Hi everyone, sorry I haven’t given a thorough Agnes update in a while. We’ve been at the hospital every day morning to afternoon, then I have been going back for a bit after Stephen is in bed. I used to write my blog after Stephen went to bed, but now I’m visiting Agnes during that time! Well, tonight she has been very stable for the past day or two, so I don’t feel bad staying home for a change. I’m pretty sure nothing will happen tonight that would require my presence at her bedside (knock on wood?). Anyway, they will call me if they need me.
So. Agnes is four months old today! Yay! It’s hard to believe she has been around in person for four months already. I guess all the days when she is in the hospital blend together for me. I figured out that she has spent 12 of her 16 weeks alive in the hospital; that’s 3/4 of her entire life! Holy Moly.
For this latest stay, she’s been pretty dramatic. Last week after the shunt placement surgery, she aspirated some “spit up” (gross) and she is still recovering from that event. Clinically they called it acute respiratory failure, and she has been on a ventilator ever since they transferred her to the Pediatric ICU (PICU). A couple attempts to wean the settings down failed, as did a trial run on the CPAP machine. Agnes needs the ventilator for now. The docs have even started warming us up to the possibility that Agnes will need to be on the ventilator at home, too. They don’t want that to happen, and we don’t want that to happen, but at the same time, we all recognize that Agnes needs what she needs whether it’s what we want for her or not.
Agnes has improved a lot in the past three days; on Monday she was still pretty much a mess, but yesterday and today she has been comfortable, sleeping, maintaining oxygen saturations, and overall being less “touchy.” When she came to the PICU, they started dosing her with a sedative since she was so irritated and touchy about everything, and the past few days have seen that medicine gradually reduced to the point where it may stop tomorrow, or become available just on an as-she-needs-it basis. Tomorrow they will also try again to reduce the ventilator settings. They will take very small steps, and carefully watch Agnes for cues that she doesn’t like something. Caution and carefulness will be the keys.
So we’re looking at another two weeks in the hospital, at least. Since we need to go so slowly with Agnes, it will be a while before we know whether or not she will need the ventilator at home. If she does end up needing the vent, that will add at least two more weeks to hospital stay since that’s how long it takes to transfer Agnes to the home vent and get the settings just right. Plus Jeremy and I will have to be trained on the vent, and we’ll have to line up additional hours of private-duty nursing, and we’ll have to complete a 24-hour care session at the hospital. Unfortunately, the 12-hour care we did for Agnes to come home with a trach won’t count toward this new requirement. Nuts.
But none of that is even a strong possibility yet! Not even one of her doctors is willing to say, “yes, she will probably need a vent at home.” They truly do not know what Agnes will do. It’s a mystery for everyone! Now would be a good time to pray that Agnes does well with the vent weaning so she won’t need a machine at home!
The tests that will help us determine her status during the next week or two are
- a follow up x-ray tomorrow morning to look at her lungs: are they clear and open? has she totally recovered from aspiration pneumonia?
- a follow up echo of her heart, on Monday: is her pulmonary hypertension improved or the same as last week? are there indications for the one available medication for this condition? this medicine is not technically approved for use in children, so the docs have to be sure Agnes really really needs it…
- continued attempts to wean the settings down on the ventilator, and assessment of how Agnes tolerates these attempts.
Me: “Stephen keeps standing in front of Agnes.” Stephen: “Stand in front of Agnes?”
Laughing, Weeping, Living 