RT had another pretty stable night.

One large event though. Heart rate into the 20’s spo2 down to 8. Always scary.

Nurse today is a primary!

X-ray we asked for last night prompted some changes.

Hypertonic Saline started to help brake up the fluids in his lungs.

CPT and turning ordered more frequent.

CPT every 4hr with albuterol.

Turns will happen every 3 hours. Help get fluids moving and open up different portions of his lungs.

I’m happy to see these changes! Glad we advocated for an xray and had the respiratory therapist help make it happen!

Weaned respiration rate to 36.

They want to add in a liquid protein that will potentially help his blood osmose the 3rd 3rd space fluid.

Essentially the protein would help draw fluid back into his bloodstream from where it does not belong then be filtered by his kidneys and then pee it out.

A potential drawback is a higher occurence of reflux. (One thing that contributed to intubation)

We hang out. He looks calm.

1200 cares. Temp is hot. Diaper smells odd, just pee. I mention it to the nurse,  we will keep an eye nose on it. Possibly just some of his medications.

Turn down bed heater.

Hang out,

1300 we have a care conference a sit down with RT’s care team. Neonatologist, pulmanologist, discharge coordinator, primary nurses, occupational therapist etc.

Got everyone on same page and a slow plan to hopefully move forwards. A few weeks of being intubated.

Mom and I brought up our concerns, voiced our frustration, and recommended several changes. Some changes we want are being made.

Care conference ended up being more helpful than I thought it would.

A few of the positive things the doctor mentions is his head growth and length are still close to normal although on the lower side. The steroids he is getting have an effect of stunting growth. Growth is always a concern especially with preemies,  and considering everything working against him he is doing surprisingly good alright.

Another positive is that the peak pressures required to open up his lungs is actually not that high considering how bad his lungs actually are. Scar tissue and damaged lungs often take higher pressures to open up.

Back around the time when we were on the oscillator the pip had to be 27-28 now he is around 20.

Lunch

1630 sponge bath time. RT was supposed to get a bath last Thursday but….intubation. He’s one smelly  boy. The respiratory therapist helps position him and the nurse helps guide us to do the best possible job and resupply wash cloths I go through them quick! Near the end at the prime opportunity he manages to pee all over his bedding. It’s a good thing its all getting changed out anyways.

I feel like we removed enough dead skin to make a 2nd baby. Eww no wonder he smelled.

After his bath the nurse works on weaning his oxygen some more.

Eventally she gets him to 35%! Lowest we have seen in a while.

Nurse tonight is a primary! He is more stable than the last time she had him!

2000 cares. Temp is good,  just pee no odd smell.

Rotated to his belly.  He looks like he wants to crawl, legs shoot out and pushing with arms and lifting head and tubes. I can’t wait till he is on a lesser ventilator,  and off of pain medication.

We hang out for a while.

Most stable day in a while!

Early morning tomorrow. Another eye exam.

Sleep tight, keep on fighting!