12:58pm – Cruise Control
Our nurse said that he’s been doing well as long as they leave him alone 😂
Oxygen levels, BP, heart rate are all stable. He did receive a blood transfusion today. Not too much change at this point…
They haven’t done the spinal tap yet…
He’s been pretty chill for the last couple of days. Probably from meds + no rest finally catching up to him. He’s been moving and stretching all afternoon and has set of the Brady alarm a few times…
2:30pm – Full Throttle
Spoke too soon 🤦🏻♂️…
As they started to transition him to his side for the LP today, his vitals started dropping. With everything happening with this little guys + his natural feisty-ness and all kinds of movement, his vitals drop pretty quickly and easily…
It’s stressful to say the least 🤦🏻♂️…
Mom was able to calm him down for a bit by putting a hand on his head and another cupping his feet. His O2 sat jumps to 100% almost immediately every time she does. He needs the skin to skin so bad! (natural Ativan)…
Every time she moves her hand away his BP spikes 🙁
“Don’t leave me mom…”
Speaking of drugs, they’re giving him Ativan now. He’s too rambunctious for the LP so it was rescheduled for tomorrow to let the Ativan kick in with the hopes he’ll be calm during the procedure…
Couple of things were going to be asking for, from our own research:
1. The option for an ETV (Endoscopic Third Ventriculostomy) in leu of the shunt. He may be too young, but we will definitely ask…
2. A programmable shunt with an antibiotic infused tube instead of the standard shunt.
Option one: 99% of complications occur within the first 6 months of the procedure. After that, it has relatively no complications. It’s also a much better lifetime option that is never seen.
Option two: it works and it has the same outcome as option one as far as managing CSF, but it has many risks throughout his life (infection, additional surgeries for adjustments, etc). The antibiotic infused tube decreases chances of infection…
3:34pm – The Bugs
The infectious disease dr just came by to give us an update: first 48 hour tests show negative cultures. Waiting on next 48 hours before they reintroduce the PICC line.
She told us that the first bug was enterococcus in the blood. This is a naturally occurring bacteria that is found on the skin, in the GI tract, or in the urinary tract. Sometimes it gets into the blood (a place it’s not supposed to be) and causes an infection…
It can (and in Asher’s case did) reach the CSF, which is what causes Meningitis…
His blood work has shown negative cultures for the enterococcus for 48 hours 🙌🏻🙌🏻🙌🏻 one more test to confirm…
The LP that was rescheduled for tomorrow will tell us if we have positive/negative results for the meningitis… we’re praying and hoping for NEGATIVE!
The second bug: acinetobacter. This bacteria is commonly found in hospital settings and affects the trachea and lungs. It’s more than likely that Asher got it from intubation. This bug has also shown negative for last 48 hours. Anxiously awaiting tomorrow’s results!
ABG is good. Glucose is in the 80’s. And he’s finally relaxing…
We love our son so much and we know that God is absolutely in control. We’re blessed beyond measure!
Ps. I should’ve went to med school 🙂
7 replies to "Day 21 (27/4)"
All good news!! 🙌🙌🙌
Yes, you could’ve gone to med school but med school= college. Matt + college= Not happening 😂
Indeed Dr Hamel. Thanks for the updates guys!! Let’s go Asher let’s go 👏🏽 👏🏽.
I believe you are going to med school currently
You and Monica are getting an expedited course. Unfortunately. This is all training for taking care of him when he comes home. Three weeks old tomorrow.🎂🎉🎈❤❤
Matt& Monica,
God chooses our paths. We are drawn together by our need for Happiness, Life & Love. We live for family & for those who make our existence whole and meaningful! God is the director of our life paths an when we have deep faith, we accept what he’s given us. The two of you are a true inspiration of acceptance and true faith. I pray every day for your strength, faith and love! Continue to encircle your sweet Asher! You are in our prayers!
You’ve meet you match Matt! Continued prayers for strength for you and Monica. God has the last word🙏
I’m so happy to hear that Asher had a better day yesterday, and you already know that the waking up feistiness comes from his mama… 😉 😂 I’m praying for his other tests to come back negative and looking forward to hearing about the next step for his little head.🙏🏽 Thank you again for your update Dr. Hamel… That has a nice ring to it!👨⚕️