This is what torture feels like.

Update: Nolen's on 40% oxygen, he seems to be holding his own for now, but I'm starting to notice him slowly losing his high levels for lower 90s. All his initial labs are good, we are now waiting for another 48 hour period for the Spinal Fluid cultures to rule out bacterial meningitis.

Edited update: Nolen is still not waking to eat, he is in a very deep sleep so his fluids have been increased and the nurse wanted to see how he would do using a bottle with breastmilk. I am SOO excited about this. I can pump and will pump like a champ just to keep it where he can have frequent little feedings and get some of those yummy antibodies and lots of calories!

If you wish to keep viewing me as some strong amazing woman...don't read any farther...but I am tired of being strong.


              This has got to be what it feels like to be tortured. I have sat and watched and comforted and nursed and talked to this sweet baby child of mine for what feels like a very long and endless day. I have learned the patterns of his illness, I can see the downs coming from a mile away...I can almost predict them...and as much as I can scream it out loud, shout it out to whoever will hear...I have to sit and wait until he gets far enough down for them to push him back up. At the beginning of this very long day, I could hold him and comfort him and know that it was working...I could see his numbers go up, I could feel his breath slow, his heart ease and his body relax against mine and know that I WAS DOING SOMETHING, but now I sit here and just watch knowing that not even my touch is helping. God, how you must have felt with your son on the cross...binding your own hands and letting it happen, watching it happen, and not being able to do anything because of your love for use. I feel like all we are doing is buying time until something extreme has to happen...and I really would rather skip the buying time part and DO SOMETHING that is going to stop this very slow very cruel decent.

Nolen is exhausted. He was poked and prodded and examined today. He's had a spinal tap, a cathater, multiple sticks to get minute amounts of blood and he's spent. His core temp is low, he isn't waking to eat, he isn't eating, he isn't opening his eyes when I talk to him, he hasn't even attempted a half smile. He just lays, and lays and lays as his O2 levels drop slowly to a level where they end up upping the oxygen, and his lack of interest in eating leads to fluids being upped, and his body temperature has led to him needing a hat and socks and clothes and multiple blankets to keep warm when before we were stripping him down naked. His heart rate has dropped a couple of times today, his breathing has stopped for extended periods of time today, he has desated many times today.

There are no answers, no explanations and I have to keep telling myself to wait it out, to wait it out...but I am Oh so tired of waiting. I want to take his pain/discomfort/fatigue away. Put it on me, let me carry this burden for him, and I can't. I want to ease his pain/discomfort/fatigue...if it means that I sit stationary for another two days in the same spot and only get up to pee twice...I will sit...forever and never get up and just stink. Instead of people asking me what they can do...I wish someone would tell me what I CAN DO, because I just don't know anymore. Someone please tell me what to do.

The highlight of my day was the moments I spent reading to him, and watching his eyes flutter open momentarily, seeing the glimpse of baby blues and knowing that he somewhat aware of me. Of that moment when, after getting his hair washed from his brain ultrasound, he turned and he looked at me...he found my voice and he found me. I just want to reach out to him, heal him, comfort him, love him, hold him, assure him...

I am doing all I can, I just wish it was enough.

Updated at 1 am: I am doing much better  now, I went and ate a delicious meal while listening/singing worship songs to Nolen. Once I calmed down and found myself less frustrated with everything, I fell fast asleep while sitting up and finally woke feeling pretty refreshed! Thank you for bearing with me.