Day 10: Lily's Lungs

Not a great day. We found out that Lily's lung x-rays are coming back with troubling signs that I'll describe below. They don't look good. Nurses are having difficulty weaning her down from the 50-60% oxygen saturation range in her new ventilator. 

I'm not sure whether to start this post with positives, or end with them. I do need to focus on the positives, though, regardless of placement. So I'm going to do both - top and bottom of the post - and mix it up a bit. So, we'll call this post a bad news sandwich. Crappy news nestled between a couple slices of various positive slices.

Positives:
1) No brain bleeds on this afternoon's scan! That's really excellent news. Three scans, no brain bleeds. I am very thankful for that.

2) Lily is digesting well. She is still on 2mL/hr, and the past few days it's been apparent that she is gaining a little weight. She lost 30 grams last night, but she is still above her birthweight and the docs tell us to expect little weight swings, since she is now passing stool. Lily weighs 820 grams now, or 1lb 13oz.

3) We learned that our insurance carrier will not limit coverage under our policy. So we don't have to worry about the medical bill, which will probably be north of $1 million. It may sound funny to talk about money at a time like this, but it's comforting to know that we won't be personally bankrupt on top of it all. I've had about as many kicks in the junk as I can take today, so thank God for insurance.

There is bad news, though- I'll cut right to the chase here. Two issues came up on her lung scan yesterday, and prompted the move to a different ventilator. 1) Lily might have either a lung infection or type of pneumonia, indicated by dark areas in her lung scan and 2) separately, she might have RDS (respiratory distress syndrome), which they are monitoring very closely to ensure it doesn't turn into pulmonary interstitial emphysema (PIE).

The attending physician said the words possible pneumonia and possible emphysema and I almost blacked out. Seriously? Anyone else want to kick me today?

I believe my descriptions here are accurate, but I could be missing something on the relation between the possible PIE, RDS and/or pneumonia. When the attending was explaining it, everything seemed fuzzy. Here's my best recollection:

Both conditions are treatable, and they are treating for both as preventative care. Risks of treatment do not outweigh the benefits. 

1)For the possible infection/pneumonia, they are administering azithromycin, an antibiotic (you or your kids have probably taken z-packs for strep- same thing). Her lungs sound clear, which is good, so IF it is pneumonia it is being controlled and isn't audible by stethoscope.

2) The possible PIE is indicated by an air pocket in right lung (a pneumatocele) - it's basically lung tissue that's retaining air, instead of participating in the gas exchange. Right now the pneumatocele is a smallish spot in the right lung. It's not growing, which is fortunate. The risk is that it grows, the lung membrane tears, and it turns into what's called a pneumothorax - a lung collapse - essentially leakage of air out of the lungs into the membrane surrounding the lungs. If the pneumatocele gets much worse and turns into a pneumothorax, which we are praying it doesn't (and the pneumatocele doesn't show signs of that currently) the the docs would have to surgically address the issue. 

The way they treat the pneumatocele, and hope to stave off possible PIE, is by using a different ventilator that I wrote about yesterday- the jet ventilator. Before I get into how the jet ventilator will help, a brief background on the ventilators she has been on and their functions:

A) The first ventilator (the oscillator) was continuous positive air pressure plus rapid in/out breaths... designed after bird lungs. The machine basically did all of the breathing for Lily. When she started stat'ing well on the oscillator, docs moved her to a regular 'tower' ventilator, which was continuous positive air pressure. She stat'ed well at about 25% oxygen in her ventilator before moving to the tower.

B) The tower didn't do the breathing for lily- no in/out force if her own lungs were "driving". So, it allowed her lungs to do the in/out motion, which she did at about 60 breaths per minute. The tower, however, had a minimum "cruise control" of 40 breaths per minute, so if Lily's own lungs took a rest, small bursts of air inflate her lungs 40 times a minute, but she would exhale naturally- no machine assisted exhale on the tower (allows for passive compression of lungs, just like when you take a breath... you don't have to 'work' to exhale.) this resulted in little pockets of air called a pneumatocele. Unfortunately the doctors say they do not see pneumatoceles frequently.

C) That was the reason they switched lily off of the tower to the jet ventilator - the jet has a machine powered exhale, which helps lily clear out her lungs... hopefully, it will help deflate the pneumatocele over a period of three to four days.

So, we are praying for Lily's lungs tonight, today, tomorrow and the day after tomorrow. The doctors are still telling us to take it one day at a time. We are trying to stay positive and hopeful.

Other crap news- this is where I get to hate on insurance companies a bit... Since Sara isn't "homebound" the visiting nurse service is giving us trouble about providing a nurse to pack her wound. They say she's not homebound, since she is able to visit lily in the NICU. We HOPEFULLY luck out and get them to agree to send a visiting nurse during the week, but for weekends, it's yours truly. Packer extraordinaire.

It's not just insurance companies that I could hate on. I hate everything about this. I hate that I have a frequent parking pass to the children's hospital. I hate knowing the security guards on a first name basis. I hate knowing the fastest way to get to the NICU. I hate the au Bon pain in the children's hospital!! I just wish this was a nightmare that I might wake up from any minute. But it's not.

Much though I hate this entire situation, I am GRATEFUL for many things.

So, some positives to close off with:
1. Lily is alive, we celebrated ten days of life today, and she is still fighting.
2. They just took another chest x-ray at 10pm, after 12 hours on the jet ventilator, and her lungs showed no progression in the nematosill or shaded areas.
3. They just bumped Lily's breast milk feed from 2 to 2.5mL per hour! This is a great development, and she is now half way to a full feed, which is roughly 5-5.5mL/day.
4. Lily is being seen by the best care available- the Westchester NICU is a nationally recognized level IV NICU.
5. My wife and daughter Addie are healthy.
6. Tons of family and friends have been supporting us during this really (really, really, really) shitty situation in countless ways... from dinners, to someone to talk to, to babysitting, to little notes of support, the list goes on... thank you everyone following Lily's story and sending her prayers and well wishes, too.

Lily is still fighting. She will continue to fight, and she will - we all will - pull through this.