The Truth, The Whole Truth, And Nothing But

I know that I am long over due for a post when I am laying in my bed awake at night unable to sleep due to the never ending thoughts in my head.  It's been a few weeks and might be the longest I've gone in the past year without writing.  It's not that it's not been an amazing few weeks, it certainly has, good and not-so-good but I've just not had 'silence' in my life for awhile to just sit and write.  I am one of those people who views writing as I do reading, if I can't sit and read/write in one sitting then what's the point?  It drives Mike crazy to no end when I will read all night just to finish a book when he is one that enjoys his books for days or sometimes weeks.  Can't do it, it's not in me.  I can take more than one day to read a book (I certainly don't have much choice these days if I actually get around to picking something to read) but it is a struggle to put it down!  Of course when I don't blog for two weeks, finding the time to simply write about that much info isn't a short jaunt down the blogger's lane, it's gonna take awhile.  Like anything in life, the more you procrastinate the longer it takes to accomplish, you'd think a master procrastinator like me would have figured that one out in the past 38 yrs...maybe I'll figure it out later!  Today is the first day that I've been home alone with B for more than a half hour here or there so I thought I would write as I listen to his steady breathing through the monitor.  He's been asleep now for more than an hour (yep, I procrastinated on FB first) so I probably won't get this all done in one go but I'll certainly try!

It has been an incredible two weeks and there is a lot of things to share:

FIRST and most importantly, our Sweet Boy is ONE!  I can't tell you the emotions that flood through me when I think that we/he made it to one year.  It has been the fastest year in my life and yet the longest.  I've had more growth as a Mom and a human being in the past year than I did in my first 36 years.  I've never experienced many of the emotions or felt others so profoundly as I have this year.  My three boys are the centre of my life and I am so very proud and fortunate that they've chosen me for their Mom.  They fill me with a feeling of wonderment everyday.  Braeden Joseph came into our lives with a struggle and still continues to do so but he's done it with more grace, happiness and peace that I could only dream to attain.  This child has taught me so much more than I could have hoped and I still learn from him daily.  I've been so content as a woman/grown-up/person since having my kids, it really has fulfilled something in me that I never knew I wanted filled (I wasn't one of those little girls that dreamt of the big wedding and white picket fence) and yet Braeden has brought a whole new dimension to Motherhood that I never knew existed.  Mr.B has ensconced in me a feeling of joy, a happiness and love that overcomes me at times.  He has brought so much love and happiness to our lives and he is our greatest teacher of patience and forgiveness.  He has also shown me the greatest pain and fear I've ever known and I've come to realize that I've got to meet it head on and just carry it with me but not let it consume me.  It is ironic how pain, fear, joy and love can be so closely linked.  I am among a small (thankfully) group of Mom's that are aware that their precious child is only with them for as long as they give us and for that I am thankful.  Thankful that through loving Mr.B with all my heart each and every day I live life day to day, hour to hour knowing that each moment and that life itself is so very precious.

People are shocked into silence when I mention that I am aware that B is only here for as long as we get him.  Why is it that people have such a hard time excepting that a child can die?  I have found it interesting how easy it is for people to dismiss the notion that a child may not live a long life, people don't seem to want to admit that it can happen to someone they know and therefore it could happen to them.  I remember clearly the conversation that I had with Kathy (wonderful G-tube nurse) when she was trying to bring up the idea of the Palliative Respite for B.  She was trying to feel out how I felt about Braeden's life and when I was blunt with her about how Michael and I are aware that this sweet child is ours for as long as he'll stay for she was visibly relieved.  It must be so difficult for the health professionals to have those conversations when the future is so unclear for a child. 

Please don't in anyway think that I accept the fact that Braeden may die before me, I have the highest of hopes, dreams and wishes for his future but I have also found the need to be realistic and tell people that we really don't know.  Not a single thing with Braeden is black and white, he is all shades of grey (many more than 50 I'm sure of it), and he has complications with every single organ system in his little body.  He is a very complex medical case and no one can even begin to imagine what our future holds really.  It was the common cold bug that had him in ICU on a ventilator this last time, certainly not a typical reaction to a cold.  All of that aside, he is the strongest, most determined little being on this earth!  The fact that he has defied death many times now is just gobsmacking.  My sisters told me that I need to let people know how bad thing are/were when they are/were bad.  I guess in my heart I knew Braeden has clung to life more than once but I didn't say it in that many words.  I guess that is why I am caught off guard when people in our community are surprised when I explain that he's back in hospital or that he's not doing well.  I think, how is it that they are surprised?  The reality is that not many people have the full story of B's life (unless you've read this from the beginning or really know us well) and most people have the belief that a child will simply 'get better'.  I love that we, as humans, want the best for children and want them to have a long life but it is also very difficult for me to convey to people how different Braeden is.  Sometimes having a diagnosis might make life easier but in reality, B isn't going to fit into a box and if he were diagnosed with a 'syndrome' chances are it will be so rare that people won't have heard about it anyhow (I still have people ask me what Autism is).  Braeden is just that Braeden, or Mr.B or simply B.  He is our life, our joy, our peace, our happiness and our blessing and because of him I want to strive to be better, try to be stronger and to live life in each moment.

We had a week long celebration for Mr.B's big birthday!  On his actual birthday we had a quiet family dinner at home with just the five of us and my Mom (who was visiting from Victoria).  I made a chocolate cake and we had ice cream but being as B doesn't take any food by mouth yet (he has an extreme oral aversion), I couldn't let him just go for it but I did mush up a wee bit of cake and ice cream on his tray.  He was not particularly impressed with any of it even when I did sneak some icing into his mouth.  Ah well!  We now have his 'new' high chair complete from the seating clinic for him (custom fit) and we are working on oral tastes now so the hope is by his 'age adjusted' year (which is also my birthday) we'll do another cake.

 

Daddy Donor!

 We decided to celebrate B's year with another Blood Drive and Canadian Blood Services was kind enough (thank you Kirsten!) to throw B his own little birthday party.  CBC did come out as well and did a short piece on B for the late night news!  Such a famous kiddo!  We shared our cake with anyone donating that day and shared Braeden's story.  We had a few tears shed and the donors who didn't know us were certainly touched when I explained that because of people like them, this child lives.  I was told by one of the volunteers that she had donors thank her for having such a 'happy' environment that day.  I'm certainly glad we could help! We are so thankful to CBS for all the support that they've given us over the year in our drive to give back by running the donor clinics.  We (Michael and I) plan on continuing to donate every 56 days and are always on the hunt for new donors.  If you ever want to join us, please just let me know and I'll gpass on the details.



Chatting with CBC

 

Birthday Cake from CBS

 Braeden's birthday weekend was made even more special by the surprise arrival of all of his maternal Aunties!  As my oh-so-clever Father-in-law (don't tell him I said that), said, we had an Aunt Infestation!  All three of my sisters arrived (with my nephew and niece) amidst our biggest snow fall of the season thus far (a foot in 24 hrs).  They were scheduled to arrive at 8pm and in reality (this must mean they love me), they got to our door at 2:30am instead.  Now for those of you that know me, you know how important my sisters are to me.  These three women have inspired me, taught me and helped mold me to the person I am today.  They are my support, my guidance, my voice of reason (especially when I don't want to hear it!), and most of all they are pure love and joy to have.  We are all as different as we are similar but we have one thing in common, we are each others best friends and a constant supply of love and support.  To have all of us in one city at the same time is a rarity these days (no thanks to the sister that moved to Calgary, me) so it is a cherished event when it happens.  It was even more wonderful due to the fact that my sister Marisa and Niece Acadia had not met B yet.  It was a full house without a doubt and one bathroom among 11 of us was a bit of a stretch but we made do.  Just think of the wonderful estrogen that my lovely husband had to endure!  I know this journey has been especially tough on them as well as they are my 'older' sisters who have made it their jobs to care for me, the youngest.  It's been incredibly difficult for me to ask for help this past year and it's been hard for them because they've not known how to help (not for lack of trying!).  I practiced the art of 'letting go' of my control issues while they were here, which is especially hard in your own house!  What we did have is the perfect party atmosphere with a stuffed house!



Nurse Smooches for B!



We welcomed friends and family to an Open House on the Sunday for a celebration of Mr.B and had a great turn-out.  Four of B's Nurses were able to come from Unit 2 and B loved being fawned over!  Thank you to those of you that joined us (and I know many more of you wished you were with us) and thank you for all the lovely gifts (that were not necessary but wonderfully kind).   And of course to my work 'crew', my Mom and Sisters (that had to put up with me!).

It was a very sad day on Monday when I had to say good-bye to the Sisters (Niece and Nephew) and I was pretty much a wreck driving home from the airport.  I miss these women more than I can convey and it was a weekend of rejuvenation for me!  One thing that we did all share though was germs!  Apparently when you mix a BC cold with an AB flu you get everyone involved sick! 



B's new NoseScruncher Face!



As I mentioned earlier we finally got into the seating clinic last week and got B's highchair custom fitted for him so he now really is a 'big' boy.  He's enjoying being up with us at dinner time and is learning to finger paint with strained prunes and applesauce (it's amazing how far it can travel!).  I've got my work cut out for me with trying to work around his oral aversion so that he can get comfortable swallowing some thickened liquids.  I am hoping that I'll look back on this time and think that it wasn't so hard! 

I got to meet with one of the Pediatricians for the Rotary Flames House and we've booked our first over night trip to stay with B for the end of the month.  Our intake was very easy and reassuring as well as impressive.  It is an incredible House and I am looking forward to getting to know the staff better.  I am extremely thankful for the opportunity to utilize their Respite if we can (and if I can get over the guilt of it) and I am looking forward to meeting with other families that have children with life-limiting illnesses.  They offer monthly group activities for the whole family so I am thrilled that the boys will all be involved.  I haven't told the big boys about the night away yet but I know that they will be excited.  It is expected that you stay with your child for at least the first time so I am anxious but excited as well.

  

I had an eye-opening appointment with the Stroke Clinic last week.  Dr. Mineko was the Neurologist that diagnosed Braeden's strokes back in the NICU and was very happy to see him looking so great (and so much less swollen) at a year old.  He's also been seizure-free for 10mths now so that is good news.  She reminded me that he's at a higher risk for seizures still due to the brain injury as well as the fact that there is a genetic component (syndrome).  I had blocked out of my mind that B's brain is also small in size and irregular.  He has all the correct parts, it is just irregular.  Funny how we can block things of such consequence out!  I guess part of the reason I blocked it out is because I don't want to ever think in limitations with this kid, I want to raise him as I did his brothers and stimulate the heck outta that little brain!  I asked Dr.M if he would ever present with a 'normal' sized brain and she said no, he has a 'Braeden Brain'. What this child has been through really makes you stop and think.

We got to be a part of the "World Premature Day" on Saturday at Foothills General Hospital where they held a 'Graduates' Tea for last years grads.  It was a really nice gesture, we unfortunately didn't get there till the end but still got to see some familiar faces and Mr.B got some snuggles.

Another sad thing was having to put my Mom on a plane after she came for an extended visit.  My workload has at least doubled again and to say it is hard to get back into a routine alone is a gross understatement. She was annoyed that I wasn't letting her do things but in reality she always does so much more than I could think to ask.  I certainly miss my kitchen elf that cleans the kitchen while I get the boys all into bed!  There are times when living a province away from our parents and siblings really sucks and the reality hits that I need a wife!

So the crummy part is that B is now struggling with his oxygen as he is also battling a virus of some sort.  We spent Monday at Emerge because Mr.B's just been 'off' for the past week.  He is fussy and not sleeping well at all.  I thought initially it was another UTI but that is somewhat normal but he does have some spots on both lungs which indicate infection.  The fact is that he is already on two different types of antibiotics one of which I was hoping would cover him off for the bronchitis that his brothers had including the ear infections that I had.  There is nothing to protect him from virus's though, we just get to work through those like everyone else at this time of year.  I am trying my darnedest to weather this one at home but his last hospital stay (when he ended up on the vent in the ICU due to the cold virus), is still very fresh in my mind.  I am watching him like a hawk and not sleeping myself as he wakes in the night screaming frequently.  He hasn't gotten any worse in the past 24 hrs so fingers crossed he is getting stronger.  We've had to triple his oxygen intake and lung meds and that seems to help somewhat.  It's going to be a long cold/flu season that's for sure!  I am still considering a bubble for him...

(and it took me only 7 hours to complete this post!)





My Life's Work!



Eyes Wide Open

Sometimes in life I love it when a Serendipitous Moment sneaks up on you and opens your eyes even wider.  I've had a LOT of these moments since B was born (actually starting near the end of my pregnancy, and by moments I mostly mean people who have entered my life in this journey that I have been SO blessed to meet) but today I was in a baking frenzy for Mr.B's Birthday Open House (Sun, Nov. 11th) and put on an old album that is one of my all time favourites, Natalie Merchant's "Tiger Lily" (it always reminds me of my friend Jen W who introduced me to the album and who I only get to see every few years).  I was happily in my baking mode when the song "Wonder" came on.  I was singing along to it as it is one of my favourites (who am I kidding I sing to the whole album!) and I burst into tears.  This song has always struck a chord with me and today I realized why, it was like it was written for a little soul like B...Mr.B the "Wonder" Boy (or girl in her song)! 

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

It's been an emotional few days, counting down to Mr.B's FIRST BIRTHDAY (thought I'd just yell it again!!).  He's been home now since Weds but it's been a roller coaster because he started to cough not even 24 hrs after being home.  I am keeping a very close eye on him (ie: no sleep) to make sure it isn't progressing into anything else.  He's 'off' but not getting worse so I am just biding our time at home and crossing and re-crossing my fingers for a healthy week ahead.  I am also pretty sure he is finally cutting his first tooth (or who knows, he could cut 6 at once!) as he is stuffing anything and everything in his mouth.  For a kid with a strong oral aversion this is quite the feat to see!  The day we came home (Weds) B slept a whole 10 mins for the first 12 hrs he was SO excited to be home and be with his brothers.  It brings such tears to my eyes to see my children under one roof together and enjoying each other to the utmost.  They all have such love for one another, they are all such amazing and loving little souls.  I couldn't count how many times Ry said to me today, "it's just too much Mom, he's just toooo cute!" and "we have the sweetest baby don't we Mom?", not to mention fussy over who's turn it was to hold B on his lap.

I've also spent a good deal of time in the past few days reminiscing and re-living parts of the past year and it struck me the other day what it is about B that draws people to him.  Mr.B has his eyes wide open to his soul for anyone he meets, he will let anyone in and love anyone who happens his way.  People that get a chance to meet him don't easily forget him (I am told).  I went into the NICU after we were discharged last week to leave a note for the Staff to let them know about B's Open House and the Dr that happened to be on was Dr.Amin, the Neonatologist that saved B's life the first time.  Dr.Amin was so pleased to see him almost a year later and you could see that he was moved as B is one case that a lot of Dr's will remember I'm sure.  Going back into the NICU almost a year later feels so good, freeing in many ways (although it is firmly attached to the PICU so it's not like I've not spent some time close by!). 

Another interesting moment was at the Pediatrician's office the other day, there were two other Mom's there in the waiting room when I got there and one of them had an absolute peanut.  She was holding her 5lb baby girl over her heart and it took my breath away that B was smaller than that when he was born (didn't seem possible) and to see him now at a small but healthy 17 lbs.  The other Mom had a little girl as well that was just a bit older than B, walking everywhere.  Through our conversation (as only Mom's in a room will do I think) we realized that we all had our babies at 32 weeks and here we all were at different stages with different medical needs yet joined in this journey.  The Mom of the peanut was fragile and shaken still so new in her journey and she had tears in her eyes as she left, thanking us for sharing with her.  Now we didn't go into any major stories, it was just enough to see two other 32 weekers there and bigger, healthier (little ironic smile) and happy.  Right place, right time?  It isn't the first time I've met someone in that office at the same time as me that we've found a touch of kinship through our hardship, in fact Dr.Cassie (the wonderful) has even introduced me to other Mom's in her waiting room saying we should talk, that I could share and help her in her journey too.  Of course this was the same Paediatrician that when we saw her a week after T had been diagnosed with Autism sat with an open mouth as I told her what I had done in the week since seeing her.  I asked her if I was missing something (mid speech of telling her what I had researched and set up for T) and she just said she was wondering when I was going to be in denial!  Denial?  Everything I had read about Autism in that week had told me we needed early intervention, I had no time for denial!!!  I guess that conversation gave her the insight that I will move mountains for my children if need be. (I think I am getting off topic...)

We did get to have our interview with the Rotary Flames House for the Palliative Respite Care last week.  My Mom joined me for the interview and we were both impressed and moved.  It is a fantastic place, set up very much like Ronald MacDonald House but with the 'medical' side to it.  For those of you that have followed from the beginning you'll remember what an impression the RMH made on my whole family (T still asks when we get to go back).  I got a great vibe from the moment we walked in till the moment we left.  It is funny now when I think back to a few months ago when I all but feared that house as I drove by it every day going to see B.  I was terrified to think that we might have to be inside it one day and now I can't wait!  It is encouraged that you stay at least for the first night with your child when they are first attending and it is even more encouraged that we all go.  I love that and I love that the boys will know the House, the Staff and know where B is if and when we need to utilize the services.  As terrifying as this road is, there really are many wonderful side effects to it all.

What I've also discovered is that I still have so many people to properly thank and yet I hope that you all know who you are and how in debt I am to you.  I had the best of intentions of sending thank you cards and such to the Nurses from the Foothills Maternity (4th and 5th floor), the PostPartum, FMH NICU, Stollery NICU, ACH NICU, PICU, Unit 2 etc...it just never happened.  Please know for those of you keeping with the story that you touched my/our lives in ways that saying 'thank you' doesn't even cut it.  I know that a proper thank you would have gone a long way as you are never thanked enough for all that you do every day, for that I am sorry!  The same goes to all of you that have gifted us with your time, your shoulder, your patience and your presence (and presents)!  Those thank you cards may never get sent, but please know that doesn't mean I don't appreciate every one of you and everything you've done for us.

Many days and for so many reasons, my children leave me inspired, invigorated and encouraged...gotta go find my next mountain (before Braeden hand delivers it)!


Please join us in Celebration of B's First Year on Saturday at Canadian Blood Services (737-13th Ave) from 9-11am for our next Blood Drive AND on Sunday, Nov 11th at our house for a casual Open House from 1pm-5pm.  (Please send me an email for the address if you don't already have it)

Happy Anniversary??

Oct 26th marked the one year anniversary of when Mr.B was diagnosed with Hydrops and when I ended up in hospital that afternoon.  I can't believe it has been a year, it is shocking to me that it has only been a year in many regards and yet it has been the longest year of my life.

It is sad that as I am writing this that B is still in hospital and that we've really only had him home for such a short amount of time in the past year.  The good news is that Mr.B should be home this week (fingers crossed and re-crossed), only five weeks after going in this time.  Five weeks! Not what I was imagining as we were driving him into Emerge this past time.  Of course I also had no idea he'd be clinging to life once again on the verge of being intubated!

The life with B, or rather the "Life of B" is what my next chapter should be called!

As I mentioned, things are looking up for Mr.B, he is stronger, gaining weight (after losing so much in ICU that put him back to 'scrawny') and he is full of his usual vim and vigour.  He is down to just his O2 tubing and has his little cheeks and nose back to usual again, no more (extra) pesky tubes.  We are just still sorting out the kinks of his feeding and I'm and hoping that he's not being pushed too quickly.  They were taking it slow (as per my request) but the weekend Dr. (who doesn't know B at all) pushed his feed up almost full ounce per feed today.  The awesome thing?  His Nurse called me to see what I wanted to do!  Did I mention how much I adore those women on Unit 2??  I did allow the push, more or less to do our trial and error under the hospital care, not at home.  He is seemingly tolerating it so far which is great for him, the little trouper that he is.  My plan is to get him up and moving as much as possible in the next few days to see if he is 'truly' tolerating his feeds when he isn't laying in a hospital bed 20 out of 24 hrs a day.  He is also in need of a g-tube replacement by a surgeon tomorrow as the valve on his has shot.  I tried to take the feeding tube out of it last night to clean it and had geyser of fluid shoot up instead!  Thankfully it is a short procedure and hopefully (fingers crossed again) that Dr.Brindle is on service and will once again come to our rescue.

I cannot convey how very blessed I am with my children or how much love they all have for one another!  T and Ry have always been extremely close (they still sit practically on top of one another on the couch even though we have two couches) so I wasn't sure where B would fit in.  There was never a worry to be had, all three boys think the sun rises and set with the other two!  The big boys and I were up for the afternoon today and we did put B into his carseat/stroller combo and walked him around the whole hospital (those of you that know T's love for elevators will understand).  Mr.B was SO happy to be out and about and was certainly less than pleases when I took him back and put him back into the hospital crib. He was thinking I was springing him I'm sure!

I'm not quite sure what the Nurses will do when we do come home though, they will certainly miss their smiles and love that he so happily offers to each of them!  Through it all, this child smiles and laughs.  He is an inspiration and a blessing to us all!  Braeden knows that life is simply for living and loving, that is it.

So for the past year people have been telling me to ask for help. Here it is, I need a 'WebMaster' to help me form a Blood Donor webpage for people to sign up to that have donated in Mr.B's honour. I can't think of a better way to track them and it would give me a chance to thank everyone that has. We've had people coast to coast donate as well as some around the world. So, if any of you, or someone you know has the time and the gift of computers please send me a mssg. Even more so if someone want to 'donate' their time to this, even better! :)  I have a pretty good idea in my head of what I want, I just don't have the skill set to put it to computer!

We are also about to come upon a very important day in 10 days, Mr.B will be turning 1!!!  All of the times we had to live life hour to hour I wasn't sure that this day would even come.  In celebration we will be holding a Blood Drive on November 10th at 9 am with Canadian Blood Services (Every two Canadians will either require blood or know someone who does/will).  Blood Services has asked if they can throw a small Birthday party for B as well and we are thrilled!  Please come out and join the celebration of giving the gift of life!  If you are looking to donate (we have a few spots left to fill) then please message me.  The plan is to also have an Open House on the Sunday (11th, after we remember our valued Veterans of course!!) but I've not gotten around to getting all of the details of that in place yet, just reserve it for us!

An EKG for Rylan

Well B is back to his charming self!  Any time I call into his nurses for an update I generally get a version of, "Oh my goodness, he is just SO lovely!".  It is great being back on Unit 2 (I'm sure I've mentioned that) and it is nice to be back amongst friends.  The good news is that Mr.SUPER B is now only on  a 1/2 litre of oxygen and has been moved out of the Respiratory wing into Green wing.  Now, I'm not a huge fan of the green wing being as it is kinda off on it's own BUT it is for the 'healthiest' kiddos AND is the hallway ALL the Nurses go down to get to their break room so he gets lots and lots of loving.

I'm of course back at the crushing guilt stage of not being there with him 24/7 but that is just part of hospital living.  After spending a min of 12 hrs a day in ICU with him I need to do things like, I don't know, buy groceries and such (not to mention the other boys need me a few hours a day, can you believe it? :).  It's been fantastic timing on B's behalf to plan this little trip while my Mom is here but also painful that I cannot get all the house cleaning/sorting and such that I had planned while she is here.  Frustrating but life as I know it.

Cardiology has been in to see him and has studied his EKG strips and they are comfortable with the arrhythmia as it is right now, not a major electrical interruption.  The great news is that it is seemingly getting better as he is getting stronger.  The funny (not at all really) thing?  His big brother Rylan is now going into Cardiology for a consult in March (before anyone panics, he's fine).  Ry called me into the bathroom last week to tell me he had a pain and couldn't get up.  I asked if he just ate too much and when he straightened a bit he told me and pointed to his chest and said it felt like 'lightening' in his chest.  Got him up, got him onto his bed and got out the stethoscope...sure enough his heart rate was a bit irregular...time to panic.  Called Mike to make sure I wasn't overreacting (as he is my logical one) and he said to take him in.  Of course this was right before bedtime...So off to Emerge (B was still in ICU at this point) with Rylan with Torin getting instructions that he could stay up till 9pm (which placated him nicely).  I got to ER and the Nurses asked just how I figured out his heart rate was irregular to which my response was, "I have a son a history of SVT, with a Coarctaion and a resulting PDA"...enough said!  They did an EKG, to which it was all normal (the pain had long since stopped at home) and the ER Doc came in to talk to us and did a double take as she was the Dr that admitted B the week before.  I explained that yes, it was me with one of my OTHER children (lucky me) and she enquired to how B was and I explained he was on a vent in the ICU and she was so shocked.  I explained just how fast and how sick he got and she was SO relieved that she hadn't sent him home (not that she would have).  She explained (and I already knew) that there was only less than 1% chance that something really is wrong with Ry's heart but that she would put a requisition through for Cardio based on the fact that he's B's brother.  I requested the AMAZING Dr.Fruitman and on the top of the requisition the ER Dr wrote "Braeden Lousier-Hicks' Sibling!".  Just when you think life is exciting enough!!

Back to B,
Nephrology is happy to wait for now before continuing testing, why they are bothering to wait for possibly the NEXT UTI is beyond me.  And not to worry, when I see one of them I will most certainly ASK that question.

The biggest issue now (and ongoing since July) is Mr.B's intolerance of feed.  He has been just fine on the NJ feeding going straight into his intestine, no retching or bile back-up.  Once they introduced feed back into his G-Tube he was ok with the very small amounts (running less into the NJ while uping the amount running into the G) but once they got past where more was going into the G than the NJ he started backing up bile again into his G-Tube (meaning that damn pylorus, valve at the bottom of the stomach is open again).  They backed off a bit and are leaving him at the status quo for the weekend and will attempt furthering it on Monday after GI weighs in with their opinion.  I also found he was 'gassier' again and needed a vent yesterday.  It is all SO frustrating as there is NO physical explanation for it.  The intestinal tracing test they do with contrast through the stomach tube and then xray it while it follows the intestine down is all showing good timing so there is really no physical evidence/appearance to why it is happening.  Good thing it isn't up to me to figure out!!  I'm also SO thankful that Dr.V is willing to keep him in until it is sorted out and that Dr.McNeil is on rotation for the next two weeks for Purple Team (long term chronic care that B is a part of) as she knows B very well as she was his first Purple Dr. when he came up initially from the PICU.

Onwards we go, my mother is actually out planting tulip bulbs in my planter boxes as I watch the snow fall outside!  Winter is arriving whether we are ready for it or not as is Christmas (yes I said it) and of course only a few short weeks till B's FIRST BIRTHDAY!  A day we didn't think we would see on more than one occasion in the past year.  Hard to even process that I was hugely pregnant with our sweet B a year ago!  Not too surprising I guess that I've been dreaming of babies lately!  (I should follow that with LITERALLY been dreaming of babies, not "ooooh, I want another baby"...NOT now and NOT ever!!  Just sayin!!) ;)

Staying In For An Overhaul

The grandiose news is that we made it upstairs to Unit 2 yesterday AND Mr.B is off his highflow oxygen and onto only 2litres of regular flow.  He is getting stronger and coughing like mad trying to get all of the crud out of his lungs.  The most wonderful news though is that he's started 'smooching', making a kissing smack with his lips.  Oh my goodness did we laugh yesterday!  One of his favourite Nurses, Breanna, was in visiting with him and was making kissing noises to him and he mimicked her.  He's closed his mouth for me before but has never actually made the 'smooch' until now.  I'm sure we were heard throughout the who unit!  The news travels fast and he's had his usual number of visitors now with the expectation they were going to get the 'kisses' too.  Laughter really is the best medicine!

Now that the lungs are healing we are looking at the rest of his little body and get it sorted out before coming home.  I had a long talk with Dr.Vomiero about the 'plan' and her idea (which I am fully on board with) is to keep him in this time till everything is sorted.   Nephrology wants a much closer look at the cysts in his kidneys, GI needs to get a plan in place for his intestinal upset and feeding, get him off the NJ tube and we need to work out if the g-tube is working efficiently or not.  There is no point, in my mind, to let him home now when there are still so many issues/kinks to work out.  In my mind I don't want to bring him home until he can have a full feed and be moved around without a major retching episode (if that is in fact possible).  So sad with the idea he won't be home for a bit but happy that Dr.V and I am on the exact same page (she has been the Dr to treat him the most on Unit 2 and is really the one who understands just how 'quirky' he is).

The other thing to sort out is his heart.  He is still having an arrhythmia when he falls into sleep and his heart rate is now falling into the mid 60's when he is sleeping (it used to be 105 was low for him).  We tried to get an EKG on him today but unless he's asleep there isn't much to see.  The plan is to catch him right before sleep tonight and get the leads on to get a reading for when he is in fact asleep.  I told Dr.Vomiero about my cardiac concerns right away when we came upstairs and she didn't brush it off like they had in the PICU (which I knew she wouldn't) AND she consulted Cardiology immediately...what a concept!  Thank you Dr.V!  I am certainly happy to be back 'home' on Unit 2!  Cardiology has lowered his heart med (for SVT control) and it could be just as simple as he's outgrown his SVT's and therefore doesn't need it...or not, being Braeden. 

Of course my biggest goal now is to fatten up my little bug as he is looking so little to me again and when I snuggled him today (finally a real snuggle after getting off the vent and the awkward holds that go with that), he was just so small on my chest.  Does whipped cream count as thickened food that he's been cleared for tastes?

Heart, Lungs and Superbugs

To say this has been a hard week would certainly be an understatement but what it also has been in an eye opener in many ways.  First off I knew that our lives were going to be spent in and out of hospital with B but never in my mind did I let myself believe that we could be going to a critical condition again quite so soon.  Secondly, I am now terrified, TERRIFIED of a repeat of this when we had no real symptoms to follow before hand.  Thirdly, I need to somehow learn to 'teach' the Drs, Nurses, RTs and fellow staff in the ICU about treating complex kids like Braeden.  That sounds completely pompass on my part, I know, but the staff in the ICU are a trauma team, treat the here and now which is good, it is their job.  But I would like to somehow learn to get through to them when treating chronic kids like Mr.B that they truly need to take more of a holistic approach to treatment.  Maybe that's not possible, I don't know.  Treating the 'here and now' is good as long as you understand how we got to the 'here and now' in the first place.

The most brilliant thing that one of his Nurses said to me is that she had just gotten back from her first Mat leave and that all of a sudden, 'difficult parents' were actually just being PARENTS that were scared and concerned for their child.  Imagine that!  Now again, I don't think you need to be a parent yourself to be able to understand or have a good concept of what a parent is going through as we've had many, many caregivers that are not parents but they 'get it'.  It is interesting this trip down here because I feel as though I am one of the 'difficult' parents because I question things.  Funny thing is though I have questioned things since the beginning.  I clearly remember speaking up during rounds when B was just a few days old in Foothills and the the look on the Dr's face as he turned to look at his staff then at me that he was SHOCKED I would want to weigh in on an opinion.  I am B's voice and I will be long after he can speak for himself, it's my job and I take it very seriously.

Braeden's heart rate has been irregular at periods over the past few days (mostly while in deep sleep) and the Nurses's and Dr's are not impressed when I repeatedly point it out as they have already told me it is 'normal'.  It is funny because yesterday I told his Nurse while it might be 'normal', it's not Braeden's 'normal' to which she replied that 'it's not like he's always on a monitor'.  She's right, he's certainly not anymore but lady, I did watch him on a monitor for 7 1/2 months straight...I've got some experience here.  I'm trying, trying to be patient.  I know they are here to help but nothing annoys me more than when the Dr's or the NP comes into his room to discuss something (like the heartbeat) they address the Nurse, not myself and speak in 'Dr talk' not thinking I understand.  I may not be a Cardiologist but I do know what a P wave, T wave and QRS are thanks!  I finally got so frustrated yesterday after being placated again after watching him miss beats that I marched upstairs to Dr.Fruitman's office to see if she was there.  She was not unfortunately (I knew it was a long shot) but I did leave a message for her to come see us down in ICU if/when she could get a chance.  If Dr.F tells me it is nothing, then it is nothing, end of story.  I asked the NP at what point do they get Cardio involved and she replied if and when it gets to the point of having to do an EKG THEN after that they would consult with them...that so doesn't fly with me.  I know the Intensivetisits have an incredible amount of skill and understanding but they do not know Braeden nor have they been with him since day one (or in Dr.F case in utero).

I was so frustrated with not being listened to again the other day by his Nurse that he had 4 days in a row that I (for the first time ever) was going to request another Nurse for the day.  I didn't think it would be a big deal if he could have actually moved his arms a bit rather than having them tied immobile at his sides (how long would any adult put up with that?).  I told her it was unnecessarily unkind to not be able to move and she said it would be more unkind if she had to restrain him and place another NJ in.  It is true, but I didn't ask for him to be free, just to be able to move 2 inches if he so wanted.  I thought long and hard about it in my shower that morning and thought, no I'm going to take it one step further so I did something crazy.  I bought her chocolate and thanked her for doing her job.  I realized that asking for another Nurse was going to set a precedent on the floor for myself (or worse Braeden) that I didn't want, so I treated her with extra kindness instead.  Amazingly (?) it worked.  She was SO touched and thankful for my thoughtfulness that I hope next time she has a parent question her or make a suggestion that maybe she'll remember that she is valued and appreciated but as a parent we would like the same in return.  I have to keep reminding myself that we are all humans in this and humans make mistakes, even medical ones.  Kind of like the mistake that B got IV for 14 hrs straight with no sugars in it, his sugar was 1.7 in the morning when it was realized...easily corrected (thank goodness) and no lasting issues (thank goodness)...forgiveness needs to be the key learning point here.

All of this being said when I made my thanks for Thanksgiving I left out the largest group of people (and now family) in our lives that I needed to thank (and am horrified for it).  The biggest thank you that I needed to give is to ALL of the staff here at ACH, from the (previous and current) Nurses to Drs to RT to Techs to Porters to Cleaning Staff and Clerks and Cafe Staff and so on.  Without you people coming to work each day Braeden would not be here.  It took my 6 yr old to point it out at the dinner table when he thanked all of the Nurses and Drs that have helped Braeden!  What a kid!

As is typical with Braeden we changed over so issues for others.  He had an issue with an overinflated lung on his right side that was crossing his mid line into the left side.  His left lung was very diminished and partially collapsed as a result and they were looking at a possible leak in the lung as they were trying to diagnose if there was 'air' in his chest cavity as a result from a puncture in the lung.  He's also been diagnosed with VRE which is an increasingly more common of the 'super bugs'.  The good thing is that I'm told it is 'the' superbug to have if you have to be stuck with one.  He is simply carrying it at this point, let's just leave it there!

The right lung is looking more 'normal' today and his left lung has started to reinflate to 'normal' size.  But the fabulous news of the day is that he is OFF his ventilator!!!

His face is pretty red and bruised up from the constant pressures from the masks but it is getting better hour to hour and he is SO happy and excited!  It was fantastic timing that when he came off Marc the Music Therapist (Specialist?) was walking by and came in to play guitar and sing for Mr.B.  Now B is a huge fan of Marc's anyhow, but today was just so special to watch.

Mr.B is still needing his ventolin every 2 hours and is working hard and wheezy but is (so far) maintaining his oxygen levels.  He's having his first nap now after coming off so now is the challenge, we'lls see if he can maintain his SATs while sleeping.

If we have a great next 24hrs we might just get out of the fishbowl of the PICU and back upstairs to sunshine and light!  Onwards and upwards, Mr.Amazing is at it again.

One Step Forward, Two Back

I've been sitting with the window open to start this post for the past three hours.  I am thinking that posting directly from Braeden's room isn't necessarily the best option when I'm in an agitated emotional state.  For the past 48 hrs B seems to make a step forward and then jumps back two more steps.  He has alert 'Mr.B' times then is lethargic and/or miserable.  They keep telling me this is normal, but they don't know Mr.B.

We do finally have a virus definition at least for the lungs, Rhinopharyngitis or as most of us call it, the Common Cold.  The Common Cold has knocked my son clear off his proverbial feet for the last 5 days now with no sign of letting up.  My best theory is that B was working on the UTI for some time and his immune system was shot because of it.  The craziest part of all of it was that he has NO symptoms.  He was seen by a Nurse, a Respiratory Therapist and a Physiotherapist only 10 hours before the retching started (which lead to the ER visit).  No fever, no acute pain, just a wee bit of fussiness.  How is one supposed to know with this kid?  I like to think that I am well intune with B, that I know him and his signs inside and out but this one caught me completely off guard.

More than a few times he's perked right up and we've thought, "okay, rounding the corner now" only to have him slide backwards a short time later.  I'm so concerned, stressed and frustrated with all he's had to endure over the past 5 days.  It's not the staff really, they are just doing their jobs but there are times that I think that some of them just don't get it.  Which I guess leads to the idea of how could they?  I mean they do see it all down here and they know how this type of illness generally plays out but Mr.B is not the norm.  I would chalk it up to those that have kids vs those that don't but we've had many Nurses over the past 11mths that aren't parents and yet they can get it.  For example I will notice that his work of breathing is increased and I will point it out to the nurse only to be told that 'it's because he was moved', or 'he's stimulated with you here', or 'that's how it been for the past while'.  Yet without fail an hour or so passes and what do you know, she/he notices an increased work of breathing. 

I guess part of the issue I'm having today is that he's 'off'.  He's sleeping the day away, which I know he's sick but he was more alert on his worst day two days ago.  The hardest (worst?) part of being the "MOM" is that science doesn't always back you up.  When the tests show he's 'good' but my gut says he's not.  His sinus rhythm seemed off to me, I don't know why, I obviously haven't studied Cardiology but it seemed off.  I asked the nurse about it and get all kinds of reasons from her (to which she is annoyed at me for even asking) and then I ask to have the Dr come in which then really annoys her.  I ask the RT to hold off on giving him anymore ventolin until the Dr comes in to which I get more annoyance like I am completely overreacting.  Now if you are to ask the majority of Nurses that have had us in their care over the past 11 mths (happy 11mth Birthday today B), I would think that they would tell you that I'm a pretty calm Mom who goes with the flow for the most part.  I never assume to know more than the professionals (well except maybe some residents), I am however a great deal more qualified in the school of B.  Oh how I wish I had a direct line to Dr.Fruitman (Cardiology)! She might tell me I'm wrong, that it all looks good but she'd also look into it first for me, not brush me off.  Perhaps maybe I've just spent too much time here as I know I'm spent, emotionally and physically.  It's not like I don't like his Nurse, she does really care, but she certainly is one of the ones that 'does not get it'.  I would have thought that after three days of being with him she would but it doesn't seem the case.  Of course it could just be me, but then again, maybe not (did I mention that I am sleep deprived and emotionally spent?).

Yesterday was just a bruise on my soul as I had to watch B be poked repeatedly and beside himself with pain and exhaustion.  I know people have to learn but I'm tired of B being the learning model some days.  He had an IV put in in the ER when we first came in and it was precarious at best however, it hung on and continued to work even after the second one they put in quit.  Braeden had a good morning yesterday and was playful and smiling but as the day wore on he got more and more agitated.  I repeatedly told the Nurse this wasn't his normal but when you tell someone that your baby really doesn't cry unless he's in pain they really don't tend to believe you.  Again, it's not the 'norm'.  Sometimes I just want to shout that Braeden is not in any text book (maybe I need to become one of the 'crazy parents'?) They decided to try to find a second IV sight as they didn't want to overstress the first one so the poking began.  First his Nurse tried repeatedly, then another Nurse tried repeatedly then they let him calm down and 'rest' before starting over again.  A third Nurse then went at it and after about the 10th poke I started to lose it and just had to sit by and watch with tears streaming down my face not knowing how my child can endure this.  Finally in came the Intensivtist (ICU Dr.) with the ultrasound and she then did three more attempts with ultrasound guidance but everytime she got into a vein it would collapse.  All I could do is just cry and tell B repeatedly that I was sorry.  They gave up after that with the hopes that the foot IV (the original one) would hang on a few days longer.  They then had to insert an NJ tube so that they could start feeding him again (in through the nose, down the throat, through the stomach to rest in the small intestine).  Which now means his hands have to be tied down to prevent him from pulling it out (which he managed to get it an inch out so he's now on a short leash).

B continued to be upset most of the afternoon and into the evening.  He hadn't slept all day and was beyond exhausted.  His eyes would roll up into his head and he would sleep for 3 mins and then wake screaming and crying.  The Dr examined him again and said to me that all the tests were showing her he was 'fine' but she did agree with me that he was not comfortable and asked me what my 'mom' gut was telling me (which impressed the heck outta me but coming from a pregnant woman I guess I shouldn't have been so shocked).  I told her again he was in pain and that I didn't know why.  His foot IV came to mind again but I didn't say anything just told her I didn't know.  With an NJ insertion you have to have an xray done to make sure the tube is placed properly and she called me over a short while later to show me his intestines were full of gas.  That would certainly be painful!  With the ventilator pushing air into his lungs it means some gets pushed into his stomach too.  I thought we had been circumventing that with venting his g-tube non-stop except when he got meds but apparently not.  I agreed with her that it certainly would cause him discomfort but still felt that there could be something else.  We went through a shift change at 7pm and his new Nurse came on and when she was assessing him she checked his foot IV and said, "oh".  She then asked another Nurse to check it and they both agreed it felt a bit swollen but it was so taped up to hold it in place they couldn't be sure.  She really didn't want to call it though and be wrong as it was his only IV site so I went over and ran my finger under the support and was horrified to feel how swollen and tight the bottom of his foot was.  I told her to pull it, it was certainly swollen and immediately felt horrible that I hadn't personally checked it earlier even though I had asked his Nurse several times if it was ok (could be one of the reasons she's frustrated with me?).  They informed the Dr and sure enough when the tape and board were pulled off his little foot was purple and swollen to twice the size.  Yeah, that would hurt.  My poor poor sweet baby boy. 

Of course what this also meant is that the poking had to commence as he needed an IV for his antibiotics.  Thankfully they had the right of mind to call the NICU and request a Nurse from there to come over.  I told B that it would be okay that I knew Colleen (one of his Nurses from his NICU stay and who was with him over Christmas last year) would come.  (I had seen her earlier in the evening when she came on shift and told me that I looked like I needed a hug to which I explained the non-stop poking he'd been through).  Sure enough it was Colleen that came over and she looked him over and said she could put one in his scalp.  I told her to go for it, I was past caring and just wanted a line in so he could sleep.  So out came the razor and he got a 'NICU haircut' (I think they would agree with me when I say they are amazing nurses but they skipped the beauty school classes).  Only two pokes later and he was good to go.  I would say that it's partially because she's done maybe dozens of IV on him but I think it was in great part because she cared and coaxed it out of him.  One final blood gas (poke to the finger and milk out the blood) and a few more adjustments/assessments and the poor kid could finally sleep.

As in typical Braeden style he can't let us get too comfortable and proved that with having his oxygen levels drop overnight.  So back up on the pressures in the ventilator and up on his O2 levels they went.  It has seemingly carried on into today as they've had to adjust his settings many times throughout the day.  One step forward, two steps back.

And yet through it all what truly breaks my heart over and over again is when he smiles at me.  He's been through more medically in the past 11mths then most people do in a lifetime and yet he can still smile.  That's what gets me the innocence and forgiveness in his angelic smile.

As it is Thanksgiving weekend I do have many thanks to give.  I would like to thank all of you for your continued support and kind words and our family for their non-stop love and help (and the promise to catch me when I finally shatter into a million pieces).  Thank you to Jodi for feeding my household dinner the last two nights when I know you don't have a lot of time to spare in your own life and for offering your house for a Thanksgiving dinner tomorrow.  Thank you to so much to Gina for taking the boys yesterday, to Scott and Colleen for taking them today and for Jenn for covering for tomorrow so that my sick Mother could have a reprive to heal herself.  Thank you Amanda, Jen N and Lisa for offering to take them as well as any others that I've missed!  Through all of this we are blessed with the love and support we have, it is because of that continued support that I can get up each day and face whatever hurdle is next.

Sick Little Man Back to the ICU

I certainly wasn't anticipating writing a post from a room in the PICU while Braeden is being 'milked' for yet another blood gas level.  Mr.B has decided that my/our lives aren't exciting enough apparently!

He had been a bit fussy for a few days but Monday night after he went down for the night he started to retch.  Michael and I vented him, got him settled and not even 1/2 hr later he was at it again.  This carried on for another four hours before deciding to take him into Emerge.  He was retching so much and so frequently by this point that I had to hold him in my arms while Mike drove.

When we arrived at Emerge it was blissfully quiet and we got in right away, we even by-passed nursing and got seen by the Dr right away.  Of course when the Dr walked into B's room he was happy, kicking and laughing...figures.  I explained that he was sick (I swear), needless to say, he was sick enough though to put on a good show for the Dr.  I (and the Dr) figured it was just a tummy bug and given his Fundo surgery he was/is unable to vomit so retching it is.  Onward with the anti-nausea and I thought we'd head home, nope.  Drug didn't work so onto an IV to put the drug in intravenously...5 pokes and an hour later he had an IV (and I needed Ativan).  Abdominal xray - clear, blood work - unremarkable...Braeden, retching his little heart out.  Shift change and new Dr and she asked about history of UTI's (urinary tract infections) or any other infections...light bulb!!  So of course I was annoyed that I'd not thought of it but in all fairness these symptoms were new.  His urine dip was nasty to say the least so upstairs we were sent after only 8 short hours in Emerge.

We arrived upstairs to a wonderful welcoming committee and some of our favourite nurses (Mr.B's girlfriends really as they just flirt back and forth!) were on shift.  The thought was it was a nasty UTI and we'd get the antibiotics started and head home in a few days.  He had a good night on Tues and when I came in Weds morning I noticed he had an increased work of breathing.  He had a chest xray done and it was fairly normal (for Braeden) so the Dr wasn't too concerned.  Throughout the day though he was working harder and harder and got lethargic and fussy.  By 3pm I was getting concerned and as the next few hours proved he was getting a lot worse.  He started getting blue around the mouth and wasn't even aware that I was with him, he was just completely lethargic and moaning/whimpering.  They activated the STEP team (nurses from the ICU) to be on hand for extra help and they came up to assess him.  They were trying to formulate a plan of action for him when he started to really struggle so they called the ICU Dr up for assessment and he was in B's room for all of a minute when he said, "take him down" (meaning downstairs to the ICU).

Down we came and got another welcoming committee and this time they were all coming to see how big he'd gotten since his last ICU stay in May.  They started him on high flow O2 (which forces air into his nose) and that seemed to make the difference.  Dr.Volmero did warn me that it would get worse before it got better.  The assumption was that it was the start of Bronchiolitis which is viral which also means there are no drugs to make it better. 

He had a good night on Weds night and when I talked to the nurse at 3am Thurs morning she was joking that he was doing so well they didn't know why he was down there.  I warned her not to say that in front of him as he'd take it as a challenge!  I'm not sure what happened in the next three hours but by 6am I got a call from his nurse saying they had to change him to Bi-Pap (Non-Invasive Ventilation).  When I got in Thurs morning he was annoyed at the mask but tolerating it well.



I was with him for the next 13 hours and he seemed to progress well which was reassuring.  By last night he was actually having small playful periods and was even handing out little smiles.  It was nice to see our B back again!  I had a chat with the Dr and there was still no real consensus on the cause of illness to whether it was Bronchiolitis, Pneumonia or a partial lung collapse.  The good news was that he was progressing nicely!

I called his nurse at 3am this morning (just seems to be my time to call) and all was well, he'd had a good night and had some good resting periods.  When I got here this morning he had a new mask on (still bi-pap) because they noticed he was working harder.  The new mask didn't seem to make much difference in it's deliverance so onto yet another one.

He has been getting progressively worse today and is struggling again to breathe even with the Bi-Pap assistance.   He has gone from being completely miserable (which is so heartbreaking to watch) to lethargic again.  He is also starting to swell up now as well which is more than a little concerning to me given his history of blood clots.  The answers I've gotten so far are "hurry up and wait it out". 

My biggest fear now is that they will have to intubate him (which makes me want to throw up).  I am trying (with great difficulty) to hold it together today for B's sake but it is so very hard to sit by and watch him suffer through this.

Make a Wish

More than two weeks have passed and one of those was spent back in hospital with the hopes of resolving B's GI issues.  Having the boys back at school is wonderful yet awfully quiet for Braeden and I, although T was home sick today with his first 'flu' of the year.

It's been a lovely (yet over too soon) visit with the in-laws for the past week.  I was giddy knowing that I was going to have some extra help for awhile and that the big boys would get an outpouring of love and attention that they so deserve!  It is so nice for the boys to have the focus on them for a change and laughter throughout the house.  I'm so blessed with the in-laws that I have!

Mr.B's week in hospital was frustrating in a way as he got admitted then was 'ok' while he was there.  We did get him right onto a feeding pump and are now running his feeds over an hour and a half every three hours.  Yes, I do feel as though I am feeding the kid non-stop.  His stomach seems to tolerate that better and his poops improved while he was there, of course that only lasted the first 24 hours when we got home.  We are now under the care of Dr.Wrobel (GI) and the good news is that she thinks it is maybe a motility issue with the guts.  It just means they slow down to enjoy the view every once in a while I guess.  The intestinal tract is the most fussy and unpredictable parts of our bodies and it doesn't take much to send them out of wack (yup, that is the medical term!).  I am still desperately trying to find that 'balance' for him, nothing like keeping a 'poop' diary! (yes I am aware of the number of puns I could add in here!).

On a super exciting note Mr.B (the amazing) rolled over from his back to his front twice in a row last night!  How fantastic to see!  He gets a bit frustrated though at the whole process of getting out of it though!  I think that his mind is that of a 10 mth old and it must be frustrating for him to have to try to find the control in his body.  He is growing stronger each day and getting bigger which is nice to see.  He has so much leg strength that I was talking to a social worker today about the need for a brace for his torso so that he could go in the jolly jumper, he would LOVE it!  So if anyone sews and wants to develop something...!  I am certain that this little guy will walk one day, he'll most likely need some form of support (like a brace) but I can see him doing it no prob!

One thing that I've come to appreciate along this journey are strangers and how alike in the world so many of us are (rude people aside that is).  I met a Mom the other day who just came over while we were in the waiting area at Children's for Audiology and asked about B.  She explained how her daughter was finally diagnosed with Noonan's Syndrome and she's now 9.  We compared war stories about surgeries and successes along the way.  I have to admit I'm not the kind of person that generally would go up to a stranger but I certainly welcome questions about B (when they are asked kindly).  It brings to mind a YouTube video I've seen of a young Mom who's little guy was born without eyes and how scared she was to go out in public.  Now obviously Mr.B's appearance isn't that severe but people are certainly curious as I would be too.  I've met so many warrior Mom and Dad's along this journey that are inspiring and kind.  There are so many medically dependant kids in this city that I just need to remind myself that we are certainly not unique in our situation.  Although on the flip side of that the last time we walked into Emerge and the nurse asked B's name and said, "oh, that name sounds familiar".  Of course the older B gets he'll need a dual room, one for him and one for his file during hospital stays.

Another warrior Mom that I've had the pleasure of coming across the past week is Christine Killam who is walking to raise money for the Make a Wish Foundation.  She has three kids and two of them have the same life threatening condition that ultimately affects their bone marrow (without me knowing much about the condition).  We've worked hard to bring out the awareness for the importance of blood donation thanks to Braeden but what is also needed are people to sign up to the "OneMatch" Program.  The OneMatch is in place to match willing donors to people in need of bone marrow transplant, your match can give them a second chance at life. There is only a 30% chance that there is a family member that will 'match' for a needed recipient so OneMatch opens the door to finding people willing to donate that would be a great match.  Her video is touching and without a doubt people need to know, this could be you or someone close to you that will one day use the Make a Wish Foundation.  Who knows?  One day Mr.B might get to make a wish too!

That kind of brings us to the reality of our lives, I know many of you think or feel that one day Braeden will be 'okay'.  While Braeden is doing really well now and is stable he's still a very complex little man while many of his organ systems are watched and checked regularly.  This last hospital visit it was brought to our attention that we might qualify for the Palliative Respite Care through the Flames Rotary House (at Children's).  It was a punch in the gut but also something that Michael and I have discussed and realized all along, this little boy is not ours to keep, he is here for as long as he sees fit.  Now I hope and dream that he'll be here for a good long while but by taking him into the Palliative Respite Care they are subtly saying that they aren't sure he'll make it till his 17th Birthday (Children's is only for kids 17 and under).  Of course there are no guarantees, this kid has amazed and astounded Doctors already and will continue to do so of this I have no doubt!  The truth is they don't know, no one knows.  No one has seen a child the same as Braeden (if one exists) and even so B is his own person doing his own thing on his own timeline.  The nurse that first brought it up to me (bless her heart) was tentatively talking around it but when I flat out told her that Mike and I are aware that this kid is here for as long as he'll let us have him she was relieved that I understood.  NOW this does not mean that I accept that or even believe it completely but it is what it is and I need people to understand that.

People constantly ask how Mr.B is (and thank you for that) but are seemingly confused when I say that he's in hospital or had been in hospital again.  I don't think that it is in our nature as humans or certainly as parents that a child could not just 'get better' and lead a full life.  People don't understand B's complexity and there is no way to help explain that as I don't think I get it all either. It isn't as though he has an 'illness' or diagnosis that people can research or relate to and that is what makes it hard.  People that are taking this journey with us and are seeing it from the inside have a pretty good understanding (I think) but those that know us more from a distance have a very hard time (it seems to me) to understand that he's not going to be 'better' or for lack of a better word 'typical' (ugh, or worse 'normal'!).

What I do know is that I wouldn't change a thing about him because he is the most incredible little creature that you could imagine.  The only thing I would wish to change is that I could take all of his pain for him, every poke, every xray, every surgery, every exam, all of it.  I can only do the next best thing, stand beside my little man through it and hold his sweet hand.

For a moment of pure J-O-Y: