Yesterday Gage went back for another echo after the big jump in the gradient in the mitral valve last week. We didn't have an appointment to see Dr. El-Said so I patiently waited 3 hours (haha) to text her for the results. She called me within 5 minutes and not surprisingly but unfortunately she didn't give me the best news. "I'm starting to not like it" was what she said. The gradient is still somewhere between 10-14 so you can say it is the same at 12, but she said it looks worse on the echo. She said she made a CD of all 5 echo's we have had since returning mid January and sent them out to Dr. Tworetzky (Boston) this morning. We probably won't hear anything back until Monday, so we wait. Ugh. Her thinking is that something will need to be done in the near future. And Gage will be back for another echo next Tuesday, he is on a weekly schedule.
The G-tube is on indefinite hold for now. If we did that it would contaminate heart surgery if it was needed. So we are just sticking it out with the NG for now. It isn't too bad since Gage has been tolerating the continuous 40ml/hr. It stinks having him hooked up 24/7 but at least he isn't constantly vomiting! She also said that there is no way she would put him under right now. His blood pressure is too low and besides the risk of just that and being put under she said we would never get out of the hospital because of his low blood pressure.
That is all fine and dandy but if we need to do another heart surgery he is still going to have really low blood pressure?! I suppose we cross that bridge when we get there.
I am trying really hard to not jump to conclusions. Although it seems we are heading for another open heart surgery, this would be the 4th and Gage is only 8 months old, and that would mean leaving for Boston as well. Until I hear the words I am trying hard really hard to just focus on the fact that we are home. In our own home and playing with toys and taking baths and sleeping in our bed altogether. I am holding and kissing and carrying him around everywhere I go. This makes me smile and this is what keeps me going against the impending doom that wants to come in and rip my world apart.
The G-tube is on indefinite hold for now. If we did that it would contaminate heart surgery if it was needed. So we are just sticking it out with the NG for now. It isn't too bad since Gage has been tolerating the continuous 40ml/hr. It stinks having him hooked up 24/7 but at least he isn't constantly vomiting! She also said that there is no way she would put him under right now. His blood pressure is too low and besides the risk of just that and being put under she said we would never get out of the hospital because of his low blood pressure.
That is all fine and dandy but if we need to do another heart surgery he is still going to have really low blood pressure?! I suppose we cross that bridge when we get there.
I am trying really hard to not jump to conclusions. Although it seems we are heading for another open heart surgery, this would be the 4th and Gage is only 8 months old, and that would mean leaving for Boston as well. Until I hear the words I am trying hard really hard to just focus on the fact that we are home. In our own home and playing with toys and taking baths and sleeping in our bed altogether. I am holding and kissing and carrying him around everywhere I go. This makes me smile and this is what keeps me going against the impending doom that wants to come in and rip my world apart.