Friday, 17 January 2014

Back To Mr.B

Happy Birthday to my great big 9 year old boy! 

We finally have our 'full' Mr.B back!  He is certainly feeling more of himself the last few days which is so nice to see.  He is 'chatting' all the time and very playful and happy (all of life is a smile when you're Mr.B).

It's been a rough few weeks fighting off this virus with B finally feeling better and then I felt worse and vice versa.  We ended up back in hospital on Jan 2 because when the Homecare Nurse came for a visit he was only able to Sat at about 90-91%.  He had that audible 'wheeze' and was just not a happy boy.  I still had our bags packed from our last stay and I knew that I was most likely going to have to take him in but was still trying to manage it all at home. 

I didn't get to ACH until later that evening when Mike got home (if it was in any way urgent I would have gone right in).  When we got there the little stinker was able to Sat 97% at the Emerge desk!  We were still taken back right away due to the previous admission and the fact that his lungs were so tight.  It was a Dr that we've had a few times (thankfully) and he's seen B at some of his worst Respiratory admissions so at least he had a baseline to go off of.  The Dr walked in and B was laughing and playing with me, sating 97% on the monitor and the Dr said, "any other person and I say, why are you even here?".  It's so nice to know that the Dr's do take me seriously and do listen to me (most of the time anyhow).  I quite like this Dr because he then took a listen to B was not at all happy with what he heard.  "Ahh, yeah, that would be why".

I explained the constant need for ventolin at home and that he'd not really progressed to getting better after our release on the 27th (which, yes, I did push for).  We went for a repeat chest x-ray and had a chat with the RT.  The xray actually did show some improvement over the one on Christmas day so that was reassuring as well as the fact that he was still able to maintain his sats.  The main concern was whether or not B would be able to maintain his sats while sleeping.  I knew that with B sating as well as he was that I could push to take him home and I also knew that Nurse Bo would be able to come by the next day to listen to him and check him over.  The Dr wanted to hold us until B fell asleep but I explained with how over stimulated the ER makes him that that could be hours away (I also knew that the Emerge was packed).  I asked about 'borrowing' a Sat monitor to read his overnight levels and the Dr was happy with that arrangement.  Unfortunately the RT explained that I couldn't actually borrow one unless it came from the Respiratory clinic so that was out.  I reassured the Dr that I was completely comfortable having him at home now that I'd seen how well he was holding his oxygen and I promised that I would bring him back in a heartbeat if needed (this Dr also knows how fast B can flip from 'ok' to very ill).  He did stress that I should consider buying a Oximeter for home (measures oxygen and heart rate) and I had to laugh because I didn't want to bring B home at 7 1/2 mths without one and all the Dr's and RT's said if I needed a monitor then B wasn't ready to be at home.  The Emerge Dr also said that he was on shift the next day as well and that if there were any issues to just bring B right in to see him.

I did have the Homecare Nurse come out the next day and just take another listen to him (he wasn't any worse or better) and she said he sounded about the same.  We had an appointment with Dr.Cassie the next week so I was confident that we could make it through the next few days.

**I just have to say how thankful I am for the Homecare Staff (our Nurses, RT's and Physical Therapist) because they will try their darndest to help out a family when needed!  They will even rearrange a schedule so that they can come all the way over to your house!**

When we saw Dr.Cassie on Monday B was certainly still not himself but she did say that his lungs sounded okay.  Works for me!  I had arranged to get into see the Pulmonary (lung) Dr earlier then planned (we weren't supposed to be seen until March) so Dr.Cassie was happy with that follow-up to come as well.

We also got in to see Dr.Frank last week (Plastic Surgeon) and it had been almost 2 years since he'd seen Mr.B.  Dr.Frank was very pleased to see B's jaw growth and said that he would rate B's jaw (Pierre Robin) as being mild to moderate now when it had been severe when he was born!  Yay for B!  I was thrilled that we'd made the right choice not to trach B or to do the mandibular distraction surgery (move the jaw forward)  when he was tiny and let him grow instead.  (Of course if it had not been an option for B to breathe we wouldn't have opted out of it).  It was a hard decision to make at the time, we were never expecting that B would be off his oxygen at 18mths of age, it was expected he'd be on it for many more years.  I look back at what this child has overcome and I'm just stunned!  When you hear him screech now you'd have no idea that one of his vocal cords was almost completely paralyzed after his heart surgery!  Dr.Frank did say that yes, we'll most likely still need palate surgery (extremely high/peaked palate) but that it would still be a little ways off for now.  From a jaw standpoint though?  Dr.Frank was happy to see how things looked and said that B's jaw will continue to grow with him and may even 'catch up' by his third birthday.  It is SO nice to have good news for a change!!

We had an anniversary of sorts last Saturday (on Torin's Birthday), it was our second year anniversary of donating blood.  Mike and I decided two years ago that we wanted to give back and we weren't sure how.  Our good friends Lorna and Amie thought of the idea of a blood drive and it worked!  We got right on board with the idea and we've now donated with a group of 8-10 friends every 56 days (give or take) for the past two years.  This makes me proud for several reasons but some of the biggest are that we were able to replace (and much more) the blood that B needed to survive.  We have had friends and family literally from coast to coast go out and donate over the last two years (some of them multiple times) all in Braeden's honour.  We've also had so many of our donors be FIRST TIME DONORS.  That is huge!  We are so proud to say that more then 1/2 of the people that have donated in B's honour did so for the first time in their lives!  It was a great day to celebrate so B wore his new Tiny Superheroes cape and wowed the donors with his cuteness (and his story and probably the chocolate cupcakes!).

B continued to drag his butt a bit though through the weekend but we could see bits of improvement each day.  The viruses this season sure have one heck of a long life!  We started this week off (Tues) with another visit from Homecare and all three of them were very happy to see B up and at em (and maybe just maybe performing a bit for them).  Shawnee (RT) said his lungs actually sounded great and Luci and Andrea (Nurses) were happy to see him a lot more active and alert then the last time they'd seen him.

We also met with our Physical Therapist and Dietician this week and they were both happy to see B progressing.  He was actually back on the chart for his weight in the 3rd percentile...I'll take it. 
Mr.Poser and Miss Sweet!

Teaching Araya how to crawl!
Mr.B is making so many gains both physically, cognitively and in speech that it is amazing to watch.  He is happily and consistently now saying 'Hi' when I (someone he knows) walk in the room and he is mimicking our intonations on other words.  He may not be pronouncing them but he sure is trying out new sounds in his throat.  He is crawling at a rapid pace (especially if he's trying to get somewhere he's not allowed) and he is certainly acting just like a 2 year old!  For a kiddo who is 'globally delayed' I would say without hesitation that he's certainly acting his age! :)  He has learned 'No' really well (both from us telling him and his response to us!), he is happy to get into everything (Rylie calls him a 'cute little monster' when the boys forget and leave toys around), and he's more than happy to have a fit when he can't/won't get what he wants (along with the lovely stage of hitting and head butting).  I'm THRILLED to write down all of these stages (though not thrilled at all when the head butt comes my way)!  He's growing in so many ways and he continues to challenge me each and every day.

From Our Home To Yours...

Thursday, 9 January 2014

The Season Of Giving Back

I hate being behind, I am (of course) my own worst critic, but this post is SO important!

I've learned many, many things (some I wish I could forget) in this journey but what I've learned is so important is to 'give back'.  It was almost an 'instant' need for Michael and I, we wanted to give back.  Mr.B has taken so much in terms of hospital support, etc and we felt that if there was a way to give back we would try to do just that.  It is the reason that we started donating blood every 56 days (or so).  The blood donations started initially with the want of replacing the 37 transfusions that B's had but then we figured why would we ever stop?  The need for blood will never stop!  If anyone is interested in joining us, whether in Calgary or wherever you are, please click on the link for the FB page for updates!

I had a pressing need to give back to The Alberta Children's Hospital this Christmas, our home away from home.  It is a big hospital with a great deal of amazing donors but I wanted to make an impact where I knew that I appreciated it when we were there, the NICU.  We have a world class NICU over at Foothills Hospital (almost across the street per se) so when they built the ACH they didn't initially include a NICU (silly I know).  They soon realized there was a need for somewhere to put these wee surgery patients that were coming in from the other NICU's for surgery.  The NICU at ACH is only for surgery kiddo's and they are generally children that are born clinging to life (as was Mr.B).  There are only 8 beds in total (but that is about to change this year!!) and they are generally always full.

Mr.B was born in November and due to part hope and part not grasping (or wanting to grasp?) the seriousness of our child's situation(s), I held out the hope that B would still be home for Christmas.  If you've followed our story you already know that no, B didn't make it home for Christmas (or for another 7 1/2 months).  B had heart surgery when he was 22 days old and from there went septic/meningitis and was critically ill (again) over that first Christmas.  I would say it would have been an awful Christmas, and I suppose it was in a few regards, but it really wasn't in most.  The ACH NICU was and is an amazing place.  The staff are incredible, the Dr's are astounding and we felt that Mr.B got the best possible care.  The staff went out of their way for the families that year, we came in to homemade baking, presents and so many other wonderful things through that hard week.  The Nurses who work in Pediatrics do it because of love, not because of a paycheque and they are amazing.  The Nurses who work in the NICU's do it because it is their calling, they are gifted with a gentleness and hope like no other.  The NICU Nurses hoped with us, they laughed with us and yes, they even sometimes cried with us.  Our journey in the NICU was made so much easier with the staff that supported us and cared for us.

I put a call out to anyone that wanted to help, either with a donation or with time and I was humbled that so many people were willing to help.  While most of the donations came directly from Mr.B's family and personal friends some came from others that I've not had the pleasure of meeting and some came from other Parents of ACH that know all too well the life of an ACH Parent.  For Mr.B's second Birthday I set up a 'wishing well' to take donations for ACH and our incredible family and friends donated over $400 to it and that was my starting point for the Season to Give Back.

Each fancy shoe box was filled to the brim! The majority of the money went to gift cards for Co-op, Safeway, restaurants, ACH Cafeteria, and the Good Earth (ACH coffee shop).  Inside there was also a blanket, a new pair of booties/socks, a 'Baby's First Christmas' ornament, home baking, an inspirational word find book, and a 'set for life' lottery ticket.  I am so proud to say that each box was worth about $250!  Way to go Team Mr.B!!!

We had planned on 8 boxes total and that is what I had made and I did discuss with a few of you (as I wanted it to be a complete surprise) what I wanted to do if there was an 'extra box'.  Sure enough, there were only 7 babies in the ACH NICU for Christmas this year and it gave me SO much pleasure to take our additional box and deliver it to one of my favourite families on Unit 2.  This family hasn't known a Christmas at home with their little one (who is a few months older than B) as their child hasn't come home yet (in over 2 years).  I was able to give them a little more love then I had initially planned and was so happy to do it!  The 'Baby's First Christmas' ornament and the wee booties I gave it to one of my favourite Unit 2 Nurses and asked her where it should go (I know there are many kiddos that had their first Christmas there).  She chose to give it to a baby arriving 'home' to ACH from heart surgery in Edmonton Christmas day.  I added a huge box of chocolates for the Unit 2 Families in the family room and another box for the Unit 2 Staff and we were done!

**Thank you to Angela MacKenzie for helping me assemble and deliver the boxes, with B so sick I don't know how I would have found the time to do them otherwise!**

We were able to deliver them all on Christmas Eve (I had planned for earlier but life and B have a way of changing for me).  I have heard back from two of the NICU Nurses that they were very well received and that the Dad's were the ones that were emotional.  I know how hard it is to go down to a lower income after a baby arrives and I know how much stress it adds when that baby is sick.  I also know that the Dad's feel a good deal of pressure to provide for their families and yet feel the grief of not being able to be present in the NICU as much as they'd like.  I left the hospital that night with a sense of 'lightness' and happiness but also some sadness.  (I think I also knew in my heart that we'd be spending our own third Christmas in a row there the next day)

For anyone that still wants to donate, B always has a page open for ACH donations on their site, click here. (His story does need to be updated on it!)

Among all my Thank You's I need to give I also have another huge personal Thank You to give first.

On the night of December 14th we had 14 gift bags dropped off at our front door for us by a 'Secret Santa'.  14!!!  (The hilarious thing is that the 'secret' was a bit busted since Mike saw the vehicle and I had a good guess who it was!)  For this person to take the time out of their own busy life and shop and wrap up 14 individual gifts for the boys and us was, well, astounding to me.  We are so blessed daily with the kindness and love that our friends and family bestow on us.  I've said it before but can't say it enough, so much of this journey has been made bearable by our support network.  (I'm not supposed to tell but this Secret Santa's name might rhyme with Gina Lachuk...or that could just be her name ;).)

To all of our donors (and for goodness sake if I've some how forgotten you please tell me and I'm SO sorry!!) in no particular order as I love you all the best!:


Hicks Family (North Vancouver, BC)
Zebedee Family (Calgary, AB)
Fawcett Family (Vanderhoof, BC)
Fawcett Family (Stetler, AB)
Fawcett Family (Ponoka, AB)
Tania Stephenson (Calgary, AB)
Ursula Stephenson (Calgary, AB)
Kelly Lock (Calgary, AB)
Reichel Family (Calgary, AB)
Harding Family (Rosemary, AB) And for the wonderful necklace!
Jacobsen Family (Calgary, AB)
Reutlinger Family (Airdrie, AB)
Johnson Family (Burnaby, BC)
Begaliyev Family (Calgary, AB)
Martens Family (Calgary, AB)
Angela MacKenzie (Calgary, AB)

And to the 90+ people in attendance at B's 2nd Birthday that donated to the 'Wishing Well', your donations inspired me to give back in a bigger way then I had originally planned!  We love each and every one of you!

From Our Home To Yours...