Jackson NICU Day 20 (03.13.12)
This morning I got a call at 8:30 am from NICU letting us know that Endocrinology would be at Jackson's bedside at 3:30 pm to teach us how to take his blood sugar. I arrived at Children's this morning at 9:30 am and sat with Jackson for some cuddle time. At 11 am his doctor's made rounds. They decided that as long as his next (2pm) blood sugar was good they would take him off the Dextrose completely. They also talked about taking him down to a 22 calorie formula and if they goes good, he can go back to Similac Sensitive with no added calories. They are going to get another platelet count and if that is good, they will circumcise Jackson. All this was great news and we were riding on cloud nine.
When I came back with Christopher at 3:00 pm his IV pump was turned off. We were so excited. Chris and I were telling Jackson that we only had 3 more sleeps until he came home.
At 3:30, Pamela came over to teach us how to draw Jackson's blood and test it. Chris and I were able to practice on each other and felt really comfortable with taking it.
Jackson's nurse said Cardiology called for us while we were in the class so she was going to page them to come talk to us. Shortly after she paged them a Cardiologist came by. He proceeded to tell us that we had two options for Jackson's care going forward. We could:
1.) Put him back on Propranolol and monitor him for a few more days, then talk about going home
2.) We stay until next Wednesday to monitor his heart
I felt like he kicked us in the stomach. I asked why we were told last Friday we would need to monitor him a week off the Propranolol and now we need to monitor him until next Wednesday. His answer was "That was never what we were thinking, I'm sorry that wasn't conveyed to you"
So my options are put my kid on a drug he OBVIOUSLY doesn't need since we have had no episodes or stay for another 8 days?!?!? I'm frustrated! Very, Very frustrated! I shut down with the doctor after that answer and didn't get all my questions answered. So Chris and I made a list of questions that we need answered.
- If he hasn't been monitored for even a week yet, why are we talking about adding another 5 days?
- Are there studies done that say monitoring for X amount of days after medicine has been stopped is a safe amount of time?
- Why are we added an additional 5 days?I'm going armed with my questions tomorrow, hoping I can get some answers.