Day 44 (30/6)

7:39am – Phone Call From Nurse Kelly

I knew it wasn’t good news the moment I saw Kelly’s name on my caller ID…

She went on to explain that Asher didn’t have the greatest night…

It was eventful to say the least…

Bradycardia, desats, Bradycardia, desats…

If you recall from the night he was reintubated, they initially tried to give him a 3.0 tube but couldn’t, so they settled for a 2.5…

I don’t know how much the difference in airflow is per tube, but what I do know is he hasn’t done well since getting the 2.5…

They ran an X-ray to see if the tube had moved and checked to see if there was a larger than normal air leak. The air leak was confirmed, mainly due to the 2.5 size of the tube. The night Dr (not the one that we’re NOT fans of) made a decision to extubate and reintubate with the 3.0 tube…

According to Kelly, the execution was flawless and the process lasted maybe 60 seconds 👏🏻👏🏻👏🏻

During the X-ray, they also saw that his intestines were dilated…

This could be from the exposure to cows milk (which can cause a stricture: narrowing from scarring) with the bovine HMF or it could be that he has a very dysfunctional bowel genetically (VERY RARE)…

He’s tolerated Monica’s milk extremely well, but no matter the fortifier, it causes his gut to act up…

With this, he’s NPO as of early this morning and will be on TPN until his gut takes some time to rest…

Lastly, I reached out to Dr Elliott at Prolacta and asked her some follow up questions about fortification in general…

One of the things she did mention is that hydrocephalus can affect gut movement as well…

Science is fun…

Asher’s cute though 😍

9:58am – Consent For Ventricular Tap

During the last LP, Asher’s CSF was showing negative for cultures…

BUT…

From the blanket of antibiotics he started receiving from a couple nights ago, his white blood cell count was coming down and his glucose was increasing (due to the antibiotics fighting something off, of which no one has been clear on)…

The last place to be tested is the CSF in his ventricles. Dr Bragg explained to us that the lateral ventricles are naturally compartmentalized. This, along with the studies I found last night, means that it is very possible to have CSF with negative cultures coming from an LP, but positive cultures coming from a ventricular tap…

It makes sense now, so we gave consent…

Dr Bragg pulled 10cc’s, which she said is “enough to be both a diagnostic and therapeutic amount”…

And sure enough, although the CSF they pulled from his brain was clear, the coloring was yellow (think Mountain Dew)…

This means that more likely than not, there’s an infection. After results come back they’ll be able to give more acute care with antibiotics and cancelling the antibiotics they don’t need…

He started receiving a low dose albuterol treatment every 6 hours starting this last Saturday (2 days ago) to help open up his lungs and prepare him for extubation…

The extubation that now seems much further away than we had hoped…

Kelly didn’t leave his side last night. 12 hours of nonstop care, balance, & stress. We definitely couldn’t imagine not having her as his primary and we are so blessed because of it…

https://youtu.be/–sEqcUASPQ