At some point in life you inevitably find out that nothing in life is a guarantee but, that in no way prepares you for this roller coaster that we all ride of life.
We went from feeling somewhat hopeless/helpless (yesterday) with an omg, my baby's heart isn't working how it should, to an 'ahhhhh' angels singing (today) to a good response to meds and 'wow' onto a new ventilator! We had a 'no good, very bad' start to the day yesterday with Braeden going into two additional tachy's (7 in total in just over 24 hrs), that were both needing extreme interventions. In the initial episodes they were able to snap him out of it by using the shock of an ice pack to his face. This was enough to startle him out of the tachy mode and back into a normal-ish sinus rhythm. They actually will put the ice pack over the baby's mouth and nose to make them grab a huge breath if they are not intubated...I know right?? Luckily with the earlier episodes, the ice on his head was enough cause ya can't really block off a ventilator. The two episodes yesterday morning however got progressively worse and they had to intervene with medication that goes into an IV followed by a rapid push of saline to get it to the heart ASAP. He was in the tachy modes for 4-5 mins each time which may not seem like a long time but when his blood pressure bottoms out at the same time it would be more of an eternity (thank goodness I was not present during either episode or I might be in a padded room tonight). The Dr explained to us last night that there are kids that stay stable during an episode and they will let them go for 15 mins before trying to intervene but then they have the 'unstable' cases (ie my sweet boy) in which his body goes into a critical state when the oxygen intake and the blood pressure both drop dramatically. THANKFULLY they started him on the baby version of the heart meds that I was taking for him while pregnant and they seem to be working.
We've now gone over 24 hrs without another episode (fingers crossed so tight they are falling asleep). Now add crazy, post-baby hormones on top of this and this would make the great mixture of one stressed-out-Momma. The wonderful thing is that I got to spend some time with just Braeden and I as his nurse went on break (there is always another 5 steps away), and we got to just chill. My hand on his head with my other on his feet and we just got to 'be'. The amazing part through all of this is that he really does seem to know when Michael or I are 'holding' him and they can always turn down his need for oxygen when we are with him. Yup, he's a genius. I feel so calm when I'm with him, he soothes me in a way that can't be explained (other then when they are poking and prodding him and I have to leave the room). I am struggling constantly with the guilt that I'm not spending enough time with him and it doesn't matter how many times I'm told 'take care of yourself first', because what Mom in her right mind does that right?? ;)
T and Ry are still struggling as well, there are emotions that come out of seemingly nowhere, (like "I am crying because I couldn't hang up my coat properly"). I know that they are also requiring extra reassurance that I will come home each time I leave. T panics when I say I'm going to the hospital and insists he needs to come each time. This too will get better, I know but it is still hard to know that they are feeling insecure about Mommy's whereabouts and stability in the home.
SO! We had a pretty good day today aside from the fact that there were no more tachy episodes. They knew Braeden had a leak in the ventilator in his throat because when he cried we could hear him 'squeaking'. They had him on an oscillating ventilator which, to my simple understanding, pushed air in and vibrated his body non-stop to help the stretching of the lung tissue and spread out the oxygen through them. He could still 'breathe' on his own but essentially the machine did it for him, and forced him to take the breaths. They figured since they had to change out his tube anyhow (as the leak was in by his vocal cords), that they would try him out on a typical ventilator first then put him back on the oscillator if needed. The amazing thing is that he took to the new one quite brilliantly! The new ventilator makes sure he takes breaths 40xs a minute but also if he wants to breathe on his own (which he seems to be doing a bit more of) it doesn't force the air in for him, it allows him to take that breath himself. (I mentioned genius, no?) This ventilator also allows more freedom in his positioning as it isn't nearly as stiff and unmoving as the last was. He is still quite sedated as he needs to be with all the lines going into him, but he was 'stuck' in certain positions with the old one that he won't need to be now.
The other good news is that they've managed to wean him off another of his heart drugs and he seems to be handling it quite well. It is nice to see another 'floor' of the 'tower' going dark. I had to laugh tonight when Karen came into see him (the huge benefit to wearing scrubs and working across the hall, and yes, she's allowed to brag as she is one of the very few people that will get to meet him before he is released). She commented that she didn't think it was a literal 'tower' of drugs when in fact it is a stack of different meds (each in a syringe mounted on a small computer), one on top of the other, that are programed to release a dose at the proper intervals. Pretty freakin space aged actually. In fact his whole set up is pretty damn impressive, I can't imagine having to face this even 5 yrs ago.
The visit that Michael and I had tonight was quite wonderful, he was snuggled into his new non-vibrating bed and seemed quite peaceful. I would think that I'd be enjoying the non-shaking bed too! He almost seems like he might be able to open his eyes soon as long as the swelling keeps going down. I was showing Jenn M. pics today of him and was quite surprised myself at the physical change in him in the past week. I can see that the swelling is receeding and that is so encouraging. With the addition of putting him on the new ventilator we are one, albeit small, step closer to holding out sweet, sweet boy. And THAT makes one stressed-out-Momma wanna sing!!