Caden has had a good night. He started on clear liquids last night via his g-tube. He has been getting an once every three hours just to make sure his system tolerates it. He seems to be doing fine with it and he will probably get some formula mixture later this morning.
I have been asked a couple of times why Sherry and I do not seize this opportunity to stay home and get some rest. Well, I have a story from yesterday that explains very clearly why we stay with Caden 24/7 while he is in the hospital. It was about 7pm last night when Caden’s nurse came though the door with pedialyte, bottle , and nipple in hand. She had been instructed by a doctor to give Caden his clear liquids by mouth. This doctor had never seen Caden before and the nurse had tried to explain to him that Caden was not able to swallow. He told her that his swallowing problem had been fixed and to give him the liquids and all of his medicine by mouth. He was wrong.
Sherry was standing by Caden’s bed when the nurse came in with the bottle and nipple in hand. Sherry’s eyes got very big and she asked what is that supposed to be for. The nurse explained and Sherry in turn asked to speak to this doctor. He came in a few minutes later with an “I am the doctor here and you should not question my judgment” attitude. Sherry tried to explain to him that the surgical procedure that Caden had this week was not to correct swallowing problems, but was rather only addressing the massive reflux problems. She explained that this surgical team was not even the people who Caden would see to get his swallowing problem treated. This doctor would hear nothing of it. He refused to change the order to feed Caden by mouth. He said that he needed to talk to the surgeon who knew and had been working with us. He said that for now he would go along with giving the fluids by g-tube since it would really make no difference in the process of testing how Caden’s stomach was going to react to the food. Just a note: This was not a student or resident. This was the attending physician on duty last night from pediatric surgery.
Sherry ran into this doctor on the way out of the hospital last night and he said that he had spoken to Caden’s regular surgeon over the phone and that things had been cleared up. He had removed the order from Caden’s record to give him things by mouth.
I still wanted a shot at him once I got here about an hour after all of this happened. I was not happy with how upset he had made Sherry. She was flushed red like she gets when she is extremely upset or nervous. I still plan to voice my displeasure with a senior member of his staff. He needs to realize that there are parents who know their children’s health better than their own. Ten years of education and even more on the job experience does not make you immune to making mistakes. In this case, his mistake could have easily caused Caden to aspirate and possibly get pneumonia.
This is a prime example as to why we stay with Caden even when he is hospitalized. He still needs to be suctioned at least every hour or two even when he is sleeping. His secretions collect in his throat and start to gag him if he is not suctioned out every so often. The nurses up here are assigned multiple patients and can not monitor Caden as much as it takes to make sure he does not aspirate on his secretions.
On a positive note Caden just went a five hour stretch without any pain medicine. He is allowed to get it as often as every two and a half hours. He has been resting good.
Sherry took time to go out to dinner with a group of mom’s from the church. They had to call and remind her due to all the excitement with the doctor last night.
Lesson for the day: No one is going to care for your child the way you do. Even the nurses who have likely spent more time with Caden than anyone else outside of our immediate family gave in to the pressure of the doctor yesterday.
Want to read more technical stuff? Here are some links:
Nissen fundoplication
Dysphagia
Achalasia (Possibly a better description of Caden’s swallowing problems than anything I have found.
Thanks again for your pray and support.