Ramsey is doing surprisingly well with his feedings. Every three hours he received 20 ml by bottle followed by 45 ml by through his NG tube. Speech and OT supervised the first two, but I was able to offer the rest on my own. It was discovered today that his tube was in his intestines instead of his stomach so they put a new one into the stomach.
His billirubin is steady...not any worse but not any better. To clarify on the status of the liver, it is fine in that it is not permanently damaged, but it is currently affected by the cholestasis. Cholestasis is any condition in which the flow of bile from the liver is blocked. They have done some blood work to determine the cause of this. So far, they haven't found the exact cause- it's likely that it's from the TPN, but to be safe they are doing blood work tomorrow for something called alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin deficiency is an inherited disorder that can cause lung disease in adults and liver disease in adults and children. I'm not aware of anyone else in our families that might suffer from this and I suspect that the test is being done just to cover all the bases.
Today I talked with a woman from the patient rep. department about our experience with the fellow the day Ramsey was born. The way Ramsey's condition was presented to us that day was completely inappropriate. We understood how serious things were, but being told that we could let him "die in our arms at West Penn or alone at Children's" showed no compassion and was unprofessional. Although I had already discussed it with some of the Children's Hospital NICU staff, I felt I needed to file a formal complaint. I hope that the fellow has learned something from the experience because I would never want anyone to go through what we did. What if we, or someone else in a similar position, would have chosen the first option? If we had, Ramsey would not be with us today, 42 days later, doing exceptionally well. Also, I think Children's needs to know about the incident because they don't deserve to be judged based on the fellow's behavior. With the exception of her, we have had nothing but praise for the hospital and the care Ramsey has received!
His billirubin is steady...not any worse but not any better. To clarify on the status of the liver, it is fine in that it is not permanently damaged, but it is currently affected by the cholestasis. Cholestasis is any condition in which the flow of bile from the liver is blocked. They have done some blood work to determine the cause of this. So far, they haven't found the exact cause- it's likely that it's from the TPN, but to be safe they are doing blood work tomorrow for something called alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin deficiency is an inherited disorder that can cause lung disease in adults and liver disease in adults and children. I'm not aware of anyone else in our families that might suffer from this and I suspect that the test is being done just to cover all the bases.
Today I talked with a woman from the patient rep. department about our experience with the fellow the day Ramsey was born. The way Ramsey's condition was presented to us that day was completely inappropriate. We understood how serious things were, but being told that we could let him "die in our arms at West Penn or alone at Children's" showed no compassion and was unprofessional. Although I had already discussed it with some of the Children's Hospital NICU staff, I felt I needed to file a formal complaint. I hope that the fellow has learned something from the experience because I would never want anyone to go through what we did. What if we, or someone else in a similar position, would have chosen the first option? If we had, Ramsey would not be with us today, 42 days later, doing exceptionally well. Also, I think Children's needs to know about the incident because they don't deserve to be judged based on the fellow's behavior. With the exception of her, we have had nothing but praise for the hospital and the care Ramsey has received!
I hope that the fellow gets a chance to see how well Ramsey's doing and think back on the first night. Ramsey's a fighter, and following him those first few days especially was an amazing testament to that. That little guy is my hero. All the best to you guys!
ReplyDeleteThe story of what that guy told u made me cry and I can't imagine how hard that was. I'm SO thankful he was COMPLETELY wrong. Maybe God will touch his heart through Ramsey's healing. GOD IS SO GOOD!!!!!!!!!!!! :)
ReplyDeleteGlad you filed a report. I had an incident with a doctor that I should had filed a report on her, but didn't. Now I regret it, but didn't even think about doing such a thing until it was way too late. I hope everyone learns something from the way that was handled, especially the individual directly involved. One day, Ramsey will have his story to tell everyone of how his parents were told to choose where he should die, but God had a different plan in mind!
ReplyDeletePaige Lincoln
You continually amaze me with your strength and courage, Lisa. Your follow-through in reporting this doctor may save another family from making a big mistake based on her lack of compassion and faith. Keep up the faith!
ReplyDeletePraise God for giving you the courage you needed to do this. You know maybe this was God's way of teaching this fellow the right thing to do.I think she needs our prayers also.. we should be praying that this never happens to another family. Praise God for being with Ramsey and also with you and Dennis. Remember GOD loves you and so do I.
ReplyDelete