clarification, team work, and very sad days

to clarify for you what was clarified for me since my last post, it's not so much that Ford's oxygen requirements need to get back down to room air, as it is just that he needs to be off the high flow before we can go back upstairs. they can provide oxygen/low flow upstairs, no problem, they just don't do the high flow. got it.

and friday morning, after 24 hours of being on the low flow, someone made the call that he was ready to move up. when i arrived at 9am, the nurse was packing his things and i, excited, finished the job. packing his things mostly means piling them on to the end of his bed in a heap of blankets, clothes, toys and books. when the doctors came around for rounds, the intensivist said "so this young man is going upstairs today - is everyone happy with that?" and there i saw at the back of the crowd Dr. Human shaking his head emphatically - "cardiology is not happy". phooey. (Dr. Human was also rocking on his feet back and forth and sticking out his chin before talking, as he always does, and as i quite like observing in him). seeing as Ford has been back and forth with the ol' high flow, "cardiology" felt that he should be given the weekend to prove himself on the low flow before going through the transfer process. fair enough, though i was disheartened and only unpacked half of Ford's things, committed to getting out of the ICU soon. "monday" they said.

however, all of friday day and night, Ford was incredibly irritable and unsettled, and saturday morning, Dr. Human suggested it was the work of breathing that was upsetting him so. therefore, moments later, Ford was back on the high flow. sigh. the intensivist suggested an echo as well, in case the irritability was due to heart failure. gratefully, the echo didn't find any trouble. something about checking the coronaries. must learn more about that detail as, apparently, according to nurse Declan, the coronaries will always be a concern for Ford, well past his third modification surgery. perhaps this relates to why 20% of HLHS kids die from heart attacks in their teens. note to self - look it up.

by this morning, Ford was less irritable, but still not entirely his usual self. by this evening, he was finally catching up on the sleep he'd missed the past few days while he was being awake and grumpy and had been asleep for 6 hours when we kissed him goodnight.

Dr. Human is going to meet with "the team" tomorrow and make a plan for Ford. specifically, decide when they think they could do the Glen procedure (stage 2 of his 3 stage heart reconstruction) and how much weight they want him to gain before then. he doesn't think Ford is going to get much better at breathing on his own until his heart has a little less work to do.

which makes it seem like we won't get to go home before the Glen . but that's a question to be asked post team meeting.

the ICU was a very sad place today. i don't know the name of the little girl that died, or how she died, but i was in the pump room when the mother called her own mother, just on the otherside of the pump room door, and sobbed/screamed "she's gone, she's gone". the deep pain she was in, that agonizing cry, so quickly recalled the crying i've done for Emmett. i know some of you readers have lost a child and you know well the sound and depth of such crying. i wonder if the rest of you can truly imagine it. watching the door to that little girls room all afternoon, as family arrived and took turns going in and out, had me thinking of the events around Emmett's birth and death. it was very moving to see that girls family gathered in the waiting room and my heart just aches for them, and for Emmett. my heart just aches.

it's very hard living at the hospital, needless to say. Ford is 3 months old this week and looking around at the kids in the ICU who have been there 2 years, it's daunting to think of how much more time we may have there. but hearing that mother today, and thinking of Emmett, i'm grateful that Ford is here, in all his medically enhanced glory, and continue to dream of this being in the past, and Ford being home.