first infection
Easter week was decent, we were increasing the trigger trials by 2 hours every 2 days and had gotten up to 18 total hours from 12am to 6pm by Friday. He wasn't doing perfectly prior to Friday, but not bad enough for us to stop increasing the trials. He had an increase in his secretions the week before, and we kept thinking he could be getting sick but nothing came of it. Friday night he woke up from his nap and his breathing looked awful, and it was still terrible 2 hours after his trial had ended. He had a pooping episode and then calmed down, so we thought maybe that was it.
We held off on the trials the rest of the weekend, but by Sunday afternoon he was really working to breathe and they decided to swab him for an infection and start him on nebulized antibiotics. Monday night the swab came back and he had a pretty large amount of bacteria grow, but thankfully the nebulized antibiotics covered the bacteria and he started looking better at the 24 hour mark. The rest of this week he would look fine for most of the day, but by evening he couldn't trigger breaths at all. Thankfully last night he stopped doing that.
He's been very fussy the past 2 weeks on and off, really does not want to take his naps, and is giving us a run for our money putting him to bed every night. Needless to say, we're tired. Thankful that he didn't end up needing sedation or IV antibiotics, but sad that we had this setback. His chest xray really doesn't look very good at all, similar to when he had the trilogy trial failure. They tell us that it's amazing that this is his first infection since the trach and that it's basically unavoidable. It's discouraging to think the past 2 month's progress could be completely undone, but there's not much we can do but press on. We took a piece of his vent tubing out that helps positioning because it causes "dead space" and we're hoping that maybe that will help him trigger his breaths. They also successfully used a different mode on another baby that they put on the home vent last week, and we're hoping that when we get to that point maybe we can try that mode on Tony too.
Thankfully he was still wanting to take his bottle the whole time, and this week he was taking the whole thing every time we let him. There have still been good moments in between all of the stressful ones, but it's difficult to focus on those with the knowledge of his lungs being worse again. We're going to try, though, and hope for the best once the infection clears. My favorite times are before bed when he helps me turn the pages and when he discovers that he suddenly likes toys that he's seen a bunch of times before! Fredy and I were talking this week and we came to the conclusion that we can take the position of a lot of writers in the Psalms. They yell and are frustrated and confused, but always rejoice in the end. We just might not always rejoice with a smile, and that's okay. Praying for continued patience and acceptance of where we are.
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