A place to share updates, progress, pictures, and prayers for our son,Isaac, as he fights Spinal Muscular Atrophy.
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Thursday, October 15, 2015
Archives: 6/19/2014 Sol y Sombra
Posted Jun 19, 2014 1:10am
"Back in high school, I read James Michener's "Mexico," a book more or less about bullfighting. One of the themes in the book is "sol y sombra," or "sun and shade," referring to the different seats available at a bullfight. I looked out the window from Isaac's hospital room this afternoon; clear blue sky on one side, with a perfect line of heavy rain-clouds to the west. After this sunny, beautiful afternoon came the equally beautiful thunder, lightening, hail, and rain. And every day of this hospitalization has felt like that, sol y sombra. Hot and burning sun, refreshing and cool shade. Warm and comforting sun, dark and chilling shade. It's a matter of perspective. And, you know, Colorado weather.
The PICU is full to capacity tonight. I heard two code blues this afternoon. Today I contacted our local area services on aging to ask about Medicaid for a child with a 'life limiting illness.' I called Families of SMA to ask about getting a car bed so Isaac can leave the hospital, when that day comes. I registered Isaac on the SMA registry for clinical trials. Maybe there is something that can help him. More likely there is some way he can help others. I comforted Isaac while he cried for almost 3 hours because he was so uncomfortable. What parent hasn't done that?
Isaac had three sessions off the bi-pap today, and he tolerated each of them very well. The middle session was an hour and forty minutes, a full hour longer than any other session. He had a Cough Assist session right in the middle, which extended his ability to breath comfortably. If I haven't explained, the CoughAssist is a machine that forces air into Isaac's lungs and sucks it out again, mimicking a cough. When he isn't on the bi-pap, he is on high flow oxygen- 8 liters, which is a lot. Too much to go home on. So we stick with the PICU until he can safely and comfortably tolerate 3 hour long sessions each day. After that we go onto a regular floor to wean him off so much oxygen, learn to use equipment, and then, God willing, go home. During the evening session of nasal cannula trial, I was able to try to nurse Isaac. I have to pump beforehand so he doesn't really get any milk, just a few drops. It took him a minute to remember what he was supposed to do. His swallow is very weak after 7 days of no nursing, not to mention the baseline weakness from SMA. But he enjoyed it, and I felt almost normal for a moment. He is resting very comfortably now, thank God. It's past my bedtime too.
Final thoughts for the night: I met the hospital chaplain this afternoon. The poor guy came in knowing very little about Isaac, just that he's a baby in the ICU. He asked me "So, what's going on?" I told him, and he was shocked, speechless for a moment. Then he said "Well, that is...heavy." Heavy. The best word I have heard to describe this whole ordeal. The best word to describe how I feel. Jesus carried his heavy cross, and he was beaten half to death before he even began. He only had one person to help him carry it. Jeremiah and I have all of you, and our thanks will never be enough. Jeremiah and I have Jesus, and that will always be enough."
A friend and co-worker shared the following prayer in response to this update: An Inspirational Prayer: "Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace,then. Put aside all anxious thoughts and imaginations, and say continually: "The Lord is my strength and my shield. My heart has trusted in Him and I am helped. He is not only with me but in me, and I in Him." --St Francis de Sales