Sunday the 16th of August was the best day Grace has had since we had come home from the hospital. She was smiling more, acting more like herself, puking less and breathing less quickly and with less effort. We went to bed excited to have our little girl back. Unfortunately, that excitement was short lived. At 1:30 am, Grace woke us up to a blood-curdling scream that wouldn't stop, no matter what we tried. Grace was crying so hard that I swore she must have gotten stung by a scorpion or something worse. After, I worried that her oxygen level was depleting, so we hooked her up to her O2 monitor. Her sats were great, but her heart rate wasn't- it normally is in the 130's and it was up to 200!! She was grunting with each breath, and still very irritated. Worried about her heart, we called the cardiologist on call. The cardiologist could hear her grunting in the background and asked that we come in. Worried about the sick kiddos in the ER, I asked her to pre-check us in. We didn't get to the hospital until 3 am, and her heart rate was still in the 180's and now her O2 levels were suffering. We went onto oxygen and got admitted into the ICU.
Days went by with test after test. They tried blood tests, swabs, rectal swabs, moving her chest tube, unclotting her chest tube, stopping her feeds, starting her feeds, switching her meds, increasing her oxygen... NOTHING! They did EKHOs, EKGs, CT scans of her whole body, Xrays... NOTHING! Finally, they decided to do a surgical procedure that places a scope down her lungs and belly for a tiny biopsy, and then also a spinal tap. We expected to hear that Grace's belly was ill- maybe ulcers or something. Instead, we found she has a nodule on her vocal chords, blood in her lungs, and a moderate to severe floppy windpipe. The windpipe is narrow, so she likes the oxygen to keep the tunnel "pushed" open. The blood in her lungs may be heart related. They're planning on doing a cardiac catheter procedure to take a look at her arteries. The thought is that her pulmonary arteries are too small, creating a very high pressure system in the right side of her heart. The pressure creates swollen lungs, and swollen liver, which creates blood when irritated. I'm hoping that we're not looking at another surgery- I'm hoping whatever it is, that they can fix it in the Cath Lab.
So, another 2 weeks lost @ PCH... We have officially spent 1/2 of Grace's 9 month life in the hospital. Thank God we like this place!