I find myself completely pissed off. We just found out from Liams specialist doctor at Childrens Hospital that in her conversation with UCSF Pedi-Surg that UCSF said they thought he needed a Gtube that they were going to talk to us about it on our next CDH clinic in November. Basically they werent going to give us a heads-up; they were just going to ambush us. The doctors I thought I had an open communication and good relationship with and were supposed to trust. I feel like that trust has been broken. We told them several times before they released Liam the last time to do whatever they had to do to fix Liam so we didnt have to put him through this again. They just went ahead and released him already suspecting that he needed a Gtube. What makes it worse is that if they would have just kept Liam 2 more days then this would have already been done. We wouldnt have wasted 10 days at Childrens trying to figure out what was wrong. With a critically ill infant you dont have time. Liam was already way under weight and length that he is failure to thrive. Liam doesnt have any weight he can loose. I feel like Liam is a guinea pig for UCSF that they just want him for research and instead of doing whatever they had to to make him better theyre experimenting instead of jumping straight to the problem solver. Keep in mind I absolutely love UCSF. They know what their doing, they know his case. My problem is with the communication. All Ive asked over and over again was that they keep us updated and they do whatever they have to fix him. So maybe Im not mad but more disappointed. We also found out today that Liam needs a fundoplication. They take the top of the stomach and wrap it around the esophagus to keep him from being able to reflux his food. Theyre going to do this the same time they do the Gtube procedure that way they only have to put him out once and only recover once. I know its whats best for him. I know he needs it. Ive done the research and talked to the doctors. The mommy in me just wants to cuddle him close and cry with him. The analytical part of me wants to hand him over and say fix him. Its a good thing he can have the best of both because not only do I get to cuddle him and love him but I get to make them fix him.
About fundoplication:
In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter. The esophageal hiatus is also narrowed down by sutures to prevent or treat concurrent hiatal hernia, in which the fundus slides up through the enlarged esophageal hiatus of the diaphragm.
In a Nissen fundoplication, also called a complete fundoplication, the fundus is wrapped all the way 360 degrees around the esophagus. In contrast, surgery for achalasia is generally accompanied by either a Dor or Toupet partial fundoplication, which is less likely than a Nissen wrap to aggravate the dysphagia that characterizes achalasia. In a Dor (anterior) fundoplication, the fundus is laid over the top of the esophagus; while in a Toupet (posterior) fundoplication, the fundus is wrapped around the back of the esophagus.
The procedure is now routinely performed laparoscopically. When used to alleviate gastroesophageal reflux symptoms in patients with delayed gastric emptying, it is frequently combined with modification of the pylorus via pyloromyotomy or pyloroplasty.
The mortality rate is less than 1% which is the best odds Liam has encountered in his life. I am still very scared because I know how fast things can go wrong. I am trusting in God that he will be right there with Liam every step of the way and keep things on track. I am still requesting prayers for Liam. I am a firm believer that prayer works and there is never too much prayer. Please find it in your hearts to just send up a little prayer for Liam.
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