Passing the ball....again

Today the surgeons officially wipes their hands of Liam. Atleast thats what it feels like. We were officially handed over to the hospitalist today without warning. The surgeons are too scared to touch the diaphragm because if its damaged and stops working then we have more problems. Pulmanologay wanted to do a ct scan and a bronchioscope but because he has to be intubated theres a high risk of liams lung colapsing. The hospitalist is trying to fast track discharge. Pulmanolohist want him weaned of oxygen then discharged as well. Theres nothing left UCSF can or will do for us. Meanwhile Liam is still having respitory distress several times a day and throwing up when the distress isnt immediately treated. Heres some background on Liams lungs: Liam was born left CDH. Which means his left lung is reallh bad off and his left diaphragm is paralized and useless do to the herniation. The left lung looks big and the left diaphragm has been pulled down low. Now the right lung is Liams good lung. The right diaphragm is his only working diaphragm. The right diaphragm is shaped like an upside down cup pushing into the lungs and is also higher than normal. They arent sure if his right lung is being cramped in this small space causing his respitory issues. Liams right lung is also the lung that keeps colapsing. Theres also some scaf tissue on the bottom of his right lung and no one seems to know why. Thats tbe abrieved version. Keep in mind with all his respitiry problems they still want to seng us home. Frustrating. They are going to do another xray and a ultrasound so see if they see anything that can give answers. Then when he is weined from oxygen, which they want within 2 days, they will hook him up to a pulse ox machine that will record Liams satting minute by minute so they can see how he sats while sleeping. The discharge the following day. They havent done anything that valley childrens couldnt and havent done. We brought him up here because we were told that he needed to have surgery and it was in his best interest to come here. Well we got a copy of the bill for Liams hellicopter ride here and it cost just shy of $49,000. Plus yhe $500 to get me up here with him. I dont know exactly how to explain how i feel about this except pissed, frustrated, angry. I was lied too. Thats all there is too it. And now Liam is being fast tracked home just to end up at another hospital. I appriciate that they saved Liam at birth, and I will always be thankful for that. But it ends there. This will be the last hospitalization at UCSF. The next time we come to San Fransisco it will be on vacation and we will only return to UCSF to visit a few of the nurses that have forever touched out hearts. Its bitter sweet. The supposed CDH specialist are here yet were being told by them the same thing childrens says "we just dont know. Hes an anomoly. He doesnt follow any of the typical CDH paths". I know my son is an anomoly but for him to stump even the supposed specialist just pisses me off. I just dont have any confidence or faith left in yhis hospital, its doctors or any other doctor for that matter. We need Gods healing touch, his guidance, strength and patience. Our family has spent 95% of the time since January seperated. Its unfair to all of us, especially Lanie. We need our family together. Please pray for Liam and our family. Thank you and God bless Sent from Yahoo! Mail on Android