It’s the day every parent has nightmares about. The day you must prepare to bury your child. I told my wife Sue last night that I didn’t want to go to sleep because it would only make this day come sooner. She insisted we both needed rest for a long day ahead and if one thing I’ve learned in our 20 years of marriage is that she is always right. Sleep did not come easy for me last night. It’s 4:30AM and I’m not able to sleep any longer and feeling the inspiration to write. I’ve always hated writing. It was the last thing I’d ever want to do in school, I was frightened to death to have others read it for fear of critical acceptance. This may be Faith’s gift to me to be able to freely express the feelings of my heart and mind and to share it with the world. She was only beginning to speak with words before she was taken back from us. I will be her voice and allow her inspiration to be expressed through my words and writings.

Today is a day I fear so much. I’ve already said goodbye to my little girl the day she died. I was there with her before during and after. I do not want to see or think of what they did to that precious little body to prepare it for “presentation”. I somewhat understand the need for others to have the need to have the shocking realization that she is truly gone. A decision I made for myself and we made for our child is that her coffin will not be open for viewing. The body she left behind is not the Faith we all know and love it was only the imperfect vessel for a perfect soul to make her mortal journey here on earth. Her guests will be greeted with beautiful pictures of her face & smile through all her 8 years with us along with a photo video put to music that perfectly describes her and what she meant to the world.

She will be given her final sacrament in the religion we raised her just 12 days after she was to make her first penance & communion. This precious life was baptized in Christ, received anointment of the sick and will finally have a Catholic funeral. She will not be buried in the earth, we have decided upon cremation. We will hold and care for her earthly remains as her parents on earth until finally one day Sue and I see her again and we will be interned together for eternity.

I’ve been asked by one very special family of a very special friend to Faith to continue this blog. My intention was for it to end with Faith’s death. But I still believe that the spirit and soul of Faith lives on and so will this blog. It will still be “Faith’s Folly” because the word folly and all its meanings fits the events of the past months on so many levels as I hope to reveal over time. “A Journey back to health” will become “Journey of Faith, Healing and Celebrating Life”. I don’t know how often Faith will inspire me to write, she as others knows me too well, as I need some outside pressure or fire under my ass to get from the beginning to the end of projects.

Please continue to pray for my family and me, for peace and understanding over the next very difficult days to come.

When you were born, you cried and the world rejoiced.
Live your life in a manner
so that when you die the world cries and you rejoice.
-Native American Proverb

The Good

• Faith is breathing on her own. She is breathing a mixture of O2 and NO which is therapeutic and helps keep the blood vessels of the lungs open and flowing.
• Starting about 7PM on Friday her “distressed” breathing pattern changed to a more normal one, less labor and a slower rate.
• Sedation has been cut quite a bit:
o Reason 1: One side effect is a slower/irregular heart rate which she started to have on Friday/Saturday night. Resolved after reduction in sedation.
o Reason 2: It’s for her comfort and compliance, as long as she is comfortable and is willing to mostly cooperate with what needs to be done we can use less.
o Cute story. Her nurse and I were doing something Friday night with her and she was struggling and got her nasal cannula out of her nose (Still taped to cheeks). I saw her hand headed for it ready to rip it from her face, stopped her and told her no. A few minutes later same circumstance, I wasn’t quick enough to get the hand. To both of our surprise she used her little fingers to push the prongs of the cannula back into her nose. I guess it helps and she gets it.
• NO vascular surgery. There is currently no benefit that outweighs the risk of either thombectomy or putting in a vascular filter.

The Bad

• We are suspicious that she had a bleeding/clotting disorder before surgery and before the central line was ever placed. Parent intuition. The ICU attending shares our suspicion. While not pertinent to current care it will affect future care.
• Now that surgery isn’t an option they will be transitioning from Heparin to a longer lasting more stable form called Low Mollecular Weight Heparin (http://en.wikipedia.org/wiki/Low_molecular_weight_heparin) specifically Lovenox (http://www.drugs.com/lovenox.html) . This is going to mean daily injections (2 a day) for the next 3-6 months.

The Ugly
• NONE — Lets keep this empty!

Treatment:

• Sedation much lower than before, more waking hours, eating by mouth and keeping active but in bed.
• Changeover from Heparin to Lovenox.
• O2 with NO
• Continue Wean from narcotics withdrawal from prior encounter at ICU