Tuesday, November 22, 2016

Where Do We Go From Here?


I caught Jen without a smile, but she was enjoying gifts that the kids had made for her and Timmy to welcome them home. This is a mobile made of stuffed 'airplanes.'


Timmy was fussing, but I love all his faces. It is good to know even Larissa doesn't always have him in cheery spirits.


So, where do we go from here? 
First of all, where is here?
Here is with Timmy, at 7 months old with AV Canal Defect, a leaking valve, in heart failure, with one side of his heart too small, and very high pulmonary pressure. Here is just weeks after a pediatric thoracic surgeon who specializes in congenital heart defects told us that none of the surgical options we have talked about will work for Timmy. Here is arriving home from the hospital with a child getting fed through a g-tube, breathing with the assist of a nasal canula with oxygen, and taking several medications several times a day to help with his symptoms. The surgeon has told us that he expects Timmy has months to live rather than years.

So where do we go from here?
We go forward. Every life is precious and no life comes with guarantees. Doctors can be wrong, God can intervene, and in reality, this makes Timmy no different than our other children. We have no guarantees for any of them. We have friends who lost a young child, friends who have lost a teenager, and friends who have lost an infant. Life is not guaranteed, death is guaranteed for all of us, just with an unknown time table. So, we move forward. We care for Timmy and meet his needs the best we can while balancing the rest of the family as well. We continue to pray that God would perform a miracle for Timmy and bring healing to his heart that the doctors are unable to do. We continue to live our lives and try our best to do so for the glory of God. Really, just the same things God wants us to do in any of our circumstances.

It has been a long day with many interruptions. I started this post this morning. We met with the Visiting Nurses Association nurse that came to the house. I made a few trips to town to run errands and order and then pick up a missing medication. We called to make doctor's appointments, and took calls checking in on things and tried to get the rest of the details of being home ironed out. We got instruction on how to operate the oxygen and pulse sensor for Timmy. And we went about our normal business the best we can. On top of that, we fielded calls from the hospital, from doctors, from medical supply companies, from pharmacists, and from telemarketers (yes, those plurals all mean more than one of each). 


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