Why is it when it comes to Caden's care there are never any good options? Just once I would love to hear a doctor say "Would you like the magic little pill that will make this all go away?" or "I can make your wish come true and take away his suffering."
Now I know this is not realistic, but I am tired of having to consider options where any choice made has so many negative implications.
I was visiting a friend at the Children's Hospital of Philadelphia who's daughter is going through yet another round of chemo. She, too, said that there are no good choices. Her options, like mine, all ran the risk of doing significant harm in their effort to help.
So what choices were we given? Well...Caden met with the top general/thoracic surgeon at CHOP regarding his slipped Nissen and hiatal hernia. This is a surgeon who's care I have been trying to get Caden under for over a year and it is sad that it took his Nissen to go bad to get him to take an interest in my son. Nonetheless, Caden is now under his care.
He said that based on Caden's studies, the Nissen has slipped and he has a moderate hiatal hernia. The problem with this is that it will get worse and something needs to be done. What concerns him is that Caden is so very medically fragile. As I was explaining Caden's extensive medical history, the surgeon just shook his head in disbelief. He too, as so many doctors have before him, said that he has never seen a child like Caden.
So choice number one...do nothing. The surgeon did not recommend this as the hernia would get worse and permanent damage could be done.
Choice number two...have the Nissen reversed. At first we liked this option as we have never been happy with the Nissen. It was done to stop Caden from vomiting and it never worked. One month after the surgery, Caden began vomiting again and has continued to do so for the past two years. But then the surgeon explained that if we have the Nissen reversed, Caden would have to be fed via J-tube. This would mean no more blenderized diet, no food in his stomach and he would have to go back to continuous pump feeds. I never liked when he was J-tube fed. It is so unnatural and can cause damage to the intestines. It would be like taking ten steps backward and that is the last thing I want to do as Caden has taken very few steps forward over the past few years.
Last option and the one the surgeon said he would do if it were him...have the Nissen reversed and have a Thal done. This is very extensive surgery which could last over four hours. A Thal is when they take a flap from the stomache and fold up against the esophagus to reduce reflux. He said it would not stop Caden from vomiting but will help keep him from damaging his esophagus. On top of performing a Thal the doctor would stitch his hiatus to hopefully avoid another hiatal hernia.
We have chosen option number three but it comes with many risks. The surgeon said that he feels Caden is too weak for the surgery at this time. To quote him "Caden's growth chart sucks". He wants to see Caden gain weight before performing this risky surgery. He is also concerned with Caden's connective tissue disorder. He feels this could make surgery riskier in that Caden's tissues are fragile and can tear easily. The surgery can usually be done laproscopically but if he encounters problems he may need to "open Caden up" and this could be especially dangerous for a medically fragile child with a connective tissue disorder.
Lastly, the surgeon is concerned with Caden's heart. We find this interesting because we can't seem to find a cardiologist who feels the same way. Caden has an appointment in December with a cardiologist at CHOP who specializes in some of the cardiac issues we feel Caden has but we don't know if Caden can wait that long for surgery. Caden has severe Dysautonomia which has affected his overall well being. His heart races, he needs to lay flat all the time, his blood pressure is either too low or too high, he does not feel pain and he has trouble regulating his temperature. The surgeon feels these issues should be addressed before surgery.
So here we are having to make a decision with no good choice to make. Anything we decide to do involves many risks. It is our job as Caden's parents to do what we think is best but we are not even sure what that is anymore. I regret so many choices we have made in the past and I fear we may end up doing the same here.
As it seems we will be moving forward with having the surgery in the near future, it is scary to think that this will be Caden's thirteenth surgery in just over three years. His little, fragile body already looks like it has fought many battles. There is not much room left for more scars. How much more can he endure? How much more does he have to endure?