Tuesday, 24 January 2012

My Enigma

New two week run, new Neonatologist Doctor. 

C-Pap rigged up to stay by Trish
I came in yesterday morning knowing Braeden was due for an MRI that day what I wasn't expecting was the new Dr telling me that he would need to be intubated for it.   I asked what on earth for (as he is currently mostly stable on the C-PAP) and he explained it was for his safety, to keep an airway open.  You cannot take the C-PAP in the MRI room as it is metal (the machine) and an MRI is a huge magnet.  I asked why they couldn't just put him on the high flow prongs (nasal prongs) for the test like they had him on last time.  This is the frustrating part about switching Dr's, he 1) didn't know Braeden had even HAD another two previous MRIs and 2) didn't know he'd done one on nasal prongs.  Why on earth would you intubate a kid just for the test?  YIKES!!  I know he was making what he thought was the best decision with what he had (and in his defence B's file is HUGE) and his decision was based on not knowing how B would react with the test (MRIs can take awhile).  I explained he actually enjoyed the MRI last time because he gets bundled in a 'pillow' of sorts to keep them still and calm.  SO, Mom saved the day (yup, toot toot) and he got to go in on nasal prongs.  The MRI was scheduled to take a look at his jaw and area to assess it for surgery andsince they were doing it I asked if we'd look at the neck/head clots as well (especially since they didn't see any on ultrasound).  We didn't have results by the time I left in the afternoon so when I got back that night the Dr was off (they do 7-7) and the on-call Dr wasn't available.  I was told by the charge nurse that I would have to talk to the Dr in the morning about it.  Red Flag 101, if you have to talk to a Dr, something is on the results.  I assumed that it was in regards to his neck clot and went on to have a reasonably good night.  Michael and Braeden FINALLY had a good long cuddle without B freaking out so that was very nice to see.

Braeden, Squeak, Mr.B, Baby B, B, etc. has the Dr's once again scratching their heads and once again it is not in a GOOD way.  I arrived this morning to find out that they had Mr. B scheduled for a CT scan.  Wha?  Apparently they didn't get a good enough look at the jaw with the MRI, why contrast wasn't used I'm not sure as I signed off on it.  But CT is better for looking at bone structure whereas MRI is more for soft tissues.  Okay fine.  I listened in half-heartedly during 'rounds' but was paying more attention to Braeden than really listening.  The new Neonate Dr (I can't remember his name!) came in to talk to me and asked if I'd seen the MRI results.  I said no and he told me it was easier to show me rather than draw a picture...uh oh.  He pulled them up on the computer in the room and proceeded to show me two sub dermal hematomas.  Braeden has had two hemorrhages sometime in the past 14 days (since the last MRI) at the front of his head.  Now they are not in the brain, these are not further strokes (that is the good? news).  The hemorrhages happened between the brain and the skull in the dermal layers there and there is some swelling around the brain but it is not severe (bleeding causes swelling, swelling can cause more bleeding....etc).  His plates of his skull are not gaping open, they are still close together so that is another good sign that his brain isn't under much increased pressure.  So what does this mean?  To HELL if I know! 

The Dr gave me nothing, no ideas of why, just that they didn't know.  How's dem apples?!  He was very kind about it though and did go get me some klenex when the tears started rolling.  What a great start to the day!  They had called a transport team to come for the CT scan but had only had short notice of the time so the nurses were scrambling trying to get things done but not completely sure of the protocol.  We have a (very nice) Sub for the the NICU manager who is away for two weeks (at a conference in Florida, I'm jealous Kerry), and RT that I've never seen before yesterday who hasn't done a CT at ACH yet and our nurse who I've never met.  Lovely Barb (who was supposed to be our nurse but got switched to a more severe case) came in to do his IV and it was done lickidy split without much fuss (she kinda has a crush on Mr.B).  Thankfully the transport nurses actually were able to make it and I was happy to see them as they were the nurses that transported him to his surgery in Edmonton.  Jan and Jaime are both wonderful and I felt more at ease with them both there.  They got him ready to go and we got a call to say the CT techs had gone for lunch...wha???  Here we have a crabby baby that is NPO (no food before test) and is ready to go.  I told Jaime that if they needed me to go down there and converse with them I would be MORE than willing to!  Plans changed and we were about to head out the door when Jan realized that his IV was out (little turkey).  No time to put in a new one, so off we went down the hall to CT.  Jaime then got the fun of trying a line in his head (picture him bundled up completely so he can't move and therefore has no appendages sticking out), line in and baby was put on the table.  Line out.  Frick!!!  Unbury a foot and line in, fingers crossed and recrossed it would last.  Of course all of this for a five minute test if that!  CT done and a very dopey baby and I head back to our room.

Mr. B and I had a really nice snuggle after the CT because he was so dopey and I could just kiss his little cheeks as much as I darn well wanted and he didn't care.  It was what I needed, a little cry, a lot of kisses and a good squeeze of my little man.  I was hoping to chat with the Neuro but no such luck today.  I did enquire to the Neonate to how it is we don't know if he is having hemorrhages anywhere else and he told me his sats and blood pressure would be noticeable, not to mention the nurses should pick up on it.  Like we all did with the cranial ones???  I did have a better afternoon though because Barb and Dawn (the dynamic duo) made me laugh with their brash (Barb) sense of humour and hilarious stories and fed me a muffin.  I will certainly miss many of our nurses when we transfer to the PICU in the next week or two!

I came home for a few hours to make dinner, feed the fam, put kids to bed and such before heading back up to the hospital (you don't want to know how much gas we are going through!).  Braeden was somewhat settled when I got there but Cheryl (night nurse) felt he could use a cuddle so we pulled him out.  He took a minute to settle and we got a short cuddle in but he just kept being unsettled which in turn sets off the C-PAP because the slightest movement (and annoyed babies move) the seal around the nose gets loose and you lose air pressure.  So it was not a good night for a cuddle but I did shower him with kisses again, just to annoy him a wee bit more.  I was happy that I went back up though because one of our older Neonates was on call for the night and I got to see her.  She told me that her thought on the hemorrhages was that they could have easily been caused by back flow from the blockage in his neck, which would create pressure and could easily cause a bleed.  She also agreed with me that yes, also the use of anti-coagulants can cause bleeds too.  Remember that one he had 10x the dose of?  Of course that was before the bleeds but who knows.  It could also just be Braeden.  I've decided he has "Braeden Syndrome".  If the Docs can't figure him out then I figure we'll just name it after him and go from there.  What an enigma my little man is!

I still have no answer on the neck/head clots and no results on the CT.  Squeak's neck and face are more swollen again tonight which means he is taking on fluid yet again.  He has gained over 200 grams again over the past two days so that'll do it.  We'll see what the Dr says tomorrow as he wasn't too concerned about it today.  What I don't understand is that if the clot in his neck is actually gone then what is it that keeps him swollen?  Why won't this fluid drain???  The rest of his body is mostly fluid-free now, he is even getting happy baby rolls on his arms, but his neck up is swollen.  I guess we'll chart it under 'Braeden Syndrome' for now.  The answers for that don't seem to be arriving anytime soon.

We do have a big day tomorrow in regards to B's future though, the powers that be (Plastics, ENT, Neonate, Respiratory and hopefully Neuro) are meeting to discuss future plans and if the surgery is going to be our best option.  I am terrified that they will think it is a good option to do the mandibular distraction surgery but am even more terrified that they won't.  If it isn't the surgery then it will certainly be the tracheotomy.  Mr. B's breaths were really slow today and tonight as well which isn't a good sign and he might just need to be reintubated over the next few days unless they come up.  We need some kind of intervention for his airway, that much we know.  Mike and I are not invited to this meeting (so they can talk openly without the parents freaking out I assume), they will meet with us at a later date but I am actually hoping we can crash in on the end of the meeting instead since they will all be there.  So stay tuned, we might have a short term plan tomorrow.  I'm not sure how my stress level is going to cope with it one way or the other though, I am not doing so well at keeping it together right now.  I know, I know, you all think I need to lose my shit and just get it out but I am telling you, if I let go there my not be enough glue to put me back together again. 

For now at least I can hope for a few hours of sleep.

A big thank you to April for her blood donation on the East Coast and to Jodi for going in to do her plasma donation today in Braeden's name!

1 comment:

Anonymous said...

Lia, I am so sorry that your family is going through this battle. I can't even imagine how you are coping with this. You are incredibly strong. I wish I could just give you a huge hug. He is one lucky little boy to have someone as strong and dedicated as you are on his side. Please know that Braeden is in my prayers and thoughts. I hope that this meeting of the Dr's will be bring hope and encouraging news.
Hugs and kisses