Wednesday, 30 November 2011

Mend a Broken Heart


 The short (and really important part) version:

Braeden came through his heart surgery like a champ, he is my little hero superstar.  Our baby's broken heart was mended so now we (Mike and I) can all start to heal ours.  It was about 2 1/2 hr procedure and they took a vein (a 'patch) from his arm and attached it to his aorta.  We did not make it before they took him into surgery (Braeden when you are old enough to read this, I'll pay for the therapy for us both!  I am so very sorry my sweet boy, I tried, I really did.)  They had a somewhat difficult time stabilising his blood pressure afterwards, it kept going further down, not up.  The surgeon (my new super hero) Dr. Ross was calm as all and was confident that there wasn't a bleed that was causing the pressure drop.  They did two chest xrays and an echo cardiogram within 20 mins so we could all be sure.  He did have a drop in his haemoglobin and was given another blood transfusion (his fourth so far in his three short weeks).  For any of you that give blood regularly or ever, thank you thank you thank you (I know Jodi is a regular donor and I believe so is his Auntie Mobee).  It is because of amazing people like you that Braeden is getting what he needs.  His incision is about 4-5 inches long from his left side and around his back.  He has a drainage tube coming out underneath it as well for now (it is horrible to see!).   He was really still under anaesthetic when we first saw him as they were letting him come out of it on his own.  When we came back he was very heavily sedated, which he'll be for the next 24-48 hrs, but opened his eyes a crack several times while we was there talking to him.

The longer version (full Mommy guilt involved and will be forever in my heart):

I was going to take the Red Arrow bus up to Edmonton today as we assumed (first big mistake) that Braeden would be in Edmonton for several days before they would do surgery.  I was far to exhausted to be up at 4:30 to get the first bus and the boys were devastated when I told them that I was leaving for a bit which took out the next bus.  I expected a reaction from Torin and Rylan but not the full-out sobs that I got.  My poor little poppins just got me back and then for me to tell them I was leaving again was pretty damn hard to hear.  I felt so horrible that I kept them home from school to spend the morning with them and then they could drive me with Grandma to the bus for noon (mistake?? number two).  I had spoken with the nurse in Edmonton the night before after he'd been transported and got settled, she indicated that they would be doing rounds sometime between 9-1pm and then they would make their 'plan' for Braeden from there.  It was not at all conveyed that surgery could even be a possibility today!  Needless to say when I called at 11:30 (en route to the bus depot), I was beyond devastated to learn that not only were they going to be doing surgery today but there was no way in hell that I was going to be able to get to him on time.  The poor nurse Donna that broke the news to me felt so horrible that I felt badly for her!  We stopped driving, got Mike at work and made the plan for the two of us to drive up instead.  I cried so much waiting for Michael to get home so that we could leave that Rylan asked if I was going to cry the whole way to Edmonton.  I told him that I just might.  I  knew we would be there for when he came out but the idea that I was not there to hold him and cuddle him before they took him in is just so horrific to me.  (I know, I had to make a choice and I do have the other two children that had need for me today, I get all that but it is just soooo not cool still.  And yes, I'll probably beat myself up till the end of time, I'm a Mom after all!)

The surgeon called as we were leaving home to confer with me and get my oral consent for the surgery.  He was very concerned that we were going to drive mock speed to get there and get in an accident.  I suppose that could have been the case had I been allowed to it was Michael drove very responsibly.  He explained that the procedure needed to be done after he had examined him himself and that he wanted to perform it sooner rather than later.  I had to give my consent to the surgeon and then repeat it to his nurse.  Those were some of the hardest words that I've ever had to say and I hope to never have to say them again to another Dr.  I had to say that "I give my consent for you to perform surgery on Braeden Lousier's (apparently Lousier-Hicks is too much for hospitals to deal with so he is just baby Lousier for now) heart today".  UGH!!!

We did make it with plenty of time to sit and wait out the rest of the surgery. And do the wait, wait, wait...his surgeon came out to let us know that it had gone well and as planned.  He explained the procedure again that he'd opted to do the patch not cut out the narrowing and that he was stable.  He also said that one in five kids will need a second procedure but using a balloon (angioplasty?) to widen the space was often effective enough.  Like I said earlier, he was pretty out of it at first but did open his eyes and note that we were there with him later (which again breaks my heart that I wasn't there earlier. Nope, won't be letting that go just yet!).

I let Mike talk me into coming home to rest, I mean sleep.  We were truly fortunate that a room opened up at the Ronald MacDonald house as we were en route to Edmonton.  I have to take a moment and tell you what an amazing facility/house this is.  It is set up to really make our lives as parents easier.  It may not be a healthy food choice but for those of you out there that buy 'happy meals', thank you for funding such an amazing place!  What this journey has taught me thus far is that I have a stronger need than ever before that I need to give back.  I've always supported Children's Hospital fundraisers and such but if any of you want or need something to be involved with, this is where it's at!  RMH costs about $125 per room to run and they charge us a teeny $12 per  There are homemade bootie slippers for you at the door to wear while you are here (and take home after) and an entire room for quilts that any kid here can go chose and take one home.  It is such a wonderful, positive place that hopefully Michael will get to bring the boys back up with him in the next few days so that they can get a 'positive' experience to remember about this whole ordeal.

The plan for now is for Mike to head home tomorrow and I will stay as long as Braeden is here.  We are looking at him being transferred back to Calgary as soon as Thursday if you can believe that!  He just needs to be stable and strong enough for the journey home and they will happily send him.  I have no idea how long he'll need to be in Children's for after this leg of the journey but we are still hoping to bring him home for Christmas.  We will have to likely have him on oxygen and I'll be trained with my own baby stethoscope to deal with his SVT's and meds but it is still a possibility I think.

I am certainly relieved in many ways to have the surgery behind us but also know that this part of the journey is far from over.  Thank you again to all of you for your love and kind words, we've had so much positivity come our way through this.  Those of you that have offered help in the form of food, rides, taking the kids to play, etc. I can't begin to thank you enough. 

It certainly does take a village to raise a child but it takes even more to raise one with medical needs.  A very heartfelt thank you to all!

The best quote in my room here at RMH on the toy box:

"We are all each of us angels, with only one wing.  We can only fly by embracing each other." 
-Luciano De Crescenzo 


Anonymous said...

I miss you and am sending so many hugs and kisses through the air waves. My love to you all.


Lia said...

Love right back! :)

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