Big steps in the wrong direction

One positive thing has happened over the past few days, Drew was able to have his right chest tube taken out. So now he only has one but it's still draining quite a bit.

Drew had a very bad day yesterday and things haven't been looking that much better today.

After his initial breastmilk, they increased it to 5 cc's an hour and he was doing great for about 24 hours. Yesterday, he began a backward slide, not digesting and his residual was green and mucousy. That's not good. Last night the breastmilk was stopped around 1 a.m. and restarted at about 8 a.m. back down at 2 cc's an hour. We're waiting to see how he does with it today.

There is a suspicion that he's developed sepsis. They took blood, urine and fluid from around the lungs to test for it. It takes 5 days to get the results but they might have preliminary results today or tomorrow. In the meantime, they've started him on antibiotics just in case.

His swelling is basically all in his head; it's so big. The worry is that there is a blood clot somewhere causing this to happen. He is going to have a head ultrasound and echocardiogram today.

His nurse who had been caring for him the past 3 nights told me last night that he's a completely different baby; something happened and we don't know what.

When his nurses had/have to get a blood gas (no more umbilical line for that), he desated/s very badly. His pre-ductal oxygen saturation went/goes down into the 70s and his post-ductal oxygen saturation went down into the 40s. His numbers will come back up after they leave him alone. This is now happening at every blood gas or when the nurses do their hands-on (repositioning him, diaper changes, etc.). He will let me touch him and not desat but I'm not poking and moving him. They upped his pain medication last night.

He had a very bad blood gas yesterday and that prompted some pretty major changes.

The biggest blow is that he was put back on the INO machine--nitric oxide to expand his arteries and allow the blood to flow more freely. He had a pretty hard time coming off of that machine while on ECMO and it worries me. They also had to raise his oxygen rate to 70% last night just to get him to calm down. They had lowered it to 64% by this morning and I expect that lowering to slowly continue throughout the day. I don't know that he's ever had to have his oxygen at that high of a rate and I'm too lazy to look it up right now. His respiration rate was also increased to 45 bpm.

So now we're just waiting to hear back on his latest blood gas numbers and U/S results. But something about him has changed over the last 36 hours and it's not good, in my opinion.

Here are some new pictures; the first 2 are from yesterday and the last one from this morning. You can see how swollen his poor head is.