transcended.net

Sorry for leaving you hanging like that with the last post, the hours have just been slipping away from me between pumping, sleeping, eating, going to the NICU, feeding and snuggling with T.

Last Wednesday he had another dramatic turnaround, this time in the good direction. As suddenly as he went into what one of his doctors actually referred to as a coma on Sunday, he came out of it two days later and has been getting better and better every day since.

Amazingly he is now taking feeds by bottle, all his lines are out, he looks and acts like nothing at all out of the ordinary happened last week. One of the neos during rounds last night called him a miracle and I can’t argue with that.

So thank you all so much for your prayers because I’m pretty sure they worked! The doctors admit they did nothing to treat him, other than to support his platelets with transfusions and WBC with the GCSF shots. His recovery is the work of the one true healer!

They do think they have a partial explanation for what happened to him and it is not their original theory about my meds, though it’s still possible the meds played a role. They found my antibodies in his blood and believe that they caused something called Macrophage Activation Syndrome, in layman’s terms, my stupid antibodies confused his macrophages (which are like garbage collector cells) which went haywire and started “eating” everything including healthy tissue, i.e. his poor little liver. This caused his platelets to be constantly burned up trying to protect his liver from bleeding.

I’ve been trying to write a daily record of each day in the NICU, what happened procedure/test-wise, what his numbers were like, etc., mainly because I’m anal and feel like there needs to be a record of it (I’ll probably ask the hospital for all his records but I’m assuming there will be a lot of medical jargon I may or may not understand). Also, it’s really the only way I can capture the ups and downs we’ve had so far over the past 2+ weeks. If I ever finish it (while I can still remember everything), I will publish it here.

Continued prayers would be appreciated, we need his platelets to continue to hold steady or go up without transfusions, his WBC to hold at a normal level, his liver enzyme tests to continue to go down, he needs to take all his feedings by bottle and regulate his own body temps before he can go home!