Last night, at about 12:30 we called the NICU to check up on Ella. The nurse said she was doing much worse and her gas levels in her blood were really bad and they'd had to give her more and more support on her ventilator. She also said that her chest x-ray of Ella's lungs was quite bad and they weren't sure if she had an infection or possibly pneumonia. We called my mom and had her come over since Ella had taken such a turn for the worse and we went to the NICU.
By the time we got to the NICU, there was a team of 5 doctors and nurses in her room. She had gotten even worse and they'd had to not only sedate her but inject her with a medication that paralyzed all the muscles in her body. She had been fighting and making it only worse for herself because her heart and lungs were working so hard. She was being supported completely by the ventilator. They had tried to put her on a different machine to try and help her breath called and Oscillator but when they did that, she started crashing pretty badly and her oxygen levels in her blood were exceptionally small, while her CO2 levels were very, very high (about 3 times higher then they should be). A little before 3 AM, the levels of oxygen saturation in her body started dropping very, very quickly. The should be in the mid 80s or above and all of a sudden, one number at a time, they started dropping into the low 80's, the 70's, into the 60's and then into the high 50's. It was dropping in seconds and the nurse called for the doctor and everyone else and they all ran in and started working on Ella. We were absolutely terrified and you could tell that the doctor and nurses were extremely nervous.
Earlier in the night, I had asked the doctor on a scale of 1-10, 10 being the absolute worst that could happen, where is Ella? Her doctor said she was at an 8. So when Ella started getting worse, we were pretty sure that she wasn't going to make it through the night. While they didn't say it directly to us, you could tell that's what the doctors and nurses were thinking as well. Around 3, I told Shane that we may want to call some immediate family members because it didn't look like Ella was going to make it. Her oxygen saturation kept dropping and nothing they were doing was making her better.
They called in someone to do a ultrasound on her chest to check her heart and lungs. They saw that the artery in her heart was causing the blood to flow both ways which was being caused by Pulmonary Hypertension and was causing her lungs to cycle the oxygen rich blood through normally, but then it was cycling it through her lungs again, unoxygenated. So her lungs were receiving unoxygenated blood, which is really unsafe. When they saw this, you could feel the tension level drop just slightly in the room. They ordered up nitrogen oxcide as well blood pressure medication to help and explained everything to us. Within a few minutes, maybe 15 minutes, her oxygen saturation levels had started evening out and she was more stable. I asked her doctor what number we were at, and she said about a 7.5 BUT she was almost positive Ella was gong to make it though the night. They took some more labs to check the gas levels in her blood and Shane went to sleep. I wasn't willing to sleep until I knew she was absolutely stable and we wouldn't know that until the labs came back. I went and made myself some tea and just waited.
At about 5:00 am, the blood gas came back and had significantly improved. She was stable and her doctor told me that she planned on being able to tell me that Ella was a "5" (on my 1-10 scale) by morning. I finally laied down and got some sleep. I woke up at about 6:30 and they'd done more labs and her blood gas levels were even better. She was stable and improving thank GOD!
I got up around 8 AM for the day and talked to her usual doctor. Apparently, the problem Ella had had was not the actual illness but a symptom of something. They had been checking chest x-rays and there were several white spots and they were concerned that Ella had pneumonia. They had her on antibiotics for pneumonia and were running cultures but the cultures take up to 72 hours.
We left the NICU around 10:00 and Ella was stable. I've called every 2 hours and each time I've spoken to them, she's gotten better and better. Her gas levels have gotten better each time and she's on about 50% oxygen, compared to the high 80's she was on last night. She is still sedated because she's just so active and wiggly that she's making it hard on herself and her body is having to work too hard. Ella also had to receive a blood transfusion last night because her body was not able to replenish the blood that had to be taken from the labs fast enough. She will likely need another blood transfusion but she's very stable and improving a lot today.
We are so grateful that she's doing better today but last night was without a doubt, the most terrifying night of our lives. We came extremely close to losing her last night and continued prayers and positive thoughts are desperately needed at this point!