Day 82 (36/1)

1:06pm – Hospital

As some of you already know, the results from Asher’s MRI & Ultrasound yesterday have shown that he will need a second brain surgery…

From what we understand, there is a cyst in his third ventricle that has caused a loculated area to form…

Surgery Starts At 3:30pm today..

The goal for Dr Bragg today is to remove the cyst, allow CSF to drain into the right ventricle, and determine whether or not he’ll need one shunt or two & whether he’ll get a fixed or adjustable shunt…

She’ll remove the cyst, observe the affects of removal in real time, then make a decision on shunts all in the same OR visit…

Dr Bragg still seems to maintain a small amount of optimism that removing the cyst has the possibility of being the “cure-all”…

The cyst is putting pressure on his brain and brain stem. This could very well be the reason why he’s been extremely agitated for the last few days…

This is a big step backwards for him…

He’ll be re-intubated at 2:30pm today. This carries minimal risk for his ROP progressing as he’s much larger in size. The honest truth: he HATES it. 😕 The ventilator is already back to being bedside…

He’s getting a blood transfusion, this throwing him back into an anemic state and shutting off the hemoglobin production from his bone marrow. This takes 3-4 weeks to regulate once the transfusion is complete…

He lost his crib and is now in a hybrid between a crib and isolette…

He’s NPO and will be back on TPN, which isn’t good for his kidneys…

The PICC line will remain in place…

The silver lining? He’ll stay here in the NICU with Drs and nurses that “know him” during his recovery…

We knew all of these risks when we said we were going to fight to keep him alive, but with all of the consistently good days he’s been having, today is a reality check…

Updates

Dr Snyder has diagnosed Asher’s ROP at the same level for the last three weeks. We’re thankful for it not progressing…

He tested negative for pulmonary hypertension…

His PDA is still closed…

His antibiotic treatment ends today but he will probably be on a new regimen of meds post surgery…

1:59pm – Intubated

Intubation went well. He brady’d down to 50, but came back within a minute after the vent was connected…

Now we wait…

Wait to sign consent forms and speak w Dr Bragg…

Wait for surgery to be over…

God willing, surgery goes well 🙏🏻