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Daniel Updates, 12/12/18


We have had a huge couple of days!! Daniel has been weaned off his IV drips; he is totally off milrinone and precedex! He also restarted G-tube feeds today. Since his Glenn, he has had an ND tube, a tube that went through his stomach to his duodenum (part of his intestine), but now he is back on gastric feeds. They had put the ND tube in because they were worried he would aspirate because of his paralyzed vocal chord if he spit up. Aspiration can cause pneumonia and would be a major setback.

In order for him to go home, his oxygen needs to be at or below 1 liter (he is currently at 4 liters), and he needs to be on all oral meds. His diuretics are still given by IV, so the next step is moving those to PO (through G-tube). They are also continuing to slowly wean his liters of oxygen. So far he has tolerated everything beautifully! No issues. Everything is good.

He now only has ONE IV!!! Our life up here is much simplified! I have been going around in a semi-manic state, on cloud 9. Dr. Meliones told me three months ago, “You’ve got to find a way not to ride the emotional wave. There will be ups and downs. This is a marathon, not a sprint. If you can stay on an even keel, it will really help you in the low moments.” He told me this before Daniel had had the Norwood, when I was a couple of weeks postpartum. I was a hormonal mess who had just given birth to a premature baby with half a heart; I had already watched him endure his first surgery, the pulmonary banding. I thought we had been through a lot. Looking back, I now realize I had NO IDEA. There is no way to prepare for this. No journey is the same, and ours has been tough.

I now realize that it is impossible for me to not ride the emotional wave. In all fairness, his advice was very wise and helpful. In the dark moments, I have remembered his words, tried to keep in mind that Daniel’s lows are part of his journey. Seeing Daniel happy, not in pain, being able to hold him without worrying about an arterial line. It is intoxicating. It just gives me a straight jolt of joy.

(Pictured above are two nurses who have known Daniel since he was born. They have both taken care of Daniel many times throughout his journey.)

I get the feeling that Daniel has become the PICU unit mascot. It has been a really hard month with several devastating losses. To see Daniel, who has been here for so long, do so well…it is a tremendous victory. We all need this victory.

This journey with Daniel has been transformative for me. I honestly am so thankful to have gone through it. It sounds so bizarre to say that. It almost sounds like I am glad Daniel was born with HLHS. Am I glad my son has gone through hell? NO.

But I am glad that I have grown through this journey. My eyes and heart are opened, and I am forever changed.

I have met so many people from all walks of life. I have learned that people are just people. We are all basically the same. We need friendship, support, and love. We need to be seen and heard.

I have seen and felt the power of prayer. I am so thankful for all of the people who have remembered us and prayed for us. I have felt God’s presence throughout this journey in real, tangible ways I have never felt before. I have learned just how true the words are, “Man shall not live by bread alone, but by every word that comes from the mouth of God” (Matt. 4:4). I have spent countless hours reading my Bible, and God has consistently answered my prayers for peace. 

I have learned how precious life is. Everyone up here is desperately clinging to life. I intend to help Daniel live his life to the fullest. I now realize every moment is a gift, and nothing is guaranteed.

Please pray that Daniel continues to make progress. I am really hoping we can come home next week.

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