Pulmonary Interstitial Emphysema saga continues

Britian's Pulmonary Interstitial Emphysema (P.I.E.) did not improve overnight. So first thing this morning when I arrived at the NICU I got the news that they were going to be doing some aggressive therapy to try and heal her lungs. The only things I really heard were sedation, paralysis, and morphine. All of these steps were taken to stop her from breathing on her own so that the high frequency ventilator could do all the work for her. They also want her lungs to collapse a little so that the P.I.E. can hopefully heal itself. Britian will be like this for the next 24-48 hours.


The pain of seeing your baby girl paralyzed is indescribably painful. I held her hand and caressed her feet up until the time she was paralyzed. I stared at her intent on remembering and savoring every moment of her beautiful limbs kicking and moving around. Now she lays limp and unmoving, hopefully resting and healing.


As I pen this saga they are yet again making more changes to my sweet girls' situation. She is also now on Nitric Oxide (NO). NO in this situation is used as a medication to help move the oxygen in her blood to the healthy and open parts of her lungs. They also added a bronchodilator to help open her bronchial tubes. This is of course all in addition to frequent chest xrays and heel pricks to get blood gas and blood pH levels.


To say that this has been a hectic day so far is an understatement. Only recently have I been able to calm down and regain my composure, enough composure at least to speak in a normal voice. Up until about an hour ago I was weeping, quiet, and removed. I had had enough of the business of Britian's room so I retreated to Jillian's bedside to be with her, sing to her, and watch her non-paralyzed body move. I love all the expressions my girls make, it is so painful to not see these from Britian today. But I am holding on to prayer, my faith, and hope that all of these interventions will work in her favor and she can come off of sedation very soon.

Pulmonary Interstitial Emphysema

This is a repost from my Shepherding Kind Hearts blog

Pulmonary Interstitial Emphysema, better known in the NICU as P.I.E. What is P.I.E. and why am I posting about it? First things first.


What is PIE?

Pulmonary interstitial emphysema (PIE) is a collection of gases outside of the normal air passages and inside the connective tissue of the peribronchovascular sheaths, interlobular septa, and visceral pleura secondary to alveolar and terminal bronchiolar rupture. Pulmonary interstitial emphysema is more frequent in premature infants who require mechanical ventilation for severe lung disease. Once pulmonary interstitial emphysema is diagnosed, intensive respiratory management is required to reduce mortality and morbidity.

Reference: http://emedicine.medscape.com/article/976801-overview, accessed on 2/22/11

Why am I posting about it?

My girls are struggling with PIE. Today Britian has developed PIE in both lobes of her lungs. Yesterday, Jillian had it in her right lung. Britian's has developed suddenly and has progressively gotten worse throughout today. Her Dr.'s are changing the settings on her high frequency jet vent, adding base to her fluids which should help with oxygen saturation, and waiting. We are all waiting, waiting and praying. Mortality and morbidity, those are two terms I can go without ever considering when thinking about my children. But alas, there it is, in black and white, PIE increases mortality and morbidity. Shoot an arrow straight through my heart, emotionally this is a tough one.

No one can tell me why she has developed PIE in both lungs so suddenly. Perhaps it is simply her severe prematurity or maybe the stress from this previous weekend has caught up with her. On Saturday Britian's breathing tube was changed because of an air leak. While changing the breathing tube Dr. Dagle tried her on the CPAP. Britian failed very quickly on the CPAP and the resulting lung issues have been a downward spiral. One of her lungs collapsed Saturday following the CPAP attempt, she was upgraded from the conventional ventilator to the high frequency jet vent, and is now battling PIE in both lobes. All steps in the WRONG direction.

There is a saying the NICU community; the first week is the "honeymoon" period. The girls and I are clearly out of the honeymoon. Physically they are struggling and fighting harder; emotionally I am falling and crashing harder. Before you go and post a comment on faith and hope or on how God is there for me. I know all of this, I truly do. But I am human, it is normal for me to struggle and fall to my knees in prayer.