Oh Bella! Where to begin? On Friday I took Becca to the doctor. While I was there I asked him at what point should I call cardiology about Arabella's respiration rate? She had been breathing faster and harder. I think it's because they took her off the aldactazide. He said if she was constantly 80 to give them a call. Well, Sunday (of course a weekend) came and her respiration rate was 80 at resting and higher with any activity. So we went over to Dr. Geddie's house. He is our friend, but also a neonatologist. He looked and listened, then called his friend, a pediatric cardiologist. They decided she needed to come down to the ER of Texas Children's Hospital.
We went home and called my sister, Asia. She graciously dropped everything and ran over. Thank you so much Asia. We really appreciate it.
We drove to Texas Children's - what a long drive when you are scared. By the time we made it into triage her O2 saturation was at 60%. We immediately were given a room. She was given oxygen right away. They did a chest x-ray and drew tons of blood. They put 2 IVs in. They gave her lots of good lasix. Color and life flowed back in and beautiful Bella came back to us. They admitted us to the 15th floor - cardiology.
The next day she had a echocardiogram and continued to do well. She only had one blue spell. I was hopeful we could go home.
Tuesday after asserting the fact that I really wanted to go home and couldn't she just go home on oxygen, Bella decided to show me that she wasn't quite ready to leave the hospital setting. She proceeded to go back into respiratory distress, dispite her oxygen and all her meds. Her altactazide was re-started on Tuesday as well. She continued her downward spiral to the point where she couldn't tolerate any feeds (her O2 dropped to 69 even on oxygen and it took her almost an hour to recover). The doctors decided she needed more care and moved us down to ICU. Jason and Becca were able to come see me - which was WONDERFUL! We got down to ICU and realized that there was no where for me to stay overnight. There is one chair in the room. It was suggested that I go home and sleep (something I hadn't done since Saturday). The nurse was very attentive so I decided to go home for the night. When I called in at 2AM, Bella was doing well.
Wednesday - Lizzy's 6th birthday. I had to see Lizzy. Guilt either way - go see Arabella or go see Lizzy. I drove up to my Mom's (where Lizzy was staying) and was able to spend a little time with the kids and open presents with Lizzy. (Her Daddy is going to get her and take her to dinner tonight.) This morning they were able to work Arabella into the schedule to have a cath done. This measured the pressures in her heart, lungs, and the blood vessels to her lungs. You can read more about it here. They wanted to have this done before her heart surgery. Because her lungs are in such bad shape, they wanted to know as much as they could, so they would be prepared. As expected she is over-circulating her blood and her pressures are high. The cardiologists will take those results to the surgeons. I personally am hoping for an earlier surgery date. She is currently intubated and sedated. Poor, sweet baby. She has to go through so much.