Sunday, 5 February 2012

Shut Up Already!

We survived our move into the PICU (Paediatric Intensive Care Unit), Braeden was not impressed and I was even less so! We've traded one ICU for the other and moved only a couple hundred feet down the hall but it is a different life in the PICU than the NICU.  It is simply different, it will get better, I will get to know the staff here and I will start to settle my anxiety over it all.  It is certainly hard making a change after 10 weeks with many of the same nurses and Dr's, all of who know B's quirks and could care for him accordingly.  I am certainly missing them all already!

Braeden wasn't at all impressed with it all and cried most of the way down the hallway (do you think he knew?).  He's got a much bigger bed now and a really nice big, private room. No more roomies at all.  We had a rough transfer because the RT (Respiratory) at the PICU was arguing that the flow was coming through the nasal prongs when the nurse was saying to her, "I don't mean to doubt you, but I do!".  I was really ready to freak out because I knew it wasn't so and I knew he was going to crash any minute.  Sure enough, B used up all of his oxygen reserves and CRASHED.  The nurse Sharon was great, she asked for a mask and when the RT assistant didn't move fast enough she told her, "NOW".  He came back up on the mask but the RT still swore it was because their machines were different that we couldn't hear the flow.  I sat with him trying to soothe him as he was rightfully pissed at not being able to breathe and kept the oxygen mask close to his face.  He was doing okay but not great when the RT assistant did something and Braeden then got a shot of water up his nose!  If he wasn't really mad already....sheesh.  I told her whatever she did made it work momentarily and she did the same again and SHAZAM, the kid had flow!  I was VIBRATING at this point!  Mike kept telling me it was okay but I was doing some serious deep breathing at this point!

Aside from the drama, he did manage to settle in once he got his oxygen, (surprise, surprise) and got to be cuddled.  The nurses there are a bit louder than we are used to as well and I had to (not so subtlety) say that he doesn't like loud noise or bright lights (so SHUT UP already!). It is funny too how each side thinks that they do things better, I don't care who are the better nurses, just do whatever it takes to make Braeden happy!

The expectations of the PICU staff also seem to be that I'll be there all the time, this is not humanly possible.  I am going to try to be there as much as I can but even that doesn't seem like it will be enough.  Braeden needs entertainment now (he'll be 13 weeks tomorrow) and the nurses have two rooms to watch, not just him to entertain.  To say this stresses me out, well if you've read any of my previous entries it will be pretty explanatory.

I did however get to give him his first bath (for me and in the PICU) two days ago so that was wonderful since he loved it.  One of the things about the larger cribs too is that I can lie my head next to his and we can just look at each other which is so sweet.  We still have no idea on the next surgery date as the Plastics guy is away next week too but it should be within this month I would think.  I am still not 100% sure if it will be the mandibular distraction or the tracheotomy but it will be something.  The Dr I spoke with yesterday at the PICU seems to think it will be the trach as she's not certain the mandibular distraction is even on the table anymore with the size and shape of his jaw.  Most kids excel with the mandibular distraction if that is the ONLY issue they have...not if you are Braeden in other words.  We'll see.  To be honest the trach freaks me out, it is a big step and it is certainly not short term.  I can't see how we'll keep him from taking it off since he pulls out anything else they attach or put in him.

We are in for a big month this month, not things I am looking forward to by any means.  Braeden's move is done, check, but we still have many changes.  Torin's contract with FSCD (Family Services for Children with Disabilities) ends after three years of the same fantastic therapists (sniff, tearing up here because they really are a part of our family).  It will certainly be a huge change for us!  Another huge change is that my Mom is flying home this week (yikes) and I'm going to be responsible for running all of my household again.  I'm not certain how this is going to work so just FYI for anyone coming over, my house is probably going to be a disaster zone!  I'm sure I can keep it so Health Canada doesn't shut us down but barely.  We are also waiting to find out later this month (as per the previous paragraph) what surgery option Braeden will have to open up his airway.  I guess there is also some day in the middle of this month that should be mentioned but I don't have the energy to care about it other than to send cards with the kids to school (no homemade ones from my house!). 

All in all we are in for one HELL of a month, feel free to bring coffee or chocolate by anytime!


Anonymous said...

Lia, Thinking of you! Wow! My 3rd son was born early at 1 lbs 10oz. We spent 4 1/2 months in hospital and 2 1/2 was at Vancouver Children's hospital in the NICU. It is the hardest thing to deal with. So many ups and downs. People often ask me how I managed as a teen mom and it is no comparison. I would not wish this on anyone. Please know I am thinking of you and sending you strength and love.
PS I am a donor too! hugs xoxo

Lia said...

Thank you so much for your wonderful note Moya! Hearing people's success stories are what keep me going most days.

Yay for you for being a donor! :)