Baby Zeke: Saturday, June 11

I realize it's been over a week since our last real update. Gary was here for several days, and I got here and realized the laptop was at home. Quick updates on my phone are one thing, but the more detailed ones call for an actual keyboard.

Zeke is doing well.

Last Saturday (6/4), he weaned completely off the fentanyl, and had transitioned to methadone to prevent withdrawal, since he'd been on the fentanyl since birth. He's been doing well on the methadone since. They've weaned his dose down on Monday and Thursday, and will go down to one dose a day on Monday.

They had started talking on Sunday about trying to extubate this week (remove the breathing tube to take him off the ventilator), but they wanted to wean him off the Nitric Oxide first, and give the vascath more time to heal and have it not bleed for more days before they did that. The Nitric was at 5ppm on Monday (down from 10 on Saturday), and they started weaning it down by 1ppm/day on Monday. He was able to come completely off of it around 1pm yesterday (Friday 6/10).

They did an abdominal ultrasound Monday. The pocket of fluid in his abdomen was gone.

On Tuesday, they increased his dose of Hydrocortisone, to try to help wean back down to a 'renal dose' of dopamine. They also moved his dialysis back to I=O (they had been leaving 5 on before this).

Wednesday was a non-eventful day. We just hung out. His O2 sats bounced around a lot throughout the day. In the evening, they retaped his ET tube, and found that it was pushed in too far. So they pulled it out to where it was supposed to be, and he's been satting better since. On Wednesday night, as I was getting ready for bed, they called and said that he'd started bleeding again. It wasn't a ton, and it stopped fairly quickly. They couldn't get the pump running again - he'd been off too long, and his lines and the pump lines had both started clotting. So they put tpa in his lines, and left him off the pump until morning, since he was due for a new pump Thursday anyway.

They got him on the new pump fine on Thursday morning. I headed back home for the day. We got a call in the late afternoon that he'd started bleeding again, and it was a lot this time. Surgery came in to look at the vascath, and saw that there was a leak in the catheter itself. They left him off dialysis, and scheduled him for surgery for Friday to replace it for a new one.

Friday, he turned two months old! Since he was off the dialysis pump and had to be moved to the transport bed anyway, they let me hold him until they came to take him down to the surgical floor. I really just held the mattress he was on, but he was on my lap, instead of a 'plastic box'.

Surgery went fine on Friday. They wanted to try to place a cuffed catheter, something more permanent, but it's a bigger line - wider and longer - and it was too big for him, so they ended up just replacing the vascath. When they put him back on the dialysis pump, it wasn't wanting to run. the pressure in the lines was really high, and they had to flush it a few times to get it to run. Because of the high pressure, when they flushed the line, he started to bleed a little bit, but it wasn't really anything, and has been fine since. The pump has alarmed a few times today with high pressures too. They did flush it, and got a clot out, but it seems to be positional, and as long as he's in a good position, the pump will run.

His art line (where they get his blood for labs, and also read his blood pressure) in his foot has also been acting up since surgery. It's positional as well, and when it stops reading, we just have to go in and move his foot, and it will start reading.

His vent settings were pretty much the same all week, until they took him down for surgery. He had been at a respiratory rate of 18 breaths/minute, and a pressure of 22/6 until Friday, when they went down to 21/6. When he came back from surgery on Friday, they had bumped his rate up to 30, because the meds they gave him for surgery will knock out the respiratory drive, and they wanted to make sure he was getting enough oxygen. He's still up to a rate of 25, but we're hoping to be able to wean that down soon. He's had good blood gasses today, and has been mostly breathing on his own. His O2 sats have been really good all day, except for 'that one time.'

His sats dropped a bit, and kept dropping, His blood pressure went up really high. He started turning blue, literally head to toe, and his sats kept dropping. I think he was in the 40's. They had to bag him, which is the first time this has happened while I've been here. He came back up fairly quickly, and has been fine since. I asked why he'd do that, and they said he just 'clamped down.' The nurse explained it as being similar in function to an asthma attack, where the lungs just won't open to get air. Sometimes that happens in babies who are on ventilators. He had been pretty upset right before - crying and thrashing around.

I've asked them about extubating, and because of that cute little spell he had earlier, it likely won't be this weekend. They want to make sure he'll be ok off the vent. If a baby does that, being on the vent makes it easier to get his lungs to open back up. They can bag him off the vent, but sometimes it won't work, and they'll have to do an emergency intubation. They want to make sure he's stable enough to be off the vent before they take hi off, just so they don't have to go back and reintubate, especially in an emergency situation. We're hoping for extubation mid-week, as long as everything keeps going well. He'll be on CPAP when he's extubated, which is done through a nasal cannula.

He's been up and down in his weight this week. He's gone from 3190g (7lb even), down to 3kg (6lb 9oz), and today is up to 3340g (7lb 5oz). He gained 250g overnight (almost 9oz), likely due to being off the pump for almost 24 hours.

We're just plugging away, slowly chipping away at the plastic in his body, and the issues that he's having. He's off the nitric... next step is getting off the vent.

June 4
3190g (7lb .5oz)