12:06am – Phone Call
We called in to check on Asher…
When we left, his heart rate had dropped to 40bpm more times than we’d like to remember (7 or so times)…
He “had a seizure” while I was taking his temperature. I air quote it because they said he’s showing the “signs of a seizure” but they don’t know for sure…
They want to do an EEG tomorrow to hopefully record his brain activity during one of his incidents to confirm…
He’s been doing really well all week, but a few things have happened over last 24 hours that could be causing his incidents from our observation…
But before we get into that, here’s what his incidents look like:
- Arching of the back
- Kick his right leg sometimes
- Raising his eyebrows
- Heart rates of 40bpm
- Desat to 50’s/60’s
Here’s what’s happened in the last 24 hours that could be contributing factors to the incidents:
- Weaning him off of morphine drip, which he’s been on since day 3 of life. Friendly reminder that morphine is an opioid. They went from a drip of 30 to drip of 20 to drip of 15 to drip of 10 to cancelling the drip and administering 10 every 12 hours in one load. This wean started 4 days ago and the levels drops every 24 hours. Today was day 1 of the 10 every 12 hours.
- DART protocol with the steroid treatment.
- Weaning pressure from jet down to 31, fiO2 from side vent down to 25%.
- Potential continuous brain bleeds. They haven’t been confirmed, but the night Dr LOVES to default to this answer. He may be right, but it’s annoying, especially without confirmation . We’re not fans and he might hate his job 🤦🏻♂️
Tonight was difficult to watch…
They’ve loaded him with phenobarbital, of which we just found out that he’s been receiving on a regular basis. They also gave him more Ativan tonight. Collectively this has calmed him down…
Our concern is the “withdrawal and give him a fix” scenario…
12:06am – Growth Update
He weighed in at 920g (over 2lbs) and his head circumference decreased 1/2cm. We’ve discussed watching for increase. Decrease we’ll have to research and ask about…
We noticed his neck was a bit swollen tonight as well. Not sure what that means either…
Lord, you know what you’re doing… Asher is in your hands!
9:18am – Goodbye Jet 👋🏻
I called in this morning to see how the rest of the night went. Niki, his nurse this morning, said that he only had one other episode of bradycardia during cares this morning. Outside of that, he’s been fine…
She told me that that had removed him from the jet around 9:18am and are keeping a close eye on him. Albeit our call was ten minutes after they pulled the jet, she said he’s responded well thus far…
Note: he may end up back on the jet if he is unable to stabilize on the regular vent…
I asked about about the decrease in head circumference and she said more often than not it’s merely a nurse measuring in a slightly different location than the previous nurse. Nothing to be concerned about at this point…
She also noted that the more typical signs of morphine withdrawal are tremors and high temperature. He’s definitely having the jitters and small tremors, but temperature is stable…
His EEG is scheduled for today. They need to capture a “live event” to confirm whether or not he’s having a seizure…
12:30pm – Dr Call: We Can Hold Him Today 😭
Dr Sahni called this afternoon to give us an update…
Asher is currently responding really well to not having the jet. Said he’s “really liking it”…
And that we can hold him today 😭 my
He’s on a pretty high and stable amount of phenobarbital which has reduced the seizures. They’re considering adding an additional medication to his regimen for the seizures…
They’ve gone down on his fiO2 today: 25
The EEG is being done this afternoon. We’re praying that his precious brain is ok…
4:15pm – Hospital: Not So Fast 🙁
Asher’s been off the jet for 7 hours and is doing very well. The nurse said he did brady twice since being off the jet, but none of the body movement from last night accompanied the drop…
Although the Dr told us that we’d be able to hold him today, we have to hold off a few days as he’s still really sensitive to stimulation and bottoms out on vitals with any significant touching/movement…
We’re definitely bummed out but we’re happy that he’s doing well with the DART protocol and one less vent…
He definitely has edema in his neck from the meds he’s on. The last time his neck was retaining fluid came from the same loading dose of phenobarbital…
His blood test today showed that he’s now in a therapeutic range with the phenobarbital…
He has a pacifier now 😬
Monica tried giving it to him but he wasn’t having it. He’s starting to show more consistent feeding cues, which is consistent with developmental progress…
As of late this afternoon they’ve increased the calories of his feeds to 24cal/oz. He is also at full feed volume for his weight 🙌🏻🙌🏻
With his next increase of feed volume they’ll be able to wean him off the TPN (Total Parenteral Nutrition: a method of feeding that bypasses the gastrointestinal tract) and swap it for clear fluid made up of dextrose and heparin…
It’s been a rough 24 hours… but we’re still in the fight!
2 replies to "Day 30 (28/6)"
😭❤️ Hang in there! God has you in the palm of His hand. 😭🙌😭🙌
Love me some Asher spunk!! Keeping everyone on their toes! You guys hang in there. Can’t wait till you can hold him❤️❤️❤️