We woke up this morning, played with Ellee for a while then Mike, Katie, and I made the trip to Rochester for her pre-operation appointment. Katie cried some on the way, not really sure why. We stopped at a rest stop to feed her then finished the trip in. We scoped out the hospital by car, had lunch, fed Katie again then went in for the 12:15 appointment.
We were supposed to have a hospital tour but that was cancelled due to the new flu guidelines. Only the patient and their two parents are allowed into the Children's Hospital. Since she is not yet a patient we couldn't see the area.
They took Katie's height, weight, an EKG, and temperature. They said Katie weighed 8.15, but her pediatrician said she was 9.4 last week. We are not sure if she lost weight, the scales are wrong or the pediatrician one was with a diaper. Weird.
Then we met the surgeon's nurse. She went through the details and consent forms. Katie can have milk until 1:30am, pedialite until 4:30am, then nothing. This is very different from her normal schedule so I am expecting tears in the morning. :( She told us to expect a full week in the hospital. If everything goes very well I can potentially feed Katie Sunday night.
Then we talked to a researcher on an NIH grant looking at the genetics of congenital heart disease. They want blood samples from the three of us and for us to answer some survey questions later in the week. They are looking at the genes of Mike and I and how that combination of genes resulted in Katie's defect. Of course, the biologists that we are, signed up. We are now officially NIH case numbers!
From there we went to the lab to have Katie's blood drawn. They needed six baby vials full. They pricked her heal and then dripped it out drop by drop. It took about 15minutes and she was screaming and kicking the whole time. I held her hands and looked in her eyes (when they were open). Mike held her other leg to keep her from kicking the technician. The technician said Katie was VERY strong. She didn't even know about Katie's DS. Apparently she is strong even for typical babies.
Then Mike and I each had our blood drawn for the genetic study. The technician that took our blood was a doctor from Albania. He was excited that Katie was getting the surgery and said she would be "excellent" after the surgery, not just "better". He said the surgery is very good and not to worry.
Then we went to the imaging department to get Katie's chest X-rays. Only one parent could go back, so I went. They had Katie straddle a harness, then pulled her arms up over her head, then closed a clear plastic tube around her whole body from waist to above her head. Once she was smushed in there, we left the room and took two X-rays one from the front and one from the side. She was not happy about that procedure either. Then we were done!
We are now in a hotel provided by the hospital for the night. Katie is eating and sleeping a lot recovering from the day. She isn't in a deep sleep yet and keeps fussing and falling in and out of sleep.
We are going to get up early in the morning, pack up the Jeep and head to the hospital. We will check in at 6:30am, and stay with Katie until 7:30 when they will take her back to the OR. We will wait in the pediatric cardiology ICU. They will not let anyone but Mike and I in there. Therefore, my mom is not going to make the trip to Rochester. She is going to stay in Ithaca with Ellee.
That was the excitement today. We are as ready as we possibly could be for tomorrow. I'm definitely ready to get the next 24 hours behind us and a new super duper heart!
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