Sunday, 11 December 2011

An Un-Happy Day

I will apologize ahead of time, this is not a happy or positive post:

I'm not sure where to start on this post, I hate to write anything when I'm not in a somewhat positive frame of mind but I know many of you are waiting for an update.

The best way to describe Braeden right now would be the fact that when I walked into his room today I promptly burst into tears upon seeing him.  He is so horribly swollen and just when we think it can't get any worse it always seems to find a way.  His weight tonight was 4.2 kg and his actual weight is only 2.6 kg.  There are what 2.2 lbs per kilo I think?  You do the math.  This poor sweet boy actually (and I can't believe I am saying this), looked worse this afternoon than the day he was born.  He of course is still beautiful and perfect in every way but by worse I mean he is so terribly uncomfortable.

It has been very painful visiting over the last two days as Braeden has not been particularly responsive to Mike's or my voice.  He is willing somewhat to squeeze a finger half heartedly but he is no longer able to open his eyes. He has gone back to being the limp noodle that he was back a week ago when they realized the sepsis was there.  It is so disheartening that after almost a week of the antibiotics that he is seemingly getting worse.  The Dr's and the Infectious Disease Dr's are confident that we are using the right antibiotic for this bacteria but they are also still doing regular searches for another possible source of infection.  We have had back two 'negative' blood cultures and one 'negative' sputum culture which shows that the drugs are working but with the constant need of platelets his body won't be able to keep up with the fluid overload.  He is now getting an average of four platelet transfusions per day and plasma on top of that.  His platelets went up to a reassuring 75 this morning but then crashed down to a resounding 13 tonight.  I am completely unable to describe in words how sick he really is right now.  He is still having issues maintaining his heart rate at a constant without it dropping down and swinging up again.  They are looking to do a repeat echo cardiogram tomorrow to keep on top of it.  His blood pressure seems to be okay as long as he's not feeling stressed which would be any time one of the nurses has to do anything in his presence.  The good news of the day is that the plural effusions (fluid around the lungs) haven't gotten any worse but he does have a small amount of fluid inside the lungs now.  It is hard to believe that he'll ever get rid of all this fluid again because his kidneys are on-again off-again and his sodium levels are too low now to use the lasik (diuretic) anymore.

I  am generally feeling overwhelmed and terrified much of the time these days while trying to maintain a 'happy' house for T and Ry.  We took the boys to Mike's work Christmas party on Saturday and they had a wonderful time between the bouncy castle and the pizza.  I however spent the party looking and admiring the number of new babies that weren't there last year and feeling how completely unfair that Braeden couldn't be there too.

I do have faith in the medical team caring for him but it is so hard to believe sometimes that this ride might actually have an end where life could be somewhat 'normal'.

There are positives for sure, like his platelets did make it up to 75, at least he squeezed a tiny bit on my finger, and he's in a great facility but they are getting harder to find right now.  I suppose I just need to cut myself some slack and realize that I'm certainly going to have crappy days too. 

What can you do to help?  Donate blood my friends, there are others out there that need it as much as Braeden and we are certainly using our fair share these days!

1 comment:

Anonymous said...

Wow, you took the words right out of my thoughts...donate blood. I have never done this before but when I began to read your post today Lia, the idea of donating blood was the first thing that popped into my mind. I admire your courage. You are such an inspiration. I can't imagine how difficult this is for you and your family but please know how much you have brought to so many people. I wish there was a way to make the pain for you go away. If there was I like to think I would be the first in line but I also know there would be many more there right with you...that is the dramatic effect your family has had on so many. Stay well, as best as can be. <3