Decision Made!

Posted Sep 12, 2010 12:05pm

Good morning everyone,

Let me start by saying we received a final word from Dr.Abdallah. Kaden has been formally diagnosed with Hyper Adregernic POTS, severe cardiac arrythmia, and total Parasympathetic Failure Dysautonomia. We finally have some answers. Unfortunately, due to his young age, there is not much we can do at this point. He must be put on some trial medications and be followed very closely by his entire team. Dr. Abdallah can't guarantee by any degree that Kaden will have success with any of these medications or that the altitude change at this point will extend his life. Kaden is Dr. Abdallah's sickest patient at this time and he is unsure of why Kaden is so severe. That all being said, it became evident that we can't control what happens, cure our son, or make it go away....all we can do is treat his symptoms and keep him happy.

After many phone calls and conversations with his local doctors, Dr. Abdallah agreed to allow Kaden to live here and for us to develop a "team" approach with the local doctors. Dr. Abdallah will lead the team and guide them as necessary. They agreed to be compliant in this regard. We will be consulting with a Molecular Geneticist, a Pulmonologist, 2 Cardiologists, a Gastroenterologist, 2 Neurologists, and his pediatrician
So....

Brian and I made a very difficult decision to allow Kaden to have a quality of life (however long he may live), rather than extending his life because WE want him around. Kaden's life medically speaking may improve at a lower altitude, but his quality of life would be miserable. Trust me, this decision was not made lightly and we had to include our entire families best interest.

We went to a funeral yesterday that helped confirm our decision is what appears to be God's will. God doesn't want His children to hurt. He would want our family together. The entire situation is in His hands.

We had a small birthday celebration for Kaden and realized that his siblings, his house, his nurses, his dogs etc. are what "keep him going". This is not to say that we won't reconsider moving in a couple of years, or for that matter, sooner if this "team" approach doesn't work However. at this point, all of his docs truly feel that Kaden will fight a lot harder where he can emotionally thrive. We all feel as though he will just "give up" if we tear our family apart and move him across the country.
We thought the move would be necessary, but weaning Kaden off of one of his meds has helped his vitals. He is still experiencing severe life threatening episodes, but he did while we were there anyways. That will not change without several different meds, procedures, and time. Many changes to his treatment will take place on this journey.
Kaden and I will be using his fund to travel to and from Virginia as needed starting October 1st-14th. We will visit with his local specialists and come up with an action plan to give our son the treatment he deserves while maintaining his emotional needs. Please feel free to research the environmental and emotional roles that are directly associated with Dysautonomia.

This is the question we had to ask ourselves....
!. Would we be better parents if we moved our son to a lower altitude, closer to the specialist , fully knowing that his siblings and nurses would be left behind....along with all of the other changes that would occur...just to extend his life?
OR
2. Would we be better parents to give our son the happiest most fulfilling life surrounded by the people he loves and trusts....even though his life may be short?

Please respect our decision and know that Kaden's emotional well being plays a huge factor in staying here. Brian and I just hope that we don't ever regret this decision. He is still unstable and losing weight quickly.
Please keep our family in your prayers.