Better
Antonio has made some tangible progress which has been nice. He's been off of his sedation drips completely since Tuesday, which allowed them to remove the PICC line from his arm on Wednesday. That's the first time since the beginning of October that he hasn't had the line, it's much easier to move him without it and he also doesn't have to be woken up by them checking his dressing, and no more dressing changes every week either. There was also a pretty big risk for infection having it in as well. AND I can finally put him in clothes without having to cut the arm off and put snaps on everything. That alone takes away a lot of stress. He's been taking his pacifier a lot more and seems to be getting used to it which is great. And when he has awake periods he has been very curious about touching his hands to his face, mouth, and putting his hands together! I'll attach some video evidence of those big wins(:
His withdrawal symptoms continued to be pretty awful until Friday. We were giving him oxycodone to treat the withdrawal from the morphine drip, but it wasn't really working all the time. I asked if he could be withdrawing from the oxycodone because it seemed like he would get better and as soon as we went longer than 12 hours without the oxycodone he would start having symptoms. At first they didn't think that was the problem but Thursday they asked the pharmacist and decided that he could be withdrawing from the oxycodone. He's been on methadone since before they started weaning the morphine to try to avoid the withdrawals, so I asked if he was maxed out on that because it's better to optimize that vs giving oxycodone. At first the answer was yes, but Thursday afternoon we went up substantially on the methadone as well. He hasn't needed oxycodone since, which is great. He's had a few hours of awake time during the day, but has been pretty sleepy the rest of the time. I can't wait until he's awake more, but I'm glad he's at least comfortable. We're going to start weaning his oral sedation meds tomorrow, so hopefully that goes smoothly and much better than weaning the IV drips did.
They also increased his vent trigger setting to .25 in increments this week. That number is how sensitive the vent is to his body initiating a breath. I've heard different goals in regards to what setting he needs to be on in order to trial the home vent, until today it was .3 or .35. Today the NP said .4. So I'm not sure, but I don't think we should rush him too much because he's not breathing perfectly on the .25.
His carbon dioxide has been reading in the 50s and 60s (was in the 30s and 40s in NICU, where it should be) since we came to PICU and no one has been able to tell me why exactly, as it looks like he is breathing well enough on the vent. This week one of the NPs reached out to nutritionist and they recommended adding less fortifier to his milk, meaning he will get less calories. He's on 22kcal now, plain breast milk is 20kcal, which means he barely needs any additional calories. Sometimes overfeeding will cause carbon dioxide to build up, and it seems like the switch from 24kcal to 22kcal has helped, his blood gas looked better after the switch. It still doesn't answer the issue completely because his fortifier didn't change when we came to PICU so there was still something else causing his CO2 to read higher. He's now about 5.3kg or 11lb 10oz. He's still a little swollen, we're hoping that once he's on less medication and is moving more and more that the swelling will naturally come down so he won't have to be on diuretics when he goes home.
They also started him on an antibiotic after contacting the GI doctors about his constipation issues. Even after coming off the morphine he was still having issues. The theory is that he may have SIBO, which is a bacterial overgrowth in his small intestine due to the slow motility of his gut, which is due to the morphine. This can cause a lot of gas to build up in the small intestine, which would explain all of what seems to be his belly pain and "constipation." He never seems to be backed up on his belly xrays, but has a lot of gas in his small intestines, so this would make perfect since. I'm hopeful the antibiotics will help. Of course Friday they did an EKG and there is a marker on there that was reading too long due to the antibiotic and increase in methadone so they had to switch antibiotics and wean the methadone slightly. Nothing comes without a cost!
Lastly they did a kidney ultrasound because one of the doctors mentioned that sometimes ear problems (like his little ear) are accompanied by kidney problems. One kidney was a little swollen and he also has kidney stones, which are caused by the diuretics that are helping him pee. They'll do a follow up in 6 months to see where things are at. They did a hearing screening last week that read that he can hear out of one or both ears, but they don't know at what pitches yet. He'll probably need the baja hearing aid on a headband though. And his eyes are looking pretty good, there is a spot in his left eye that hasn't completely taken to the laser treatment that may need additional laser, but they are going to wait to see if it goes away on it's own.
It's insane to me that we are 5 months in and there is still this much to report every week. I figured by now we would just be waiting on his lungs to get a little better before we can go home, but every system of his body is still being figured out really. They tell me that once things fall into place that progress will move quickly, so I guess we're just waiting for that day! Thankful for the progress he's had though, I'm really hoping that we're through the last "worst part."
and cracked the therapist up so much by holding this pose that she wanted to take a picture >
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