Well I certainly had a craptastic day today watching my son turn many different shades of blue over a 12 hour period. We seem to have taken yet another step backwards here which would explain my bailey's/hot chocolate, heavy on the bailey's (it is -39 windchill right now!).
Braeden has had issues over the past few days with maintaining his oxygen and he has needed more support because of it. He is seemingly 'fine' until he gets upset (which has been happening often) and then can't breathe. One can only assume when one can't breathe, one panics which in turns means now you really can't breathe...etc. Because of his increased need for support, they did a chest xray today to check out his lungs and they were thankfully unchanged from last week. He also doesn't seem to have any major secretions to see either so this leaves us with the explanation that he is getting bigger (yay for growth) but his body's system isn't able to support it yet. He has been on his nasal prongs for a few weeks now (since Christmas day) and has been doing okay on them but any time they have tried to wean him he's gone into respiratory distress. The number one problem with the nasal prongs is that he hates them, he hates having anything in his nose (I can relate) period. I can't tell you how many times he's ripped out his nj tube (nasal feeding tube) so the prongs don't stand much of a chance. He had been doing better being in a prone position (tummy) with the tongue falling forward leaving the airway open but that hasn't been working the past few days either.
So, the first step with the Pierre Robin's Syndrome is the nasal pharyngeal tube. Essentially a tube down the nose to the top of the throat (no interference with the vocal cords), that keeps the tongue forward and gives an open airway. They opted to try this approach today, needing to do something since we'd all rather not reintubate if we can get around it. Needless to say as per my first sentence, it didn't go well. The plan was to insert the tube and maintain the nasal prongs...now keep in mind he also has a feeding tube in his nose...nope, not gonna fit. So they hooked it up to the C-PAP machine to give constant pressure/air down the one nostril....did I mention he hates things in his nose??? To say he was unhappy would be to say it is summer weather right now, NOT. It was HORRIBLE, absolutely terrible to have to watch. I finally had enough and told the Dr I was going to put him to the breast to at least offer some comfort (keep in mind I'm not supposed to be nursing him but I was at my wits end). Being that Dr. Bolton is wonderful she agreed. He was instantly soothed (damn it is frustrating when mom and babe both want to nurse and can't!!!) but it only lasted 10 minutes before he was angry again. Of course it didn't help that the ENT Specialist chose that nicely settled time to come barging in with his baritone voice to talk to me. Finally Dr. Bolton (told you I like her) told him to go away, he was upsetting Braeden too much! Unfortunately he was back to inconsolable and right pissed off. He got 4 doses of Midazalam (Valium essentially) to calm him but it didn't do much good. The Dr figured we could have downed a baby elephant but NOT Braeden! The problem is that you can't sedate them too much, then they don't bother to breathe anymore! We finally got him somewhat settled with laying him on his side with the nasal tube still in but also with the constant flow of oxygen from an oxygen mask beside his face. Basically the biggest hurdle is that Braeden is a mouth breather and has been since day one. Babies aren't supposed to breathe through their mouths, they are supposed to only be nose breathers but Braeden likes to be 'different' (aka difficult). Unfortunately what this means is that the tube is essentially useless to him. There isn't much point forcing air in his nose if he is just going to open his mouth and let it out (which is what they have been struggling with since birth). When I left tonight his nurse was arranging to have him fitted into an old-fashioned oxygen tent and they were going to remove the tube. The Dr figures that since he is breathing through his mouth (and is seemingly able to do it consistently) that if he is put in an oxygen rich environment he might just flourish there. Now the big question is how long can he be in here? Each time he is assessed his oxygen levels will drop because the tent is opened and such and how happy is he now going to be without being held? I don't know and nor do they. It is however a better option than reintubation (which could still happen before this day is out).
The big news (and again, not great news) of the day is that because of all of these new developments we are most likely looking at surgery yet again. Braeden is going to be assessed by Plastics Wednesday and he will then decide if Braeden is a good candidate for "Mandibular Distraction" surgery. (I found a useful link but if you are going to open it and follow the little boy's story note that the pictures are a bit hard to take at first) http://www.pedsent.com/surgery/swfs/distraction/distraction.htm Basically, sorry if you are queasy, the surgery cuts apart the jaw and fastens screws into it. Then over a period of 7 days or so the jaw is stretched and forced to grow essentially. There are other alternatives of course, one being that we wait the next 6-9 mths in hospital for his jaw to grow naturally (they usually 'catch up' eventually) and try to keep him oxygenated for this time OR a tracheotomy (which is 12-18 mths of yikes!). Not great alternatives eh? Insert expletives as needed or more bailey's (it is cold after all). Now don't you worry, I have over a thousand questions too about whether or not he'll be a good candidate. All of the swelling left is still in his face/jaw and there is the little issue of these damn clots and why they are there in the first place. We are having an echo cardiogram (heart) done tomorrow as well as ultrasounds of his liver and neck (both clot areas). These will hopefully (fingers, toes, arms, legs, hell! anything crossed) show us that there has been improvements. I'm not holding out too much hope however at this point, not because I don't want to believe, it is just that nothing with Braeden goes as planned. So, tests tomorrow and an evaluation from plastics Weds, yuck.
Did I mention at all in the past 10 weeks (happy 10 week birthday today baby), that this kid needs a damn break??? SIGH, certainly not in the most positive frame of mind tonight, even the bailey's isn't cutting it. At one point his nurse today looked up at me as we were on alternate sides of his bed trying to soothe him, and said, "you are one strong woman". I was caught off guard, and said, "excuse me?". And she laughed and said, " you are just going through this". My response? "Yeah, don't worry I'll lose my shit later!". Eh, Braeden gets his Midazalam tonight and I get my Ativan, we are certainly both should be headed for a mellow night tonight, (if only).
Tomorrow is another day and one that will start with having to explain to my darling 5 and 7 yr olds why I was at the hospital for 12 hrs yesterday and why I will be doing a repeat today. Good thing they love their Mommy and an even better thing that they've got a Grandma here to care for them so said Mommy can be off at said hospital. It doesn't seem to get any easier, even though we've been at it for 10 weeks now (13 weeks if you count the time in hospital first). It doesn't seem to matter where I am, I'm usually not in the right place (or so I feel). Guilt is certainly a useless emotion but one that cannot be controlled when you are a parent (or so I find). Sadly, no advancement on the cloning yet. However! I did see a program last night (gotta love late night pumping) about a guy who spent 10 years and $100,000 to clone his dog...maybe there is hope for me yet?
On a happy note: HAPPY BIRTHDAY to one of my favourite sisters (yesterday!)!!!