Tuesday, 31 January 2012

I've Got My Eye On You

Daddy, T and Ry
I just want to start by saying what a huge success our Blood Drive was on Saturday!  I only got teary eyed a few times but kept it together for the most part.  We had 10 spots to fill and fill we did!  Many of our donors were also first timers, how cool is that?  Hopefully that means it is the start of a trend!  A HUGE thank you to Lorna Zebedee, one of the best friends one could ever hope for, for having the brain child and organizing it in Braeden's honour.  The boys enjoyed watching and even held hands with some of the donors, especially their Dad (wouldn't want Daddy to be scared!).  Thank you to Jenn Mills, Kathy Mills, Tania Stephenson and her Mom, Greg and Katja Bessy, Colin Mostert (Cheered on by his partner Sara Strong and their new son Hamish after driving in from Canmore to be there with us!), Nancy Osness (not sure if you got a later appt or not) and Lisa Goldie (who got a cold last minute but will donate soon!).  I would also like to thank the donors that left cards for us and donated in B's name, I was very touched. 

One of my tear jerker moments was when we were all gathered at the snack table and a woman that was at a table close by came by on her way out and handed me a note written on a napkin that said, 'Lots of love' with a 20 dollar bill stuck inside.  She had tears in her eyes and I was gobsmacked into silence.  All I could muster up was a "oh my goodness, thank you!".  It was wonderful to watch the patrons reading B's story and those that chose to donate in his name just are all in my heart! Thank you too to Nurse Lisa who donated on the Tues before for Mr.B, bruise and all! (pictures of the drive to come)  For anyone I've forgotten to mention, or for those of you that are regular donors (like my Aunt Lorraine and Uncle Adam and my Uncle Brad) or for those of you that have donated but not mentioned it...THANK YOU!!  Please post on the FB wall if you have donated, I would really love to have an idea of the sheer number of donors that have become of this!

Onto Mr. B!

He is back on high flow nasal prongs!!!  YAY MR.B!!!  He seems to be doing well on them and they are certainly easier to keep in his nose than the C-PAP.  He is on 5 litres which is a lot but that's okay!  He is certainly feeling a bit happy with the change as he loves to smash his face in his blankets when on his tummy and catch a few winks like that.

I am feeling a wee bit like a yo-yo these days!  Do we stay or do we go is the question right now.  Braeden is the ripe old age of 12 weeks today, Happy Birthday Baby Boy! which means he is now 'too old' for the NICU.  We were told last week that he'd be transfered to the PICU in the next two weeks or so, that to me meant by Monday (which is today).  Once the Dr's get an idea in their head there usually isn't a wait time associated with it.  So when they announced yesterday that B would be moved over that afternoon or today, I surely wasn't surprised.  What is surprising is that anxiety I feel by changing over.  It is all a bit silly being as they are  bound to have wonderful Nurses and Dr's there as well, it is just a comfort thing.  We've been at Children's for almost 10 weeks now and I know most of the staff quite well, not to mention my favourite nurses and B's favourites too!  So the PICU was waiting on a discharge in order to get Braeden a bed over there.  He'll be given a big boy crib and everything!  I guess what it is is that I'm not good with change, never really have been.  I can generally roll with it but I find the older I get the harder the 'rolling' part gets.  I got called last night that he wasn't being moved until this morning now, and got told to just relax and get some sleep (ha). 

I arrived this morning fully expecting B to be getting ready for his big 30 foot move and was told that he wouldn't be going over now for a few days because they have a bed finally but not the staff to cover him. Sheesh!  Then I get word tonight from his day nurse that the unit clerk from unit 2 was by to see him and they are considering sending him up there instead!  Yikes!  Can you say anxiety jump?  I've got nothing against the unit 2 but in my opinion Braeden's needs far exceed a normal unit right now.  I guess I sounded panicked because Trish (B's primary and the charge nurse on) called me back to tell me she'd check into it.  The Neonate called me back and I again voiced my concerns about having a baby in a big room unmonitored that can't scream, he has NO voice still!!!  Anyhow, the Dr is going to do a walk-through the ward tomorrow and get a sense of the environment and if they are equipped to handle a serious case like B.  What it comes down to is that he is 1) now too old for the NICU (he's not a neonate anymore after 44 weeks gestation) and they are desperate for his bed, 2) PICU should take him but they are short staffed for such a case and 3) unit 2 has space and the staff but not necessarily the ability to handle his specific needs.  Unit 2 is generally for stable babies on their way home, not babies that have in the very least several more months in hospital ahead of them.  I'm trying not to freak out, really!  (which is why I am typing madly at midnight, again)  Braeden can certainly have times when he is quite stable, like when he is asleep but my main concern is that he is still unable to maintain his sats when he gets upset.  It is also hard to hear a baby that makes no noise and to get to him before he is well and truly upset and setting off all the monitors because he can't breathe anymore.  Wherever he ends up I'm sure it will all be fine (keep breathing, keep breathing) but it is certainly going to be a change from the small intimacy of the NICU at ACH.

On the less stressful side of things Neuro was by to see him today and they were happy and satisfied by what they saw in terms of changes.  His reflexes were good and they did get a chance to see him awake and settled as I was holding him during the visit.  Neurology also concurs that they think that the testing for the mitochondrial disease is unwarranted.  So yay for that.  Guess the Dr's aren't satisfied with  my diagnosis of 'Braeden Syndrome'!  A testing we will go, a testing we will go, high ho a cherry oh....yeah.

The latest and greatest (?) addition to 'Braeden Syndrome' is a tear-drop shaped or oval pupil in his left eye.  We are now waiting for an Opthamologist to take a look at this one.  We don't know if this has been there since birth or since the strokes since he's just now really started to open his eyes regularly.  I'm trying not to speculate but it can be caused by several different things like a detached retina or brain trauma (can you say stroke in the vision area of the brain?).  No point stressing on it until we get a specialists view of it and opinion. 

Wow, this Braeden Syndrome is pretty complex, one should write a book about it or something!

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