Tuesday, 3 April 2012

Loving Spark (or Scorch)

This is Mr. B loving Spark (or Scorch as his tag says)

Well I still am feeling somewhat like crap, and it is getting a bit ridiculous!  I went back to the Dr today to make sure that I'm actually on the right antibiotics as I'm still coughing up the 'green' (sorry!).  I asked the Dr if I am contagious and he says "Probably not", yeah that 'probably' doesn't cut it when you have a child with chronic lung disease!  I'm told that the cough can last upto 5 weeks though, not looking too forward to that!  The boys seem to be on the mend for the most part but are still hacking whenever they exert themselves, which for young boys is all the time!

I did go and see Mr.B yesterday, my nerves couldn't take it anymore!  I can't sleep and am having anxiety about all kinds of silly things these days which means my stress is through the roof (not really surprising).  He was so sweet and smiled for me even behind all of my 'gear' (gown, gloves and mask).  I didn't stay long, just enough time to deliver laundry and pick up new laundry really.  I held back from seeing him today but think that with being really careful I'll resume my hospital home tomorrow.

I did stay long enough yesterday to touch base with his Nurse Practitioner and Dr.  They are looking at putting B back on C-Pap (groan) for when he is at rest.  He is able to sustain himself (mostly) during the day but will d-sat at night once he gets into a deep sleep.  The hope is that he'll be able to be just on regular oxygen during the day and then C-Pap for when he is sleeping.  Sigh, I know he can't come home till he is off the high-flow but he really hates the C-Pap.  The 'trial' for it will have to be done in the ICU, so back downstairs we'll have to go for a week or so.  I did ask if this was worth it since we're looking at surgery in the next month but the Dr figures we've got time to do a decent 'trial' before the surgery date.  They have also decided to withhold changing his NJ back to an NG (feeding tube) for now till after they do the C-Pap trial due to the fact that C-Pap pushes air into the stomach. Still sighing here.

No news on the surgery date as of yet, we are hoping to have our meeting this week still.  Although it is Tues and I've still not heard being as it is supposed to be tomorrow...

He is gaining weight steadily (not too hard to do when you are fed 24/7) and is getting daily time for therapy which is great.  He is generally a pretty happy baby all things considered and has a good group of 'Guardian Angels' that watch over him each week.  I'm so very blessed with the wonderful friends that we have!

It is very difficult to face yet another major holiday without our little man at home, he is having a lot of his 'firsts' in the hospital.  He'll (we'll) be celebrating his 5th month Birthday on Good Friday as well, oh how time flies (yet also seems to stand still at times).  I'm sure the Easter Bunny will figure out where to find him...

Such a sweet boy we have!


Anonymous said...

Lia, I have followed your blog with great interest and you are an amazing Mum! I used to work at ACH and I know they will take the best care possible of your little man! Your writing is so heartfelt and genuine and your love and care for your whole family shines through-someday if/when time permits you should consider putting this diary into a book-it is very well written and straight from the heart! Take care of yourself and I hope you feel better soon and that your little guy continues to improve!! Great pictures!

Anonymous said...

Hi Lia, I have been following your blog and I admire your strength, dedication to your family, especially baby Braeden. Your story has truly touched my heart after I heard it on the news. I am a mother to seven month old twins and they spent five and 14 days in the Nicu. I know your baby boy is recieving the best care possible and is where he needs to be. You know it won't be forever and soon you can hug him close for the rest of your life.

I wish you and your family the very best and I know braeden will continue to improve daily. God bless you and baby Braeden.

Lia said...

Thank you so much to both of you for your very kind words! It really is the kindness of strangers (although you fall into a friend/stranger category now since you read this!) that makes this world a better place. Thank you so much for your support and for taking the time out of your lives to read the blog and comment! All the best!