Yesterday was my original due date. Instead Lawson came six weeks, one day early and has been fighting for his life ever since. We've had ups and downs, happy tears and sad ones. The news seems to go from bad to good and back again. This time he made it 22 hours off the ventilator. (for the quick update, scroll to the bottom)
The original 'problem' that caused the team of doctors at Duke to induce labor six weeks early was the fluid found in his lungs at my 33 week check-up. Since then he:
had chest tubes in both lungs to remove the fluid that was there inutero
spent 44 days on a ventilator (minus the 16 hours and then 22 hours he was extubated)
developed an abundance of blebs (air filled blisters) throughout his left lung
developed Pulmonary Interstitial Emphysema, PIE (caused by the ventilator).
has gone through 13 days of a ‘controversial’ steroid, Decadron, which actually seemed to help
has been exposed to the radiation of x-rays every 12 hours, sometimes more often since his birth
had a bronchoscopy (a tiny camera on a tube down his trachea)
was born with tracheomalacia (a weak trachea which closes when he tries to exhale unless stinted open by the breathing tube), which wasn’t found until the bronchoscopy
still has a large pulmonary sequestration, the mass of unhealthy tissue at the bottom of the left lung
had a pneumopericardium (air in the space between the heart and the pericardium, the membrane surrounding the heart) and a tube to remove the air
had a pneumothorax (air in the pleural space around the lungs) and a tube to remove that
has gone through two EEG scans (electroencephalogram- a test that measures and records the electrical activity of the brain)
has been through one CT scan so far and another scheduled for Monday
had a patch of his hair shaved and an IV placed in his head for a CT scan that never happened because radiology didn’t like the IV in his head
suffered a very serious IV infiltration (when the vein that the IV was going though ruptures and the fluid infiltrates the surrounding tissues) over a month ago on his left foot which almost cost him the feeling in his foot; it is slowly getting better
I’m sure there are more things, but those are the ones that come to mind right now. Most of them I have blogged about before, some I have not. It just seemed like time to recap our unbelievable journey. The hardest part is that the wonderfully trained, amazingly intelligent, and extensively experienced Duke doctors admit to having never seen a case like Lawson’s.
The extreme high that we were on Friday came crashing down Saturday morning when they called to tell us he would need to be reintubated and that his x-ray was concerning. His x-ray was considerably worse showing that he has developed a huge bleb and what seems to be atelectasis (several of the alveoli, little sacs that exchange oxygen/carbon dioxide, are collapsed). He is scheduled for a CT scan in the morning, we’re meeting with his team of doctors tomorrow afternoon, and he is on the surgery calendar for Wednesday. The fact that things looked so great on Friday makes it so much harder to accept the huge turnaround on Saturday. It’s becoming harder and harder to stay positive right now, so please say an extra prayer for me!
