Friday, 30 May 2014

Life Just Gets Away

My Loves

It just happens, life gets away from me (like ALL the time).  I know that I've not blogged in a good while when I'm having trouble sleeping (the few hours that B lets me) at night.

There is always news and there is always something to share but what there isn't?  Time.  Time is a jewel in a house with two extraordinary kids, these three boys of mine.  This whole 'taking care of Momma' year is also meaning that time is getting used, ready for it?  Gasp!  Sleeping (sometimes)!  I'm also taking the time to go for walks with B in his skookum (I don't think I've ever needed to know how to spell that word!) new chair and enjoying life as we know it.

Life is crazy busy (as are most lives) and it's not any less stressful when B is at home (not in hospital) but it is just a different stress.  We saw the Nephrologist the other week (more on this later) and it was a new Dr that was unfamiliar with Mr.B.  He asked me if I found the beginning hard, like the first two years and was it getting easier?  Easier?  No, nope, nil, nada.  Different?  Yes.  I am certainly less (at least a little) concerned that he won't be breathing when I check on him but I'm no less concerned about the uncertainty of our future.  A future that no one can predict or even hypothesize about.  Am I more confident as B's primary Nurse/Dr/Momma?  I sure am, even changed out his g-tube to a new one the other day (Oh yeah baby!!) and THAT makes it easier.  Knowledge, that makes it easier.  So I guess that yes, (is it too late to change my answer?) life is somewhat 'easier' but it's a pretty relative 'easier'.

On the flip side?  There are lots of things that also are getting harder.  A 2 1/2 yr old that wants to communicate (more on that later too!  Did you want me to stop so you can get a snack??) and gets frustrated easily.  The world notices even more now that my son is 'different' (or funny-looking as one child so astutely put it to his horrified Mother).  We can't hide from the stares (if we are behind you and you are walking forwards and can still see us?  You're staring!).  Now don't get me wrong, I know B is certainly the cutest 2 yr old in the world but there are just days when I want the stares to go away for awhile.  There are 'good' days when they truly don't bug me and I find it funny (not so much ha ha) but then there are days when I just want to call people out on it.  Don't whisper behind your hand, just ask me dammit! 

Of course that then begs the question of 'what the heck do I tell people if/when they DO ask??' (assuming they have no medical background).  My go-to is generally he's a medically complex kiddo...ohhhhhhh says the stranger (like, oh, I have no idea what that means) and/or we get ohhhhhh (oh how I pity that poor Mom, her life must be so hard).  So some days I feel like I can't win and maybe I'm just not supposed to.  Education is hard, it's exhausting but if it's not me then who?  I guess I better be careful what I ask for!  Stares or the anticipated questions, which shall it be?

On the great note (of the stares) we finally got B's NEW CHAIR!  Hurray, yippie, zipideedodahday! (ok, I'll calm down a bit)  Mr.B's new wheelchair is the bomb!  It is a 'city select' stroller base with a wheelchair seat attached to it.  I had a Mom literally stop me in the parking garage at the hospital and ask me questions about it and take a picture!  I had a good laugh.  It's exciting, this technology of ours.  There are not many of these chairs in town yet (only ours and our buddy Sawyer's) because they are not at all government funded.  Michael thankfully has a great extended provider who paid for the whole chair (and trust me, it wasn't cheap).  Life is better for B being up higher and being able to see life around him while being fully supported.  Have you ever stopped to look at how many curbs and such in your community are not wheelchair friendly??  I didn't until now and there are not many that are!  I find it frustrating and I'm pushing him, I can't imagine for someone pushing themselves! (a down-the-road project I think!)

The big boys love to push B in his chair too and feel so proud when they get a chance to push him around.  Torin is tireless in pleasing B and one day after school he pushed B in his chair around the whole school field while the other 9 yr olds played.  The only downside to B's being out and about more is that he wants it more and more.  As soon as we stop walking (heaven forbid Mom should want to talk to someone else) I get immediate "Walk, More" signs (and screams but hey, we just ignore those!).

About those 'signs'...B's sign language has taken off in the past few weeks (could have something to do with him being on full feeds again for an extended period, just sayin').  Mr.B is confidently signing and using (correctly) at least 10 or so signs and even some sequentially (like walk, more).  It's so exciting to see him communicate and know that in his eyes I see the wheels turning constantly!  He is grabbing onto more and more around him and wanting to get some of it out!  We saw our SLP (speech) today and I asked her for suggestions (as we haven't really grown in the verbal sense for months).  She thought I should pull back on the signs and maybe concentrate more on the speech.  Um, no.  I know speech is important but to me communication is waaaay more important than any 'words' he can learn right now.  Some of you may not agree with me on this, and that's fine, but what I do know is that sign language was the first language for my other two kids and they turned out to be pretty damn fine!  If B's going to 'talk' he'll do it on his own time (not that I'm not working on it every hour of the day with him, I am) but I'm not cutting back on any of the signs in favour of the spoken word.  For anyone who's had a 2 yr old you know how much easier life is once they can communicate, even a little, of what they want!  Sometimes I just want/need a 'good on you Momma!', you know?  We are looking into the possibility of seeing an SLP over at the Hearing Clinic instead since they'd be a lot more in tune to our needs I think.

Speaking of therapy, I'm trying to decide what on earth to do for B in the fall.  It is so hard because I want him to be 'socialized' but on the flip side I need him to stay away from as many bugs as I'm not calling your kids germy, they are ALL germy!  We've not been out of hospital/Emerge and not sick for more then two blooming months in the past year.  The. Past. Year.  I was looking into PUF (Program Unit Funding) for the fall but because kids are only funded for a max of three years (until the age of six) and the thought of putting him in any kind of playschool programing freaks me out, I decided against it.  It doesn't mean that we won't keep up with swimming and doing therapy but we'll be doing it through a home based program instead with Specialized Services (through FSCD hopefully) in the afternoons.  Once B is stronger and able to fend off some of those said germys then we'll look at a more definitive program.  He is responding so well to the therapy tools that we use at home and is starting to do more and more each day!
Who loves to sort and organize?
Miracle Month at Costco! 
Thanks to Lana for making this amazing board of her daughter and some of her ACH friends!

Watching himself on the ACH video displayed

We've had a busy month worth of appointments and follow-ups for May.


We started the month off seeing our favourite Cardiologist, Dr.Fruitman for B's follow-up Echo/EKG etc.  It's nice now only needing to go every 6 mths for these tests but it's still stressful nonetheless because I never know if B's going to 'surprise' us with something.  We do know that he does still have an open PDA (leaky valve) and that it will most likely need a surgical closure in the future (but when in the future is the question).  I was feeling anxious going into the appointment because I was fearing the thought of another heart surgery.  It won't be a complex procedure (especially compared to many other heart babies we know) but they most likely will have to go in through the side of his chest again and do the repair up in Edmonton (due to his previous heart surgery and complexities).  Dr.Fruitman (as she's done for the past 2 1/2 yrs for me) put my mind at ease.  I love this woman!  It's not hard to trust this woman as she's the Cardiologist that was with me every day in hospital for those brutal 10 days until B was delivered and she has been with us through all of B's heart issues since.  Dr.Fruitman said that B's Corarctation (aorta repair at 22 days old) is looking good and still functioning well (it is a high risk of needing a second procedure as he grows) and that she is very happy that his SVT (rapid heart rate) is under control (for now).  As for the PDA it is still open (when babies are small they can tend to close up on their own with time which was the hope for B's) but that she's not overly concerned with it right now.  She said that studies are showing now that open PDA's aren't being automatically closed anymore and that we've got time (and lots more medical gobbly goop!).  I was happy to hear that she wanted to give him another 6mths before reviewing it again!  Yay no heart surgery this summer!  B was a trouper through both the Echo and EKG (neither of which he's fond of) and he was even helping the Ultrasound tech move the wand over his heart, smart boy!
NO FUN at Cardiology!!

The next day we went into our follow-up clinic with Pulmonary (lungs).  Since B's been having respiratory illnesses (seemingly back to back) since January we decided to change over his inhaled steroid to see if that would help.  (I guess since we've been to Emerge since then for a lung infection it's not made too much of a difference).  We did get to hang out with Dr.Anselmo that day which is always fun.  I like when we see Dr.Mark because he is the one that was treating B when he was teeny tiny and concerned that a tracheostomy was going to be our only option to get this kiddo to breathe on his own.  Dr.Mark is amazed and astounded at B and how far that this child has come.  It is always refreshing to see Dr's stunned by this child and all that he can accomplish.  I think that B challenging the Dr's keeps them on their toes and makes them better Dr's because of it.  If Mr.B can beat some odds then chances are others can too!
Our Lovely Miss S who's been donating with us since the beginning!

Blood Donor Superstars!!!

We had another successful Blood Drive that weekend, although lower than normal numbers for us, every time we do it we have given the ability to change lives.  Michael was sick for this one unfortunately and this Momma's iron was too low (habitually) but our SuperStar donors still persevered!  It's a small thing to do, donate blood but it's shows a huge commitment to us, to B and to changing the world when people come out to support us and donate themselves (when able).  I love nothing more then knowing that I have children that think donating blood is 'normal' and will be fantastic and regular donors themselves one day!  The staff at CBS are always happy to see B and all of the progress he's made over the past two years we've been donating.

It was a month of changes for us as well as we said Adios to Justine as she went off on an adventure of a lifetime and a grand Hullo to my Mom who came to stay in her absence.  Life is always so much easier with my Mother in my house as my house seemingly cleans itself.  I go to bed each night with a clean kitchen (I cook, she's beautiful) and kids with drawers full of clean, sorted laundry (no grabbing wrinkly pants out of the laundry bin when Grandma's on board!).  Throughout my Mom's stay she also managed to whip my yard into (a much better) shape and help me plan my 'garden' that is hopefully happening next week (with the arrival of the In-laws! Yay!).  What I love the most is when my Mom takes on momentous tasks at my house (like pulling out the fridge to wash the wall behind it!  Who does that??) and she grumbles that she'll not be doing this when she's 90 ya know!  I don't believe her though, not one bit.  It was sad to see her go after a month of having her here but I think that she'll be enjoying the peace and quiet of her apartment for just a little while now! (What I would like to know though is HOW was my Mom here for a full month and I don't have a SINGLE picture of her during this visit?!)
Reading with Ashley

Next in line was Nephrology (I did mention a snack was warranted?).  We had a brand new Neph Dr since B's regular Dr only works one day a week (which is when B seemingly gets sick).  He was a nice guy but it's draining to have anyone new on B's team.  I have to start at the beginning and work my way through B's 'significant' history which is very long and very convoluted.  I do however love having fresh ears hear the story and tell me their point of view on it all.  The good news from Neph is that the kidneys and all of their lovely cysts are seemingly stable right now.  The Dr did however note that B's potassium is low and his calcium is high on his latest blood work (from Thrombosis follow-up).  He was hypothesizing as to why but we didn't leave with any answers.  The other concerning thing that he told me is that B's got almost no Ferritin right now (can you say pale kid??).  Again, we don't know why his ferritin is low (it's 4, should be 30) but again, we left without an answer.  The Neph Dr was happy to leave us with follow-up with B's Pediatrician in regards to his blood levels.

Storytime, no need for a narrator apparently!

The big news of the month (well one of them anyhow) is that I spent an entire day in Edmonton and both B and I survived!  I had a Critical Care SCN meeting to attend and it was an all day meeting in Edmonton.  I wanted to go, I felt I should go but I was really quite anxious about it all.  I knew B would be okay but knowing that I'd be that far away didn't make it easy.  I was (mostly) reassured as our ol' pal Ashley (from this time last year) was free for the weeks while Justine was away to come and help out here.  So between Ashley and my Mom I knew B would be well cared for and loved, it was just the medical side.  Michael assured me (more than once) that he'd be in town and that he'd be able to be home in under a 1/2 hour if he was needed and that we DO have 911 in this city if all else failed (not that they'd know what to do with a child like B I'm afraid!).  I made my Mom and Ashley swear that if they did have to go to Emerge that they were to call me immediately and I would be able to talk to the medical staff as needed (I'm not tooo much of a control freak am I??).  I DID it, I got on that blooming plane and I flew up for my meeting and we all survived (hurrah!).  I have to give thanks to my friend Pete, who I went with as he kept my mind preoccupied for me.  Something wonderful did happen that day though as well (other than a great meeting).  We found ourselves done our meeting early (by 2 full hours) and we weren't due to fly home until 6pm.  Peter and I checked into the airport and went through security and simply on a whim (at Peter's fabulous suggestion) asked the Air Canada Employee if there was any room on her 4pm flight that was loading.  She did check and let us know that it was but it would be a $75 change fee for each of us.  We were both comfortable paying it if it meant going home early and I was talking excitedly about getting home to surprise the boys (who were not impressed with their Mother jet-setting off for the day).  The employee then realized that she couldn't seem to make it happen and so we just conceded that it was what it was.  The next thing I knew she was handing both of us boarding passes and telling us to hurry up so we didn't miss the plane (the 4 o'clock flight)!  Wow!  She told me to hurry up and go see my kids!  What a kind soul!  There was no charge to either of us and we gladly boarded the plan for home, reassured that there is in fact great kindness in this world!

All three boys (myself included) thoroughly enjoyed the (4 day long) May long weekend and we're all getting ready for summer to arrive I think.  B loves nothing more then having his brothers at home for his beck and call and for his grand amusement!
Who us?!
We even managed to find some time to sneak B in for another haircut (his third) which thankfully wasn't as nearly as traumatic as the previous two!  He was still seriously not happy with the whole thing but hey, it's a step in the right direction.

Summer is rapidly approaching and we have high hopes to travel West again this summer.  Torin has it all mapped out for me as to where we should be going so I'm trying to make most of his dreams happen.  We will have to avoid crossing over the boarder into the US again this summer though as B's health is just still to precarious and unpredictable (and I don't know if I could get insurance to cover him).  Torin is disappointed as that is a big part of the trip that he loves (Auntie Terri and Uncle John and their rotten children are a blast, I can contest to that!).  I am hoping that Mr.B will love the trip as much as he did or even more than last years trip!  We are really hoping to get to see the family/friends that haven't yet met him but I also know that I need to be realistic and the trip will all go according to B's needs and schedule.  So if you get a last minute phone call from me don't be surprised! :)
Chillin' in Emerge BEFORE the drugs hit...

We did have to make a wonderful (not) trip into Emerge (again) on Friday due to B catching (yet another blooming) respiratory infection.  I tried to stay away, I tried!!  Have you ever wondered why nothing ever happens in Heathcare on a Monday?  Who gets sick on a Monday?? No one, I swear!  For B it is almost always seemingly on a Friday (usually when people aren't working).  We did have the wonderful Andrea (Homecare Nurse) come by and see us on Friday afternoon with the hopes of her telling me that what I was hearing in his lungs was just in my head.  No such luck.  She suggested that with his work of breathing, combined with the fact that the 5 puffs of ventolin every hour weren't doing anything to help, that we needed to go in.  Damn.  Off we went to Emerge but I was at least hopeful that they'd give me a round of Dex (steroids) and send us home for me to treat him there. 

We did get taken back right away (which is really nice but never good).  B was none too impressed with me for the visit that's for sure.  Long story short (as it's a 7 hr story if I go through it all) B's lungs look no worse then they did when he was so very ill in March.  The not so good part of that is that they don't look any better either.  He's got so much 'damage' from the RSV, Adeno and Rhino viruses that the lungs haven't even (noticeably) begun to heal.  So the question is whether or not this is still a lingering 'flare up' of the illnesses or if it was in fact a new infection is up for debate (especially since we were in Emerge for this exact reason a month ago).  We did however get our three days of Dex and got sent on our way.

The next morning (I wish I'd video taped it) B was still as high as a blooming kite on all of the 'asthma' meds they'd given him (27 puffs total in ONE hour).  It took him almost until noon that day to 'come down' from it all...ugh.  But come down he did and he even felt good enough to attend the big bash for our friend Lincoln's Birthday/Fundraiser for ACH.  Can I just say that my friend Laine Kitt (and her hubby Adam Gill) put on the most wonderful event for the party and also managed to raise over $18,000 dollars to go to the ACH Foundation???  How awesome is that?!
One cool dude!

With May coming rapidly to a close and June starting up we are spending as much time as possible outside with Braeden.  I can't even begin to tell you how much this child loves nature and being in the sunshine.  We try to get him out for at least one long walk a day when we're able and to put him on a blanket on the lawn (he hates grass) so that he can explore.  I'm bursting with excitement to see him go this summer, we've got big plans!  Summer can't come fast enough if you ask me (and some teachers I know!!).

From Our Home To Yours...