First Central Line

The morning of October 6, 2010, Brent, I and Daniel woke up bright and early to head to Children's Hospital for an early morning surgery.  After much thought, many questions and much prayer we had given the okay to Daniel's doctor to have a central line placed so that Daniel could receive a continuous IV of epoprostenol to help control his pulmonary hypertension.  We knew from the beginning this medicine would not be a cure, but would be something that would give him a longer, better quality of life.  Learning about this was intense and reading about the care for this on going treatment was overwhelming.  The phrase "could result in death" was one I never became comfortable with nor took lightly.  In fact, those intense, overwhelming realities would be a part of our life for the next 5 1/2 years.

This was Daniel and I waiting for him to go back for surgery the morning of October 6th...

We had come to this weighty decision because our little Daniel was doing so poorly.  He could not cry without turning blue.  At just 9 months of age we had already called 911 over a dozen times, not all resulted in ambulance rides, but many did.  I would have to go back to his caringbridge and count to know the exact number.  So by this time, Brent and I felt that the benefits Daniel could receive from this medicine outweighed the risks and possible complications associated with it.  Knowing what we know now, we most likely would have advocated for it even sooner.  This same central line that helped sustain his life for 5 years and 6 months would be the very thing that took his life on April 1, 2016.

The day that Daniel had his line placed went okay.  In addition to having his central line placed, he also had surgery to have his MIC-KEY button placed for food supplements.  From 3 months-9months he had an NG tube taped to his face.  He needed this, as the work of drinking milk wore him out.  His Pulmonary Hypertension made even eating a real challenge.  So we were all excited that as a result of this surgery we would be able to see those chubby cheeks without extra stuff stuck to them...even though he was still cute as could be...

The night that followed his surgery was dark and grave.  He almost did not survive, and most, if not all of those caring for him thought he would die.  But I will save those details for tomorrow...  

The gift of 5 years and 6 months that followed is one I have not ever taken for granted, but my heart still cannot help but to have longed for even more time with him.