Day 28 (28/4)

Note From Last Night – 9:57pm

Asher’s new primary nurse, Kelly, gave us a call to report how the rest of yesterday went…

He’s weighing in at 910g (2lbs 0.0993oz)…

Someone took the original name sign she had made for him so she’s now making one for Asher at home…

Kelly is really sweet and definitely protective of our little firecracker 😀

9:30am – Phone Call

This morning hasn’t been Asher’s greatest day, definitely not the worst either…

He’s had oxygen desaturation pretty much all morning. They have gone up on all his levels for the jet and side vent…

According to his X-ray this morning, his intestines are looking really full. With that, they’re going to hold off on fortification today but will not decrease feed volume…

His growth is stable and his head circumference is on track…

They’ll be putting in a new arterial line so they can draw blood without having to poke him with a needle every time they need to check ABG. They’ll be monitoring this during the DART steroid treatment…

Dr thinks his adrenal glands are under performing. The steroid treatment will help with this as well, but they want to do labs for tracking and academic purposes…

12:30pm – Hospital

His belly is really big today. It’s the first thing we noticed walking in. Nurse said he’s a bit backed up and will be giving him a glycerin enema very soon…

We also noticed that he has a bit of skin irritation on his face, just to the front of his left ear. It’s from the bar (the stabilizing mechanism for his vent and feeding tubes) being adhered to his face for so long…

The bar hadn’t been changed since Summerlin. They’ve now removed it and are only using tape to hold those tubes in…

1:15pm – Hospital, Neurologist Chat

Dr. Bragg is wonderful…

She came to check on Asher while we were here today. It’s the first time we’ve met her since we’ve been here (the neuro we were talking to before is her sub)…

We discussed the enlarged ventricles and the potential partial blockage he may have in his central canal…

She said that because he has not shown any worsening conditions, that she is “on the back burner”. They do check head circumference everyday, and if there was any abnormal increase in size, she’d be brought the the forefront of Asher’s care…

I did ask about the ETV procedure (finally) and she said that the success rate is around 10% with children that have had brain bleeding and infection…

Of course, Asher has two gold medals already 😂

Because of the extreme ability of a babies brain to heal, often times the ETV will close. He also doesn’t qualify for the ETV merely because of his age and size…

I did ask her if the trend he’s on continues, is it even possible for the ventricles to come back down to normal size. She said it’s highly unlikely, however, if he continues to have zero change I.e. no more enlargement, there is a chance he wouldn’t need anything done at all (no reservoir, no shunt, no ETV, nothing)…

I asked if he does make it through NICU with the above mentioned scenario, is this something that we should be concerned about later on in life…

She said no, as they would have a clear picture of his future well before he ever leaves the NICU (needing a shunt/ETV vs needing nothing)…

This is the scenario we’ve been praying for: that even though Asher has had and may even continue to have complications in this stage of his life, that God preserve him while he’s in it and when he’s coming out of it…

2:26pm – Ativan Time & Roid Rage

This boy is wild 😂😂

He’s beginning to breathe over the vent and becoming super agitated, which is causing the machines to go a little crazy…

Little bit of Ativan, night night! 😂

They have started the first dose of steroids. Dr. Lipsky said to prepare for possible “roid rage”. It’s common during this treatment and we shouldn’t be alarmed. She’s hopeful that we’ll be able to see large levels of weaning from the vents later on tonight…

On a final note, we have asked Michael (who was trained by one of the NICU nurses we loved at Summerlin) to be one of Asher’s primary nurses. We have two others that we’ll be asking (Kate & Annika). They were amazing, so fingers crossed that they say “yes” and don’t let their earlier experiences with him scare them away 🙏🏻🙏🏻🙏🏻