Copied and pasted from Liver Familes.
Well the appointment was frustrating to say the least. When the appointment was set up we were told that Stanford had spoken with Dylan's Kaiser doctors and that everyone agreed that it was time to move forward to get Dylan listed inorder to start the work up on Noah. We were told that we were going to meet with the surgeon. When we arrived at Stanford the tx nurse said she would be back with the surgeon and his fellow. When they came back it was just his fellow. I knew things were not going to go well.
The fellow began by getting the normal information; Dylan's meds, background, current symptoms. He then proceeded to go over with us stats on success of the Kasai procedure and told us that Dylan may even make it until he was in his 20's before needing his transplant. Told us that his labs were great and his other symptoms seemed like they were under control. At this point I got VERY upset. We had already discused with the surgeon that Dylan had a max of 2 years before he would need one and since then Dylan has had cholangitis and his bile salts are elevated again. As far as his symptoms being "under control". My husband and I itch Dylan to sleep EVERY night. He itches all day. He has scratches all over his body. He can't breath. Whether that be his asthma or lack of lung capacity is still to be determined. I know that despite every effort with albuterol, qvar, and pulmicort he still get out of breath just moving around. As I started to cry this "doctor" looked at me and told me I needed to relax. RELAX? This is my son. His life. His quality of life. I have every right to be upset when he is obvioulsy discounting my son, his condition, and his symptoms. He then proceeded to tell us that one out every ten babies going through transplant die on the table. I know these stats are correct. I know this happens, but what irritates me is that I seriously doubt that if Dylan needed a transplant tomorrow he would be giving me those same stats. In that case the glass would be half full. He also said that we would be trading one set of problems for another. That is obvious. It was apparent to me that he was attempting to scare us out of tx. We have never pushhed for a tx. However, I will not let my son be ignored or fall through the cracks. I will not my son get to the point that he needs a tx yesterday. I will do everything in my power to avoid that ( I know sometimes it can't be avoided). I stopped talking and let my husband finish things up. Needless to say the surgeon never came in. The fellow left and the nurse came back in. She informed us that the surgeon left due to a family emergency. This is the second appt. where we were supposed to see him and he wasn't there. The second appt. where an intern/fellow has been the one gathering info on my son. The last time the intern tried to diagnose dylan's itching as eczema and not liver related. He was ten feet from Dylan. Never got any closer. The redness on Dylan's cheeks is from broken blood vessels and in no way is dry, rough or scaley. When the nurse came back she said she would have us back in two weeks to meet with the surgeon and that they would be discussing Dylan at their weekly meeting on Friday. Then that was it. I have NO issue with interns/fellows being in the room and watching and learning. My issue is when they come in and act as if they are THE doctor.
So I guess we will see. I know Dylan "Isn't that bad" and "They've seen worse". His belly "could be bigger" and his liver "could be harder". What they don't seem to grasp very well is that for that to happen Dylan will get more sick. Be worse off and they will hear me kick and scream the entire time. I don't want Dylan transplanted tomorrow. I don't want it 6 months from now. I just want to be ready. I want to know Noah is a match and if he isn't I want to know who is. I need to be prepared. They have not seen the last of me. I will not go down with out a fight.
-Amber
Well the appointment was frustrating to say the least. When the appointment was set up we were told that Stanford had spoken with Dylan's Kaiser doctors and that everyone agreed that it was time to move forward to get Dylan listed inorder to start the work up on Noah. We were told that we were going to meet with the surgeon. When we arrived at Stanford the tx nurse said she would be back with the surgeon and his fellow. When they came back it was just his fellow. I knew things were not going to go well.
The fellow began by getting the normal information; Dylan's meds, background, current symptoms. He then proceeded to go over with us stats on success of the Kasai procedure and told us that Dylan may even make it until he was in his 20's before needing his transplant. Told us that his labs were great and his other symptoms seemed like they were under control. At this point I got VERY upset. We had already discused with the surgeon that Dylan had a max of 2 years before he would need one and since then Dylan has had cholangitis and his bile salts are elevated again. As far as his symptoms being "under control". My husband and I itch Dylan to sleep EVERY night. He itches all day. He has scratches all over his body. He can't breath. Whether that be his asthma or lack of lung capacity is still to be determined. I know that despite every effort with albuterol, qvar, and pulmicort he still get out of breath just moving around. As I started to cry this "doctor" looked at me and told me I needed to relax. RELAX? This is my son. His life. His quality of life. I have every right to be upset when he is obvioulsy discounting my son, his condition, and his symptoms. He then proceeded to tell us that one out every ten babies going through transplant die on the table. I know these stats are correct. I know this happens, but what irritates me is that I seriously doubt that if Dylan needed a transplant tomorrow he would be giving me those same stats. In that case the glass would be half full. He also said that we would be trading one set of problems for another. That is obvious. It was apparent to me that he was attempting to scare us out of tx. We have never pushhed for a tx. However, I will not let my son be ignored or fall through the cracks. I will not my son get to the point that he needs a tx yesterday. I will do everything in my power to avoid that ( I know sometimes it can't be avoided). I stopped talking and let my husband finish things up. Needless to say the surgeon never came in. The fellow left and the nurse came back in. She informed us that the surgeon left due to a family emergency. This is the second appt. where we were supposed to see him and he wasn't there. The second appt. where an intern/fellow has been the one gathering info on my son. The last time the intern tried to diagnose dylan's itching as eczema and not liver related. He was ten feet from Dylan. Never got any closer. The redness on Dylan's cheeks is from broken blood vessels and in no way is dry, rough or scaley. When the nurse came back she said she would have us back in two weeks to meet with the surgeon and that they would be discussing Dylan at their weekly meeting on Friday. Then that was it. I have NO issue with interns/fellows being in the room and watching and learning. My issue is when they come in and act as if they are THE doctor.
So I guess we will see. I know Dylan "Isn't that bad" and "They've seen worse". His belly "could be bigger" and his liver "could be harder". What they don't seem to grasp very well is that for that to happen Dylan will get more sick. Be worse off and they will hear me kick and scream the entire time. I don't want Dylan transplanted tomorrow. I don't want it 6 months from now. I just want to be ready. I want to know Noah is a match and if he isn't I want to know who is. I need to be prepared. They have not seen the last of me. I will not go down with out a fight.
-Amber
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