Update news: Two things I wanted to share with you all.
First: Wed., April 1st. We found ourselves back in the ER with Ivee. She had been declining with her oxygen rates at night for a while, really over a month. This night, fever, high heart rate and needing O2 support lead us to believe she had double pneumonia, again. An x-ray revealed her lungs looked good except for the lower left lung, where they believe she has scar tissue, looked larger. She slept in the ER on Bipap needing 9 liters a minute oxygen bleed in. (FYI: The max measurement for allowed oxygen in the hospital only goes to 15 liters)
They admitted her ICU the morning of Thursday. After a 9 hour stay in the ER, we were happy to get a decent nap. That afternoon the on call Pulmonologist came by. At this point, we had weened her down from 9 liters to 5. We have not had this doctor before, but he likes to be a bit more aggressive, and I was ready for someone to do something, after months of calling her personal pulmonologist nurse, and hearing "Your doing all you can do at home. Just keep doing it." (Let me add, we have a sleep study scheduled to "see" what else we needed to do and what changes to machines need to be made. But I have been struggling with having to wait until August for that appointment. Yep! The next available date for a study is in AUGUST. I was at the point of calling and saying, this is a medical health emergency. Can't you move her up somehow? I digress.) This doctor, whom is very knowledgeable and specializes in children who deal with capacity issues and aspiration, adjusted her bipap and cough assist machine, and we used them more frequently that day. He also put her on a drug to dry up secretions at night (which Emmett and I had often asked other doctors about, knowing and having used this drug in the past). By Thursday evening, she only needed the bipap while awake. To our surprise, the night came, and by morning, Ivee hadn't needed any O2 bleed in at all. While SLEEPING!
This child went from being 9 liters dependent to less than 48 hours on room air. This was only something God could do. Did the doctor help? Yes, but it had to be orchestrated by the Lord.
Since we have been home, she has done incredibly well. She's needed some O2 bleed in at night with her Bipap, but, except for one night, it's been less than 2 liters. She is more active, and wants to taste test again.
Yesterday, I received an email with and MRI scheduled for May. I thought there was a mistake, because we are a six month scan intervals. After emailing his nurse, I learned this wasn't a mix up. The doctor is not necessarily "concerned" about anything, but he wants to take precautionary measures, monitoring the cystic and brain changes since Ivee has endured so much trauma to her brain and brain stem.
Needless to say, I am very pleased to have a doctor who cares so much and wants to ensure that my daughter is safe and doesn't want to take any chances. However, this mom wasn't mentally prepared to deal with the anxiety and crying/screaming that will ensue from the great "Needle Fiasco!" The needle stick sends this child into mental and physical meltdown.
So, remember us on May 26th and pray that we can make it through, just the two of us!