friday night
another day, another week ends in the ICU. so another set of doctors over the weekend, and a new team again on monday. at this point- some fresh ideas might be helpful. isaiah continues to spike fevers- it's pretty much been an ongoing thing. sometimes he responds to tylenol, sometimes he doesn't. rarely is he without a fever, and i think it's somewhat uncomfortable for him. it also causes him to breath pretty quickly, which tires him out, and therefore kind of limits the time we can have off of the vent.
cultures of his blood grew some unnamed bug today, so he is back on heavy duty antibiotics. without seeing results on some other cultures, i'm guessing he has a bug in his trach again. these are things that make it so unnerving to be here this long- or at all for that matter. the sickest kids come here- isaiah included- and they come here with all their bugs. doctors, nurses and therapists touch scores of kids every day, and the stuff travels- no matter how many times they wash their hands. we're not sure what isaiah's cultures will reveal over time, but we're really scared of staph infections in the blood- so the big guns are out, and we just wait.
one of the surgeons that has been following isaiah's gut over the last couple of weeks came by on her way out for the weekend to talk about when we might try to feed him again. she said monday or tuesday, and she mentioned that we can't really rush it. and she also said that we look pretty comfortable here- so no need to rush. i asked her to never take cues from us that suggest we're comfortable -- we're surviving - but we aren't comfortable here. it's not comfortable to keep guessing at what might be holding up isaiah's progress, while joey tells us he doesn't like it that we spend so much time with isaiah. we've spent a lot of time here, and no matter how long we stay- we're never comfortable. she then walked slowly out of the room.... seriously though- we've participated in isaiah's care with lots of great people here, but we're never happy to see them in this context.
jon got out of chicago this evening- and was a huge help this week.
congratulations to tj and ina on the birth of their second daughter!
posted by joe @ 11:01 PM
5 Comments:
Hey Joe, maybe you guys should practice looking worried, and not so comfortable. Thanks so much for the continuing updates. It helps us to know what you are going through. That way we can better share your pain and somehow lessen it. Be assured of our love and on-going preyers. Pops
"Not every cry can be answered and not every call is from God. So it is a blessing when we can thank God for the joy of purpose in our lives and for times when the call to a certain task seems clear. Yet even when our callings seem hard to sort out or beyond our ability to fulfill, even in the day of failure and betrayal, I pray to remember the calling that comes first and last. The tasks and duties do matter, but what abides-- our identity , our belonging, our hope--is heard here by the waters' John Stendahl
Our words, like your steps, are more and more halting as time drags on and answers are barely trickling in. And so, in silent, soul binding love, we simply "watch and pray" with all of you. May God's peace somehow find its way into your hearts. GGV
Hey guys,
Back in SF, got to the airport in plenty of time, and then my flight was delayed an hour.
It does seem that you guys are considered honorary staff there, and like Jen's post awhile back, it seems you have to remind them that you are parents and no, you don't want to be there.
It was tough leaving you all, I wish I could have taken you with me to San Francisco to escape it all.
I love you, and miss you already.
Jon
Just know that we're all continuing our prayers, and our thoughts are with you constantly. I'll be praying for no staph or other infections, and for the fever to disappear. Joey is such a great big brother. I'm sure like the rest of us, he just wants ALL of you home!
Love you guys.
Patience and peace.
Liz
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