Everyone keeps telling me I need sleep, my body keeps telling me I need sleep (although it is happy to wake my constantly as well), and I know I need sleep but here I am once again burning the midnight oil (does it still count if it is 1 am??). Can't say I'm in the best frame of mind writing at this time of day, so bear with me here. I just need to get some of this out so I can possibly sleep, at times one just needs to write out the voices in one's head.
Braeden had a good day, a pretty calm great day actually so we decided to take the boys up again tonight. They were both very excited to see him again I was happy that they would see him looking 'better'. Torin and I went in first and Braeden was quite active, having a little dance actually. T got to touch his head for the first time, so that was super special. Braeden's swelling was even more reduced today and I was even able to cup his head in my palm as he tried to peek out of one eye at me. T went out and Michael brought Ry in with him. He (being Rylie) was fascinated with everything once again and was impressing Nurse Jackie (who is beyond fantastic and we've asked her to be Braeden's primary nurse), with his questions. Rylan is certainly smitten with his little brother and even more so by his 'big' brother status!
We were just chatting and Braeden seemed calm when I noticed his blood pressure had jumped up a bit and looked higher to see his heart rate at 200. Trying not to panic too much, I pointed it out to Jackie who immediately checked him over. She wasn't panicking so I was just hanging back letting her do her thing. She held him still for a bit with her hand on his head and over his hands. He seemed content with this but the heart rate didn't really drop. She gave him about 1/2 hr before checking him over again, since his rate wasn't over 220 he technically wasn't in a tachy mode. Braeden had been a bit raspy earlier and she'd pulled out some nice (sorry for the squeamish) mucus out of his little nose. It seemed that she had to suction him again and found his little nose needed more as well as his mouth. His heart rate stayed right at the 200 level, dropping to 193 at times but not lower. She rolled him on his side a bit and he seemed content with this. We (sadly) had to head home and get the boys to bed as we'd stayed longer than we'd already anticipated and we had two tired little boys at this point. I told Jackie I would call back around 10 before I went to sleep knowing she was off shift at 11pm.
I called around 10:20 and the nurse that answered told me Jackie was preoccupied (which is NEVER what a Mom wants to hear) but then told me she was coming to the phone. Jackie informed me that after staying at the 200 rate for 2 hours they decided to try to shock him out of it with the ice. Unfortunately that didn't work so they had to use the drug into the heart on him (I cannot remember the name). He did come out of it at this point but then proceeded to go into a full tachy mode only 5 mins later shooting his heart rate up to 299. He was given a second shot which again brought him down thankfully. Jackie then told me that they were in the middle of administering a third shot as he'd started up back into 299 only 5 mins before I'd called. All of this in the hour and a half since we'd left, my poor sweet boy. They had discussed bringing the cardiologist in with the second occurrence and Jackie was pretty sure that he/she'd be called in now. Braeden already has another echo cardiogram scheduled for tomorrow so that is a relief. The good news is that his blood pressure and oxygen both remained within stable limits while the attacks were happening. That gives a bit of relief, albeit small.
The hardest part that I am having is that I let myself have that slight touch of hope and then it gets taken again. I know, I know, grasp the positives, and what do you have if you don't have hope? I'm trying but this baby is struggling and there is nothing I can do. Before all of this tonight Jackie was telling me that we were certainly getting closer to holding him, my ultimate dream at this point. We had almost two good days and then two steps back. I am trying to be patient, I KNOW they are doing everything and running every test they can, but it is still unknown why this is happening, even how it is happening. It could still be days or even weeks till we have our answers and in the meantime we are just able to stand by.
I'm frustrated, I'm tired (big shocker there, I know) but I'm also allowing myself to admit I'm also feeling scared. I've not let myself really explore this, and I won't go deeper than that but I am truly hating the unknown. It is what, like less than 40 days till Christmas? When it is said that seems a mere second in time but when you are living each day at a time it is an eon away. Where is that damn crystal ball??
SO, here is what I am going to do for all of you wonderfully, over-protective Moms (and husband) out there. I'm going to put my overtired butt into bed, I'm not going to call the NICU for another two hours and I'm not going to continue to panic (back away from the Ativan!). Tomorrow (which I suppose is actually today) is coming rapidly and I'm not going to be any good to my other two children with getting them off to school and myself off to the NICU without any sleep. If all else fails, my Mother of the Year (actually Lifetime would be more accurate), is standing by to drive her youngest to the NICU if need be.
Have they moved past cloning sheep yet??
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