Tuesday, September 16, 2014

NO GOOD CHOICE...

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? 

I choose the the granted wish.

I choose the magic pill. 

I choose to sacrifice myself for him. 

I choose the miracle. 




4 comments:

  1. HEAVEN'S VERY SPECIAL CHILD

    A meeting was held quite far from Earth!
    It's time again for another birth.
    Said the Angels to the LORD above,
    This Special Child will need much love.

    His progress may be very slow,
    Accomplishments he may not show.
    And he'll require extra care
    From the folks he meets down there.

    He may not run or laugh or play,
    His thoughts may seem quite far away,
    In many ways he won't adapt,
    And he'll be known as handicapped.

    So let's be careful where he's sent,
    We want his life to be content.
    Please LORD, find the parents who
    Will do a special job for you.

    They will not realize right away
    The leading role they're asked to play,
    But with this child sent from above
    Comes stronger faith and richer love.

    And soon they'll know the privilege given
    In caring for their gift from Heaven.
    Their precious charge, so meek and mild,
    Is HEAVEN'S VERY SPECIAL CHILD.


    by Edna Massionilla

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  2. Dear Jill and Matt,

    Most people agonize over choices every day--what color to paint a room, what to wear for that special occasion, whether or not they can afford to take that trip. Your choices are far more complicated.

    The best thing that you have going for you is the depth of your love for your children. Caden would never have come as far as he has if it wasn't for that. He is swaddled in your love and draws his strength from it, as do Emily and Ethan.

    You don't get to make the fun choices, but whichever choices you make, you make for the best of reasons - the hope that your son can find ease and have a good chance for a better life. Whichever one you choose, know that you have chosen the best of a difficult bunch. Caden, Emily and Ethan know love - great, enduring, unconditional love. Please add my prayers and love to your arsenal. You are wonderful parents.
    Love, Becky (Perrone)

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  3. jill and matt. you are truly the greatest parents. you advocate for your three children and that is very important. I am a special education major and you two go above and beyond than anyone in the field of disabilities. You always look at the abilities and skills of Caden and that is what will help him most. I commend you with all that you do. the world needs more people like the two of you.

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