Day 41 (30/3)

Shortly after we left the hospital yesterday, Asher took a big step back…

9pm-Last Night

The night Dr called us just as we were calling to check on how the MRI procedure went…

Monica picked up the phone to a frantic nurse handing the phone to a Dr that left us with more questions than answers…

Before we left the hospital around 2:15pm I had a talk with Asher’s RT. He said Asher’s numbers have been amazing and doing very well today. They haven’t had to go up on any support, he’s been able to consistently wean him down since extubating, and his last ABG was “stellar”…

Somewhere between the time we left and 5pm Asher had a seizure (Dr isn’t 100% if it was a seizure or something else as the signs were clear) while loading him into his transporter. He was given a loading dose of phenobarbital to stop the seizing. After he was given the medication he was then taken down to do the MRI…

We’re not happy they didn’t give him more time to stabilize, because his night only gets worse…

The MRI started around 5/5:15pm. He was brought back to his pod around 6pm. From 6pm to 8:45p he was struggling to breath. He continued to desat while his O2 requirements shot through the roof to 92%…

He was finally re-intubated at 8:45pm…

The intubation process was a joke. The Dr wasn’t able to intubate and finally handed it over to Asher’s RT, who was able to successfully intubate. Is it common for MD’s to not know how to intubate? Or is it simply “not their job?”

The biggest question we have: how long did Asher go without sufficient oxygen?

His CO2 was 64 after the MRI. At 9pm his CO2 was down to 60.9%. At 10pm his O2 requirements had been weaned down from 92% to 36% and his pressure was at 20.

The MRI allegedly went well and they have all the images they need. They’ll be discussing it in the morning with Dr Lipsky and the specialists. Dr Bragg (neuro) will be one of the specialists, which we’re very happy about…

According to the night Dr, extubation could take 2 or more days…

But…

God is good, and is still in control…

Human Derived Milk Fortifier (HDMF) vs Bovine Derived Milk Fortifier (BDMF)

As of now, Asher is tolerating the bovine fortifier at 22kcal. They plan on bumping it up to 24kcal in the next day or two (who knows after last night)…

But he didn’t do well with it the first round last week, so we started our research…

I found the studies that weigh HDMF vs BDMF…

The studies show that HDMF significantly reduces many risks (NEC, surgical NEC, BPD, ROP, late on-set sepsis, etc) for preemies. Plus it’s naturally easier for them to tolerate…

I talked to Dr Lipsky about changing his fortifier and she said “Although I’m all for it, we’ve been petitioning the hospital to bring it in and they haven’t, yet. We just got donor breast milk, which was a huge feet.”

It has to be a move for the entire hospital, not for one patient, voted on by the board, it’s more expensive, etc…

I’m gonna take a wild guess that most kids in the NICU aren’t cash patients, so the cost is irrelevant…

How are you the children’s hospital that every other hospital sends their preemies to, and yet you don’t have optimized nutrition for children when they need it the most?

There’s only one company that makes the HDMF…

Prolacta Bioscience

I reached out to them yesterday and spoke with a Sr Account Manager (Cari)…

I have a call with their Chief Medical Officer today…

I’m going to do everything I can to get Prolacta into Sunrise…

8:05am – Quick Call: ABG & O2

I called in to get an update on Asher’s CO2 & PH for his ABG and to find out what his fiO2 levels are…

CO2 is in the 50’s and his PH is still sitting at 7.28. The nurse said they have weaned him down significantly on all vent settings over the last hour. He’s on his way back to where he was before his incident yesterday…

She apologized for the crazy-ness last night. The NICU apparently had one of their busier nights. Lots of babies in trouble, lots of babies period, a few C-sections, etc, etc.

Yeah, we could tell…

Our nurse last night wouldn’t take our calls and kept forwarding us to the Dr. The Dr was in the OR forwarding his calls to our nurse. Good times…

We also found out that the loading dose of phenobarbital was given AFTER the MRI…

Hospital visit and update coming soon…

9:09am – Phone Call w CMO From Prolacta

I had a fantastic call with Dr. Melinda Elliott. Along with being the CMO, she’s also a practicing neonatologist…

She gave me the steps to get their product into Sunrise. Dr Lipsky has to reach out to her first, so I’ve passed on the contact information…

Dr Lipsky is currently working with the hospital admin to see if we can get the Prolacta ordered and delivered by tomorrow afternoon…

The uphill battle we face: changing SOP’s (standard operating procedure) for the entire NICU. If Asher gets it, everyone else would have access to it. It’s definitely worth the price of admission!

We’re prepared to climb the chain of command to make this happen. This includes reaching to Patient Services & Risk Management, COO, CEO, everyone…

10:53am – Phone Call: Dr Update

After a few phone calls, Prolacta was approved!! That was fast!

Dr Lipsky was a huge help in advocating for us with the hospital admin…

I was getting ready to call the COO of the hospital to discuss the request when Dr Lipsky called Monica’s phone and said “we’ve got the green light for the Prolacta!”

Can’t make this up…

Dr Lipsky said “Asher will be known for changing the world in this NICU!”

He’s back on just breast milk today and will start him on the Prolacta when it arrives Tues/Wed next week…

God is good!

11:30am – Hospital

It’s my turn to hold Asher today 😬

His O2 is down to 28%…

He’s doing well!

MRI results: no infection of meningitis!! As for the ventricles, it showed the same “stuff” as the ultrasound did, which still has the specialists wondering…

Getting Asher back to clinically well is the goal. For his brain, we’re praying for preservation still. It’s a situation that doesn’t necessarily warrant surgery but does raise concern…

So they’ll watch him… we’ll watch him…

But we also must see without eyes…

Seeing his first football game, his first date, his first day of kindergarten, his first steps, his entire life…

We will continue to worship, continue to pray, continue to fight, and continue to hope!

Thank you Lord for where you have us. We will continue to boast in our inabilities while we watch you move…

UPDATE!! 12:45pm – Spoke With Dr Bragg (Neuro)

Every time we talk to her my mind is blown 🤯

She showed us the MRI images and explained exactly what was going on…

Her conclusion: there is nothing serious enough to warrant her doing anything, which is the position we’ve been in since arriving at Sunrise…

He is currently processing/dissolving the old blood. He does have a new bleed but it’s VERY minor. She said that ultrasounds typically “over read” blood, which is what caused the concern yesterday…

He also has space in between his brain and skull, which is also a relief (we saw it in the MRI to confirm😬)…

His head is still soft and still within the 3rd percentile for growth (normal) 🙌🏻🙌🏻

We also decided to hold off on holding him today as he’s had a few brady spells and is super sensitive right now…

Now to get him extubated again!!

Praise God for this news!!

One More Update:

I spoke with Mark Amox, the COO of Sunrise. I called to tell him thank you for making Prolacta available for Asher and to give our team a huge shoutout. He was very appreciative and happy that we’re happy.

I did ask him about them making Prolacta available at Sunrise and he said that since we brought it up, they are discussing a protocol to have it on hand as an optional solution! 🙌🏻🙌🏻🙌🏻

20 min later, Dr Lipsky gave us a call that the projected delivery date of Tues/Wed is now tomorrow morning 🤯

Going to take a nap now… wow!