Mess-With-Doctors Surprise!!

WE'RE HOME!!!  Hurrah!
All four of my boys where they are supposed to be!

In complete typical B fashion (he likes to mess with people's minds) he passed his oxsymmetry (oxygen) test last night!  What does that mean?  Well we're home WITHOUT oxygen support.  How? How? How?  I swear he just plans to mess with people!  He was desating still yesterday on exertion and we all were expecting him to fail the overnight test...nope, not Mr.B!
Music Therapy with Sarah

It's great news (obviously) but since he was still desating yesterday this Momma is going to be a little (okay a lot) vigilant while he sleeps for the next I-don't-know week or so (who am I kidding, like it ever changes!  Sleep?  Bah!).  He was certainly excited to make the transition home and was overstimulated to the nth degree tonight with the big boys.

My van wasn't actually ready this afternoon (of course because why would I need it back?) so we drove home in another car which kind of threw B off.  When I got out of the passenger side door when we got home he pitched a fit thinking I was leaving him inside!  He didn't even give me a chance to get out all of the way to even see if I was taking him!  Nutbar!
Okay!  I'm ready to go now!!

He lovingly had a nice long, hot bath tonight and knee walked around the whole upper floor with my Isagenix bottles...such bliss for him.

He also went right to bed with no fuss at all (good) but I know not to get too comfy and relaxed, he is Mr.B after all!
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I'm feeling crappy due to another RA flare up (stress is a pain, literally) in my hip/back but am certainly feeling a bit more relaxed having all of my babies under one roof tonight.  We had a movie night to celebrate tonight and watch 'Frozen' for the first time (well I saw parts of it).  It's nice to be able to tuck all three of my kids into bed and be present for it all (not calling from the hospital to say goodnight).

Tomorrow we are back at ACH (big surprise) for an appointment with our Child Development Team nice and early.  It won't be long until we are back in the swing of this crazy at-home-going-to-ACH-for-multiple-appointments-each-week-life either.
Bye-bye (for now) ACH!  Thanks for taking good care of me (again)!

From Our (Snuggled Down For The Night) Home To Yours...

Monday, 24 March 2014

There Is No Place Like Home

There is no place like home....well we're not there yet but we are lookin' to spring this joint tomorrow afternoon!  I'm even willing to take the risk and say it (or type it) close to B because he's SO ready to be home.
Ready to come out of my cage...

Rental car goes back, I get my van back (my $2150 bill to go with it...wahhh and damn cement wall that got in my way when the road was a sheet of ice) and I get my youngest home where he belongs...should be a good day!

He's certainly turned back into the full 2 yr old that he's supposed to be which means he's feeling pretty good (and so very bored).

We're still working on feeds but we are at least to a point where I can get what I need into him at home.  It will take another few days or so to get completely on track but I think we'll get there.  My only concern is how his guts are still not too happy about eating but I'm hopeful that they will settle down at home too.

We're doing an over night oxsymmetry test tonight (at ACH) to gauge his o2 needs.  Basically they wouldn't run it if they didn't think he'd fail...which is fine.  We can come home on 02 again, been there, done that.  It will certainly be more of an adventure since it's been 9 mths since he last needed it at home and he's waaay more active now.  Any bets on who trips on it and does the first face plant?!

It's certainly been a stressful visit, B's not been this sick (Respiratory sick) for quite some time (Christmas pneumonia aside) and I'm hoping that we won't have to be 'Stepped' again any time soon!  On the flip side?  It's been great seeing familiar faces again, both staff and family and being on Unit 2 has made all the difference with that.
I love me some Ry-Ry time! :)

So he's still not 'well' but he's certainly much less sick (pretty sure I'm writing the new English language here) then he was a week ago (or two for that matter).  I'm happy to work out the rest of the details at home, where he'll hopefully be in a 'cleaner' environment (okay, I had to guffaw as I typed that).  He'll be less exposed to the hospital germies (I'm sure three viruses are enough for now)!

Home is where the heart is...well home is wherever Mr.B is really! :)

From Our (Last Night On Unit 2 for now) Home To Yours...

Sunday, 23 March 2014

Dear Anonymous

Dear 'Anonymous',

The fact that I am taking any time and energy out of my day to address your 'comment' annoys me.  It annoys me that you've upset me and it annoys me that you've made a derogatory comment under an 'Anonymous' name and that I can't reply directly to you.

Here are the parameters of this site in case I've not been crystal clear in the past:

1) This is a blog written by Me for ME.  The fact is this is a blog written to keep me on this side of sanity while I deal with the pressures that life has handed me.  If you chose to join me on my journey then I'm happy to have you along.  HOWEVER there is and will be no tolerance EVER for any rude, inappropriate and inexcusable comments.

2) This blog is written for EDUCATION, to try to let people know about disabilities in an open and caring manner.

3) This blog is about TOLERANCE and ACCEPTANCE (again, see number one if you are at all confused)

I am disgusted and greatly saddened that you thought for even a moment that insulting any of my children could possibly be acceptable.  If you wanna see this Momma Bear mad, well then you've certainly succeeded.  My first reaction to your comment was extreme anger, with my heart in my throat but now I'm just sad.  I'm sad that for one second someone could insult an innocent, defenseless, caring, wonderful and angelic child.

I realize that by writing this blog that I've put my life 'out there' for the world to see and I realize that not everyone in this world has good intentions...BUT what I also realize is that I have the power to tell you that you are NOT welcome on my site ever again.  Ever. Again.

I have many, many other things that I could say to you and about your comment but then I'm not being true to myself.  My first reaction was to blast you but then hey, I'm no better then you am I?

This site is for compassionate, wonderful, caring and empathetic human beings only.  No negativity, drama, or derogatory comments will be tolerated.

I hope that you take the time to do something good for someone else today, Karma will see you coming (and so will my family and friends).

An extremely (trying not to use expletives) sad Momma

From Our Home (Unit 2) To No Longer Yours...

Saturday, 22 March 2014

Big Brother Love-Bomb

B was sleeping when I got there this morning with a stethoscope wrapped around him...
all the comforts of home!

Perhaps it's time for new jammies??
The funny thing that I realized is that the 'healthier' B gets, the harder his hospital stays become.  Now don't think for a minute I'm complaining that he's getting better, far from it, but he's bored and he's, well, 2!

Sweet moment
And...we're awake!
I've gone from having my heart in my throat watching him struggle for air to the same feeling but because he's bashing (yes, bashing) his two year old head into the side of the crib when I have to do something like go three feet away to the bathroom.  He actually bruised his wee forehead today and it saddens me that I can't just scoop him up and bring him home.  It also makes me realize that as he gets older these stays are just going to get harder.

I'm not a first time Mom, I've done two other 2 yr olds, but it's still hard not to react when he's self harming for attention.  I am feeling like a rookie at this again!  He was bashing yesterday and his Nurse looked in and I calmly confirmed that yes, he was bashing because I had to go refill my water bottle.  The hard part is that he doesn't feel pain like you or I, his pain sensors are very different.  He's had to deal with a great deal of pain in his little life (not to mention brain injuries and yaddas yaddas) so his pain tolerance is much higher than the average 2 yr old.

This too will pass (oh god I hope this too will pass!!!!!)...

Big brother hugs!

The wonderful part of the day was seeing B and his biggest brother Torin shower each other with love.  Rylan is running a fever and stayed home with his Dad which gave Torin the opportunity to come to the hospital alone with Momma.  B was SO excited to see him and as you can see from the photos, they were both pretty happy to spend the time together.  I had more than one person comment on their special relationship and I couldn't agree more.

Colleen (one of B's prior Homecare therapists) stopped by for a visit this morning and then went in search of a play mat for B.  I got B out of the crib and on the floor and Torin got down there beside him.  What happened next was pure magic!  Ohmygoodness we laughed and laughed.  B was SO happy and laughing SO hard that he was only sating at 72%.  I had to actually lay him down and get him to breathe a bit before I could let him continue!  Of course the fact that he was setting off the monitors just made him laugh harder...

The great health news is that B's IV was pulled last night (after it stopped functioning) and he's on his regular formula again.  We've switched all the meds back to his g-tube and he's doing well on them.  He was a bit leaky today but he was also trying to keep up with his big brother.  I've outlined his feeding schedule to titrate his feeds up over the next three days and then we should be able to COME HOME.

Finally a bath after two weeks for the stinky boy! :)

He is also down to a 1/2 litre of oxygen which is reassuring but now that he's more active he's having more desats.  It's not that big of a deal to have the occasional desat (we all do) but he's taking a bit to 'recover' from them.  We did do an hour on 'room air' today when I got to throw the stinky boy in the tub (12 days on IV means 12 days with NO bath) and he did okay but not great.  He was visibly working his shoulders after the hour (but sating well) so he's not ready yet and that's okay.  If we need to come home on oxygen supports, we'll come home on oxygen supports.  I have to stop and remind myself that there were THREE viruses in there and he's going to need three times the amount of support to 'heal'.

Reprogramming my IV pumps last night...

We did also get back his latest swabs and he is still positive for the RSV and the Adenovirus so we're still on isolation (which with all the bugs in the hospital isn't a bad thing but if I could take him for a walk life would be nicer!!).

WAIT!  How come you never ask for my 'serious' face Momma??

Oh right!  It's because I'm a goof ball!!

As I was having a chat with a friend today I was commenting to her that it takes a week to get back into the swing of hospital living but it takes two weeks to adjust getting back home.  Well hopefully as of Tuesday or Wednesday (shh don't tell B) we'll be getting back into the transition home.

Hangin' onto the crib for comfort?

Blankie boy!

From Our Home (Unit 2) To Yours...

Friday, 21 March 2014

The Raw Truth

Today was certainly a better day (as was yesterday) and Mr.B is getting to be more and more like his ol' self each day.  It never fails to amaze me how he can simply 'bounce' back from needing critical care.

B's oxygen is now down to only 1 litre which is just so great.  I'm sure we can wean it further tomorrow again and that he'll be able to come off it soon.  I know he'd like to get his nostrils back again not to mention one fewer set of cords/tubes.

It's been a hard two days because I've been spending time in meetings for the Critical Care Strategic Network that I belong to so I've been missing my B.  I did get my chance to tell B's story this morning to our group and it was very well received.  This isn't the first time that I've 'presented' his story but this is the first time that I did it from a 'raw' perspective.  I told it completely from the heart, reading from some of the early blog posts.  The group today were all professionals within Critical Care in Alberta (aside from the other Patient and Family Advisor like myself).  I wanted to really let it sink in how life looks on the other side of the bed in Critical Care, a true look at a Family's view.

It was an hour long presentation that I bawled my way through my dry (or wet rather) run of last night (thank you Ang for the songs).  It is so shocking to me when I read back through the early blog postings to just how much my poor child had to endure.  I lived it, right there in the midst of it and I still find it astounding.  There were lots of tears shed today (most of them not actually mine!) so I think that it was a success! :)

Part of what I missed yesterday with not being here was that our wonderful Dr.B came and swapped out B's g-tube for us.  B's tube has been leaking since this admission (which it usually does with being sick) but we couldn't find a reason for it.  We LOVE our AMT mini one (that I specially ordered through the US because it's not sold in Canada) but I was willing to go back to the Mic-key and give it a shot (the thought was that the internal balloon was maybe misshapen in the old one).  There is no real reason to why the Mic-key is working and the AMT is not but we've no longer got leakage around the stoma which is great news. 

For those of you not too familiar with g-tubes, the 'stoma' is the tract that the tube sits in (it is the tube from the skin into the stomach).  If there is leakage out the stoma then the child has stomach acid and food coming back out and it can break down the skin quickly forming sore spots.

The Residents weren't too happy with me that I didn't want them to start using the new tube yesterday, that I wanted to give his stoma one more day of rest (tube removal and insertion is still painful after two years).  I held my ground though (not like I wouldn't have) and we started running Pedialyte today and so far so good.  He's now on a continuous flow of Pedialyte and if he's still not leaking he'll be back on his regular formula by morning.  It will take another few days to work back up to his 'normal' feedings but we're on the right path.

Between weaning the oxygen and (hopefully) starting feeds tomorrow we're (me) feeling good that we might only need to be in another few days.  I'm happy to take his feeds slow but am also ready to go home away from all the other 'germy germs' here.

Now to just start again with getting his weight back up...

From Our (Unit 2) Home To Yours...

Tuesday, 18 March 2014

A Lovely Rotten Day

It was a good day for Mr.B, not so much his Momma! 

My day started out by stepping in cat poop (lovely) and it just got better from there!  Needless to say my van is now in the shop and the cement barrier won, I did not.  Gotta love (not) heavy spring snowfalls that leave amazing ice rinks!

That being said B had a good day and that is what matters.  He's been taken down to 1.5 litres on his oxygen this evening with success so far (we'll see when he falls asleep).  His energy level is still increasing and he's feeling in a pretty good mood for the most part (he is 2 after all!).

The major issue that we're still having (since this admission) is that his g-tube is leaking.  It started out leaking with his feeds but those have been stopped for days now (due to sore tummy with his bugs) and now it's leaking all the time just with his regular stomach fluids (nothing going into the tube).  It is very hard to know what the 'issue' is because from the outside it looks great.  He is crunching over in pain as soon as something does go into it though and he is in an upright position.

Best case scenario is that is the device is faulty (balloon is warped maybe?) and worst case scenario is another fistula has formed or is forming.  I did feel a WHOLE lot better after seeing Dr.B (surgeon) today and talking to her about it.  She is going to change out his device tomorrow to one similar and see if there is a difference.  We'll also do a contrast study (dye in the tube) to see if we can see any 'issues'.

It was a disappointing day in the sense that we had to miss out on our seating appointment for his wheel chair fitting.  He's got this awesome, very expensive wheel chair downstairs and we can't have it until he gets fitted for it.  They said no to having him done today something about him having three viruses...I guess that makes sense!

The nice thing is though?  I'm sitting here in the dark, listening to our friend (and amazing pianist/composer) Danny Wright's lullaby cd and listening to him play quietly in his crib.  I'm relaxed and happy whenever this little bum is near (and he's not stressing me out!).  It is always a good way to end a rotten-ish day.

A huge thank you for Kelly for rescuing me, the damsel in distress this morning (after my 9 yr old told her Mom had crashed the car). To Sumyu and Rachel for making me the most wonderful hospital snacks that fit with my eating routine (gotta get fit by 40 after all) and for Rachel as well for taking and feeding my big monsters yesterday (again!). The photos are also compliments of Justine! :)

At the end of the day, even a rotten one, we are blessed.

From Our Home (Unit 2) To Yours...

Monday, 17 March 2014

More Sun Then Rain

Somebody has found his sillies again...any guesses who? 

B's little body is still very much exhausted but he's finding little bursts of energy which are encouraging.  He's also gotten his 'flirt' back on with all the 'girlfriends' so life isn't too rough.

His lungs are still audibly wheezy and such but the RT said that internally they are certainly sounding better.  They weaned his oxygen down to 2 litres today without any incidence (and literally as I'm typing this he has his first desat to 85 while sleeping!!!).

Diaper snacks?!

They've upped his TPN amount and lowered his overall IV fluids to get him more nutrition.  I wasn't here today when the g-tube Nurse came by but they suggested using meplex around his stoma to stop the leakage but when I got here tonight his sleeper was soaked and the meplex was hanging off (doesn't do well when wet).  So the stoma is still leaking a good deal even though he's only getting the odd med/flush through it.  I'm not too sure why at this point.  The balloon seems intact and even had more fill in it then normal.  I'm curious if something is going on internally, some breakdown on the inside maybe.  I'm hoping surgery will be by tomorrow so that I can show them and pick their brains.  We can't get B back onto his g-tube feeds until it is resolved (or at least found a reason).  TPN is great in the meantime but it is only a short term solution when your are running it through a PIV.

It's nice to see our boy coming back again, even though he's sounding rough.  He is pulling himself up on his knees and certainly behaving like a 2 yr old when he's annoyed!  I did have to tell him he's not allowed to throw the projectiles (toys, syringes, etc) at the student nurses yet as they're not paid!

A large thank you to my friend Peter who came by to check on Mr.B and brought his Kalimba with him for B to enjoy.  B loves music so much and it nice to see him laying there enjoying Pete's playing.

No news from Cardiology today either, but that is a good thing it means they are not concerned.  They have pulled back a bit on the steroids that they are administering and it has seemingly made a difference.  His heart rate is still low but not scary low like it was yesterday.

Slowly but surely our Bug is working on beating his bugs!  The crummy part is that we've got a seating clinic appointment tomorrow for B's new wheelchair (yay!!!) but they won't let us go down to it (something about having three viruses and being contagious...).  I'm really hoping that they can come up and at least do the initial fit for us!  So exciting!

Hoping that tomorrow brings more sunshine as much as I like dancing in the rain, this Momma's tired out.

From Our Home (Unit 2) To Yours...