I just got the word today that my baby girl who has fought to breathe her entire life is coming home on oxygen. You would think the doctor would call you to tell you about it, but I had to find out from the nurse during my usual check-up call. I'm happy, but my heart breaks for her. She's been through enough already, now she has to travel back to FL on a monitor. So frustrating.
oscillator, which scared me because her chest was moving so fast I though she was going to explode. At that time I really thought she wasn't going to make it. She was also under a tent that moisturized her skin because, according to the nurse, she would've evaporated. She was so fragileand small. She stayed on the oscilator for a few days, then put her on a high-flow nasal canula called a vapo-therm, but didn't last long and had to be intubated again.
Sasa was on the ventilator for a while, which actually caused a lot of the problems that she's going through now. The ventilator does damage to the lungs after being used for an extended amount of time. Sasa also had a heart murmur that was complicating her breathing and lung development. Medications to close it didn't work, so surgery was the only option. On August 6th she had her surgery. It was the worse 20 mins. of my life. Anything could have gone wrong. The surgery was a success, but she was a respiratory mess for 2 days after. I was a hot mess. She finally pulled through. It took a couple of tries (the first try she actually extubated herself lol), but she finally went back onto the vapo-therm. She graduated to a regular nasal canula and I thought we were home free until she took a whole bunch of steps backwards. Sasa was taking a 42-day cycle of oral steroids which ended on September 11th. She regressed so badly that she ended up on a C-PAP, it looks like a football helmet and she was so uncomfortable in it. It was terrible, yet again I thought I was going to lose her. Do you have any idea what it feels like to think you may lose a child? That you might have to except this tragedy as part of your life? It was an emotional roller coaster. She eventually worked her way back down to a high-flow nasal canula, then a regular canula. The nurses tried to ween her off of the oxygen, but it became clear that she wouldn't be able to come off for quite some time.
My first thought, how in the world are we going to get home with one baby on an oxygen monitor? It's just one thing after another! I'm so happy that Sasa wasn't taken away from me. The anxiety and nail-biting is over, but now comes a new obstacle. Soon, we will be home soon.