To Clot or Not??

Okay, so it's been a whirlwind of a few days (yet again).  We never ended up getting the oxygen tent, he calmed down and kinda made okay with his pharyngeal tube.  He did okay with it for the first bit and then the Dr's got an idea from the ENT about splitting the tube and then putting the nasal prongs in it.  I should have taken a picture because I'm sure I can't describe it all that well.  Basically with the first tube it went down his throat but stuck out his nose a good four inches or so, what they then did is cut it off, split it open (in two) and taped those to his face on either side thus leaving a 'hole' in his nostril.  He was certainly happier with this arrangement and the nasal prongs did kinda fit in it (one in the 'hole' and on  in the second nostril), and his oxygen levels were doing really well BUT he decided that he would hang onto his CO2.  When I went in yesterday morning to find out about the new tube he was sat-ing well with his O2 but his CO2 was 120 when it should be about 30.  Not a happy baby and can't say I blame him.  SO, the Dr wanted to go back to the old tube (sticking out four inches) and I asked if we could please try the regular C-PAP again.  She agreed to try it out and he got it on and settled right down.  Yay for Mom!  Now for those of you that have been with me since day one you might recall that he wasn't a huge fan of the C-PAP at Foothills but I think that given the alternatives he was happier.

He had a 'good' night on the C-PAP and his CO2 came down into the 60's (which for him is good).  When I came in THIS morning his room was full again because he'd been struggling with the mask of the C-PAP so they switched him over to the nasal prongs (still C-PAP).  Braeden also lost his cook catheter over night (his last central line), the line into through his arm feeding into his chest.  Thankfully he's done his six week stint of antibiotics and he is now hopefully able to handle regular IV lines again (come on veins!).  We had a nice hold and cuddle and his nurse had a two hour meeting she needed to attend so we agreed to put him back into bed and get him settled so she could go to her meeting and I could go and pump (not to worry, there was still another nurse present). 

Let's go back to yesterday...
They've had B on Midazalam for the past few days just trying to keep him settled because when he freaks out he gets starved for air (resulting in a not-so-pretty shade of blue or purple).  Yesterday he got a dose to get him through his ultrasound since it was going to be a long one.  They did the ultrasound of his abdomen and his neck to check out those lovely clots and it takes about an hour to complete.  As he was laying through the ultrasound I was beside him so he could suckle on my finger (doing our OT exercises!) and I noticed he started twitching.  Once, twice, pause again.  Twitch, twitch, twitch...hmmm, could you please stop because I think my baby is having a seizure!  Went to fetch his nurse and Fellow (Dr) and she confirmed seizure activity.  Now at this point I was close to losing it, it has been weeks now since a seizure so it was not cool to see again.  They drew up the phenol barb (anti-seizure meds) but didn't administer it because he stopped.  The Neonate Dr came in to see him and said that the Midazalam can also cause seizure activity...Fab-u-lous!  I was pretty much fried by that point and to have all the Dr's and nurses looking at me waiting for me to lose my shit certainly didn't help. 

Back to today...
Instead of the Midaz to calm him his nurse gave him a new drug (sedative as well) before her meeting.  Drug was given, nurse left and not two minutes later all hell broke loose.  Braeden freaked out, back arching, ripping off his mask, turning blue then purple and me alone in the room trying not to panic.  I left the alarm ringing to signal that I needed help (one usually turns off the alarms because the constant ringing doesn't help with the nerves in a crisis), and a nurse came in. "Everything okay?" (alarms ringing keep in mind)  "You mean aside from my BLUE baby????"  It took three of us an hour to calm him down.  His main nurse was gone to her meeting...a meeting in which the Neonate and other heads were attending too...lord love a duck!!!  The nurse that was left to help out was a seasoned nurse but she didn't exude much confidence which really doesn't help a parent who is about to freak out too.  Needless to say my nerves can't take much more these days, they really can't.  I had to actually walk away, I wasn't sure if I was going to scream, cry or punch someone.  I ran into the Neonate coming back from the meeting and explained he'd been FINE till he had that new drug.  She believed that it was too fast of a turn around for a drug reaction but also said with Braeden, anything is possible.

Back to yesterday...
I met with the Plastic's Dr, nice guy with some fancy clothes!  He was pretty confident about Braeden being a candidate for the mandibular distraction surgery.  He did want confirmation from the other powers that be though and an MRI of the jaw to confirm that B doesn't have any other 'surprises'.  He went through the possible side issues with the surgery, like nerve damage, scaring, damage to the tooth buds, etc.  All in all, this surgery is actually more major than his heart surgery just a wee bit less scary as it doesn't involve a major organ.  We talked for a bit about the pros and cons and to be honest, the surgery doesn't freak my out as much as a tracheotomy.  When he left we had a tentative date for surgery for next Weds.  I was so stressed yesterday that I came home and was in bed by 8:30.  The biggest fear with another surgery isn't the surgery itself it is the after.  Being as his last surgery almost killed him, I think my panic is somewhat reasonable.  It was all I could think about yesterday and this morning, were we making the right choice??

Back to this morning...(before the crap day)
When I got in (after B got settled for the cuddle), Dr.Boulton (Neonate) came to talk to me and confirmed that she too felt like we were rushing to fast into the surgery.  They 'powers that be' were supposed to meet this afternoon and they couldn't get their schedules to coincide (a sign maybe??) so they weren't going to meet until next week.  I felt instant relief and expressed this to Dr.B, I too realized that I felt we were rushing forward.  So for now the surgery is still going to go ahead but we are going to approach it more cautiously and look at doing it in three weeks instead of one.  That way too we can get all the ducks in a row and be confident that we are making the right choice.  Phew.

The INTERESTING part of my day is the ultrasound results.  You were just waiting, I know!  The ultrasound tech did NOT find any clots yesterday in the liver OR the neck.  Now, I want to be excited, don't get me wrong but until I hear from the MRI that his neck and head are clear I'm not doing a happy dance just yet.  Maybe the blast of 10x's his meds worked in his favour???  For the nurse's sake let's go with that.  He is now off the emoxiparen (anti coagulant), one more drug off the list.  So I'm counting it as a victory for now, albeit a small one this is Braeden afterall!!!

I know this blog post is a bit all over the map but it is kinda my mental state at the moment not to mention I am well aware that I'm not the easiest person to live with either!  Small victories, I didn't lose my shit but I did know well enough when I needed to leave the hospital and just breathe so some of my mental state is still intact, yay.  Braeden is still on the C-PAP for now and has not had to be reintubated just yet, yay.  The big news?  Mr. B got his first bath tonight, he only had to wait just shy of 11 weeks for it!!!  YAY for Mr. B, he loved it.  Sad part? Mom wasn't there (or told ahead of time) and the NICU camera isn't working...SIGH, tomorrow is yet another day.

C-PAP