I was so excited to post our news yesterday.
I'm equally as disappointed to report that we are back in the ICU as of about 2 hours or so ago.
I got back from work (which I hated to go to today anyway given my nervous of her being more "alone") and she just didn't look good to me. She was sating in her low 70's and dinging into her high 60's occassionally. (most people have O2 SATs of >95... hypoplast babies with a pre-fontan heart sat 75-85... 60's are way too low) Anyway, I asked the nurse how Annabelle's went, and she said it was great, that she'd desatted just a little so they put a roll under her neck to help her get good air while she slept.
Well, the sleepiness was part of my worry. I started to eat dinner, and her alarm started to ding more. I tried to sit her up and she didn't wake up even a little. Her eyes just rolled back in her head and her limbs were floppy. I went and got the charge nurse, and then the regular nurse came in too and we tried to suction her out a little. I kept telling them that she was way too sleepy and this wasn't normal at all, so we got a doctor in there and they did a blood gas.
Blood gas was very bad. PH was 7.09 which is way too low and her CO2's were 94 which is way too high.
They called stat and the PICU people ran upstairs.
I know it's dumb, but I had this HUGE sense of relief this time when people ran into the room. Usually I would be scared out of my mind, but these people are the ones who have been caring for Annabelle for almost five months. They are familiar to me, they know Annabelle better than anyone except maybe me and definately God, and I trust them.
Not that the 6th floor people aren't good too... I'm sure they are. I just don't know them yet.
So, they bagged her, brought her back down to the PICU, and the wonderful nurses on the 6th floor helped me pack up my rediculous amount of stuff and bring it back down here. They were all so sweet and helpful.
Annabelle went back on CPAP and we took another blood gas just about 5 minutes after, and it was much better, but still not great. Going to take another one in a bit.
We aren't sure where this leaves us yet. Talked to the surgeon's nurse and she said we'd talk about it in rounds tomorrow, about a "plan" for next steps. The question now is: do we try a 2nd time for the floor and home once she's off CPAP/vapotherm again... or do we say that we aren't getting better due to her heart and try for the Glenn surgery.
I have a feeling they will want to give her one more shot to make it until Spring, but I'll know better tomorrow.
Tonight, to be honest, I'm a little numb. Part of me wants to laugh because it is just another page in Annabelle's very eventful life so far. Except for the fact that we were on the floor this time... we've been here and done all this many many times before. Part of me wants to cry because I feel the hope of being home for Christmas sliding through my fingertips. I feel disappointed at this yucky step backward when we had made such a huge leap forward. Part of me wants to yell and scream that this is so totally not fair and that we should not have to go through this.
And another big part of me just wants to fall on my knees and beg God to please please please have mercy and make this all better and remind him of how I can NOT handle anymore of this.
And yet another part of me knows that the "right" thing to do is to give it all to God and surrender to whatever he has planned and say, "I will serve you and glorify you God, even now. No matter what."
I'm so glad God understands the stages of "handling" things... and I'll get to the final stage. I'm mostly there already, just... yeah. It's just very disappointing.
God is still good. Even now.