Home Is Where The Heart Is

Posted Jul 2, 2011 5:49pm

Oh, so much to fill everyone in on............Where do we begin?

We saw Dr. Abdallah on the 29th of June. He ran more tests and it seems as though the treatment is working!!! Praise God!!!!!
Kaden's heart is within normal size limits now and his tricuspid valve looks better. Overall, from a cardiac standpoint, Kaden is looking much better. He still has rough nights, but his heart is so much better than it was. He is still working on eating food, and is still happy. So here we were listening to this humble man telling us that our son will continue to improve regarding his heart, but that he must continue treatment. We are certainly not out of the woods, but as long as we continue doing what we're doing he should continue to improve.

Here's where it gets rough.....we must continue to stay at sea level permanently in order for Kaden to remain on the medication. We had a feeling when we started this journey back in January, that Kaden would need to be at sea level for a while, but didn't know it would be for good. His lungs are so damaged and his oxygen requirement is higher than it ever has been before, even though we're at sea level, due to the treatment that is saving his life. Ironic? Yes. The medication continues to rear it's ugly head from a pulmonary standpoint, and we have to watch him very closely. It's more than apparent that he must stay here if he's going to have a fighting chance at getting any better and that we need to find a specialist now for his lungs.

We've decided to live in South Carolina. Brian found a good job here and my brother and his family live here. Their support is indescribable. Brian's new job is beyond difficult, but we just couldn't stay apart any longer. He works so hard for this family and personally, as a wife, I couldn't ask for a better team mate. God must have known that when he blessed us with our Little Man. We now understand beyond words that a family should be together as much as possible, and it was financially prohibitive for him to keep working in Colorado. It was so painful for everyone to be so far apart.

As for nursing, our nursing agency in Colorado discharged Kaden before we even had the chance to see the doctor, because he missed his annual Hospice meeting. Well, pardon me, but....duh! How were we supposed to be there for the meeting if we are stuck on the east coast? If it weren't for Mom, Kaden wouldn't be here right now. I'm serious. There is no way i would've been able to take care of him 24/7 for 6 months. She stood by my side every difficult and scary moment we had until Kaden was stable enough for her to finally return to Colorado. We still don't have any nurses and I'm tired. So is Brian. However, we will not let this bring down our spirits. Our boy is going to survive. Nothing else matters when you compare it to that kind of news.

Now for the really yucky stuff- Kaden still has gastro-paresis and needs a specialist and medications for that. He still has many respiratory challenges, and many hurdles ahead of him. He must have surgery soon for the cleft in his larynx and trachea. The recovery from that surgery is awful. It will require a trach, ventilator, and an entire year for him to learn how to swallow again. But come on, I think we can all agree that he is strong. God gave him strength this entire time and will continue to do so. The Lord continues to bless us with Kaden's presence. Is there a greater gift than that? I think not.

As for now, we have to start all over again. We are so grateful for storage and consignment stores. New house, new doctors, new friends....etc. We must build a new team of specialists. We must figure out custody arrangements with our older, phenomenal children. We must find a new support system here. Thank God we have John and Kelly. We even made a friend during a visit down here. Her name is Susie. Kaden made friends too. They are twins named Lila and Adrien. They don't point and laugh and make fun of him. They except him for who he is and that makes him happy. They all bring sanity to our very unique chaos that we call life.

There is still so much to coordinate, but as a team...Brian and I will continue to fight for Kaden.

Despite the overwhelming joy we feel for improvements regarding our son, we also feel sadness and fear. We will miss being with the older children as often as we were. We hurt for them, as this affects them tremendously. It goes without saying that all three of them are resilient and amazing. They are our hearts, just as much as Kaden is. We are blessed that our ex spouses are so willing to help and support us for the best interest of all four children. I'm already homesick and it's only been 6 months. Now I have to say "Wow, I don't live in Colorado anymore". I'm still trying to accept that fact.
We will miss Colorado and know that there is still so much to overcome. We will miss our family, friends, and those who helped us get here; and I don't mean "here" in a physical state, but an emotional place. It's so strange to know that the last time we saw all of your faces, will most likely be the last time. Or perhaps I should say at least for now that is the case. Many things will have to change for Brian or myself to ever visit again. That in itself is hard. All of this had to be done though to save the life of our son. Hands down, it was all worth it.

We stand beside his bed at night and pray for him and with him. He is still so tiny, but his spirit is large and in charge.

For Kaden;
May fear, rejection and pain no longer reach you.
May your spirit grow bold for what you are called to.
We love you more than you'll ever know.
And will raise you up when you feel alone.

Love, Brian and Julie AKA Daddy and Mommy